Daily Ponderings

Congenital Heart Disease

2012-02-01T13:39:00.000-05:00

Today marks the beginning of Congenital Heart Disease Awareness Month! I was born 36 years ago with an ASD and VSD, known then as Atrioventricular Canal Defect. I was also diagnosed with PH when the holes were discovered at 9 months old. The entire combination is known as Eisenmenger's syndrome. My holes have never been repaired, and are actually helping the pressures in my lungs, although they are still high. Doctors didn't give my parents much hope back then, but hey, I'm still here!!

Happy Birthday Wishes

2012-01-29T11:56:00.004-05:00

I am thinking of my beautiful Grandma K. today, as she celebrates her 89th birthday with family who live much closer to her than I do. I wish I could be there as well! I did call her last night to wish her a happy birthday, and we chatted for a bit. You would never know my Grandma was 89. She certainly doesn't look it at all (which is a YAY for me since I have her genes!!). Besides the need for a walker nowadays, she's very healthy. Her doctor told her a couple years ago that she could be around for another 10 years, and she said, "Oh gosh, I hope not!!" lol So today I'm thinking of her and hoping she gets to celebrate at least a few more birthdays in the years to come!! She is a special lady!!

Whoa, I Got Tagged!

2012-01-28T15:15:00.001-05:00

I don't think I've ever been blog-tagged before, and if I have, I sure can't remember! But over a week ago (UGH, I'm sooooo behind), I was tagged by Sunshine of Such Life in the Tropics, and I'm finally getting around to answering her questions!!

And Sunshine's questions are: (insert loud drum roll here if you wish!)

1. If you could go to any place right now where would you go? I'd love to be in Hawaii right now!!

2. What do you keep handy at your night stand? My night stand is used for my glasses (which I hardly wear, bad!), a basket I've had since I was a flower girl in my aunt's wedding many moons ago, and my alarm clock with huge numbers that I've had since I was a teen!

3. When you were a kid, what was your family game? Hmm, I don't think we had a family game. I know my sisters and I used to make up all kinds of games when we were little! I think our favorite was Piggy. Don't ask!! LOL

4. What's your favorite kinds of food to cook? I love to make soups. 90% of the time I never follow a recipe for a soup, I just get broth, and chop things up that I like to eat, throw them in the pot, and voila. I've got soup!! And usually a ton of it!!

5. What are 3 things you can't live without? I couldn't live without my phone, my Sony mp3 player, and my little guy (Mittens, of course!).

6. If you could change somebody's life today, who would you help and how? If I had the money to do it, I would help my parents. I would pay off their debt so they would not have to worry about how to pay for things when my dad is no longer working.

7. What do you think would be the hardest thing for you to give up on? Hmm. I'd have a hard time giving up the internet. I know, how sad is that?? But really, since I haven't been able to work, the internet has been a huge part of my life. I don't know what I would do without it completely!!

8. If you could change your name, what would you name yourself? Gosh, this is something I've never even considered! I honestly have to say with my red hair and green eyes, that Colleen really does fit well with me! lol

9. If you could do anything OR wish for anything that would come true, what would you wish? Of course, I am a bit biased, but I truly would wish for a cure for those living with Pulmonary Hypertension.

10. Where would you like to go on your next vacation? Well, I am really trying to plan for Orlando, FL for the PH conference! And even though it would be a very busy three days, I'd still consider it a vacation since I never get to go places like that!! I think as long as I get to squeeze in SeaWorld, I'd be a very happy camper!!

11. What is your favorite blog to read everyday? I read several blogs every day. I don't really have a favorite! I think they are all really neat since every single one of them talks about very different topics!

Now, I am supposed to create my own questions and tag people so they can respond in their own blogs. However, since I have no idea who really reads my blog a lot, I'm going to just ask the questions and leave it open for anyone to answer in their blogs! If you do answer them, please just leave me a comment so that I can come and see how you've answered them!!

Here goes!

1. What do you look forward to on the weekend?

2. You are given $10,000. You're not allowed to spend it on yourself. What do you do with the money??

3. What is the best gift you've ever received?

4. What was your most favorite vacation?

5. What is your idea of a perfect friend?

6. Name a book you loved, and tell why.

7. If you had to live in a different time, what would it be and why?

8. What is your favorite season, and why?

9. What is your favorite store, or place to shop?

10. What was life in high school like for you?

11. What is one thing you hope to accomplish in your lifetime, if you haven't already done so?

Have fun answering the questions! I hope I didn't make them too hard!! lol

A PH Kind Of Day

2012-01-27T23:13:00.000-05:00

This week I exercised for 4 days in a row. While I think that is pretty good, and I was hoping to go for 5 today, my body screamed otherwise. Not only did I go to rehab yesterday morning, but I also went shopping for several hours in the afternoon after lunch with Renee, and wow, were my legs and feet just killing me. I was so exhausted by 8pm last night, but struggled to stay up until 10:30, when I just couldn't take it any longer. I was in bed by 10:45, and when K. texted me at 11:15 I was almost asleep. I got up this morning around 10am, but still, my body was telling me it wanted to crawl back under the covers. So what do I call this kind of day that is mostly utter exhaustion?? It's a PH day. It's a day when my body and lungs just don't want to do a thing because I've totally dragged them to the ground, run them over with my car, and then stomped on them for good measure. Ok, yes that's an exaggeration, but that's how I felt for most of the morning!! So I finally couldn't take it anymore around 1pm, and I went to take a nap. After that, I felt much better and was able to get some things done in the afternoon. I still considered exercising after dinner, but I decided (for once!) not to push myself. I made a necklace for myself, and then watched a movie. So it was a pretty calm day today, which is something I needed!! I'm glad for the rest, because my weekend will be busy with friends tomorrow, and going to K.'s on Sunday!! Yay!!

A Comparison Of Sorts

2012-01-15T12:03:00.000-05:00

Everyone knows Mittens is my cute little(??) orange Maine coon kid. I got him as a little fluff ball, and now he is just massive. I quite often call him my little lion cub because, well, he resembles a miniature lion! So last week I saw a video clip making its way around the news and internet of a real king of the jungle who was not so happy with a little 3yr old girl tapping at the glass from which she was admiring him. And immediately while watching, all I could think of was, "Mittens does that, too!!!" I found it so funny to see the lion doing what Mittens does almost every single day to my doors around the apartment!! So, I have a clip below that I took last year of Mittens banging the heck out of my computer room door (because at the time I took it, the Christmas tree was behind that door, and he just KNEW it!!). And I also have the clip from Youtube of the zoo lion doing pretty much the same thing to the glass window separating him from the little girl. Do they not look the same??? The only difference is the size!! LOL

Hmm, What To Eat??

2012-01-15T11:47:00.000-05:00

This weekend it's been downright cold, and I knew I'd be stuck inside. So I decided earlier in the week that I wanted to cook several things, and I bought a variety of ingredients on Wednesday to prepare!

On Friday, I made a homemade pizza!

Saturday, I made a pot of spaghetti sauce in the crock pot!

Today, I am making chicken tortilla soup in the crock pot! I am also planning on going through the cookbook I won to see if there is anything simple I can whip up. However, I don't know where to put anything anymore!! My freezer is so stuffed. It almost looks as if I haven't eaten in weeks! lol

Why, Hello Winter

2012-01-13T11:06:00.001-05:00

Guess what finally decided to show up?? The storm started late last night in most areas around here, and it was expected. However, I'm not sure how I feel about it!! The snow is pretty, but it's accompanied by some pretty nasty high winds and bitter cold temperatures. Considering the last two days were almost 50 degrees, and yesterday was rainy, I guess I just can't appreciate the snow!!! I know we're right in the middle of winter, but we've been so spoiled this year so far. It had to end some time, though, and maybe it's no coincidence that we got winter back on Friday the 13th???

Special Delivery!

2012-01-10T22:29:00.001-05:00

I never get my mail before 10am, or even before noon. So it was surprising this morning when I heard the doorbell ring and saw the postman standing there! I opened the door, and he had a package that needed a signature. After signing the paper, he handed the package to me, and I noticed that it wasn't for my upstairs neighbor, but for me! And then I saw that it was from Sunshine! Oh yay, it was the recipe book I had won from her blog giveaway last month! I didn't have time to open the package right then since I was trying to get myself out the door to go to rehab. So I opened it shortly after I got home. I was excited to see the cookbook, a "vintage Cayman Island" Christmas card, and even a little bag of treats for Mittens! But I was especially excited to see a very cute panda amigurumi crochet animal that she made all on her own! It is so adorable!! I showed it to Mittens, and he seemed interested in playing with it, so I'm gonna have to keep it somewhere he won't get it because it's not going to become his toy!! lol Anyway, I flipped through some of the cookbook this afternoon, and there are some very delicious-sounding recipes that I'd like to try out already! I'm going to write down some ingredients, and maybe go shopping tomorrow so I can make a few of them soon! So although I didn't end up getting any other mail later on today, I'd say that's ok! This was a very nice package to receive!! Thank you so much, Sunshine!! :) :)

Happy Spring! Oh, Wait....

2012-01-09T00:09:00.000-05:00

The weather this winter has been very unusual. We've had some days that are almost spring-like, and it's not just in my area! All around the country, places that don't get snow have gotten some, and other places are wondering when the snow is showing up. Of course, I am so not complaining! We've had only a few days that were a handful of degrees, and I didn't go out. But mostly, I'm still able to get around and not freeze horribly, so it's been rather nice. Of course, things can turn on a dime!! I'm still thinking that all of a sudden, we're going to be hit with a huge storm, or a very bone-chilling cold spell. So I'm just trying to enjoy the nicer weather when it's here!

This weekend wasn't too bad. Yesterday I went out for about an hour to get some food stuff at Aldi's, and to put gas in my car since the weather wasn't too bad. Today I spent the afternoon and evening hanging out with K. We made dinner, watched football (he's trying so hard to get me to understand what's going on, and I think I'm starting to get the hang of it! lol), and played gin rummy (where he proceeded to kick my butt!!). I really enjoyed the time we spent together. He's a really sweet guy! :)

Looks like my week isn't all that busy. I need to get my monthly bloodwork done tomorrow morning. I'm supposed to return some stuff to Walmart, but I'm not in a hurry to go back there yet again. I swear I live there! lol My friend, Renee, might be able to come over on Friday, and maybe she'll be able to try out my new coffee pot I'm expecting to arrive on Tuesday! I also need to make sure I try to contact the person at the hospital who schedules meetings that go on there, because I need to find out if I can have a couple more meetings this spring. And when I do find out if I can hold more meetings, I need to plan them!! So maybe I will be doing more than I expected this week! We'll see how it goes!

Now before I end this post and go to bed, here is my interesting bit of information that I'm trying to include with all my posts lately. Do you remember those crazy pots of plants called Chia Pets? They were so popular a couple decades ago and are unbelievably still being sold today (I can't believe it!). Well, apparently, chia seeds can be eaten, and are actually very healthy! Now I supposed if I found some chia seeds that I could eat instead of planting them in a pot that is the shape of a head, I'd be willing to buy some to throw into a snack or a favorite meal! lol You can find out more by reading the link below! You can even learn how to make chia breakfast porridge (not too sure about that??)!

Edible Chia Seeds!!

Argh

2012-01-04T15:31:00.000-05:00

It's days like today that make me wonder how I could be thinking about working. I woke up half an hour after my alarm went off at 7am to take my Revatio (I never even heard the alarm, and I keep the phone right next to my pillow!), and couldn't go back to sleep for an hour after. By the time I did get up around 10:30, I just didn't feel well. My head was killing me, and my ear ached. While these issues don't have anything to do with PH, the fact that I feel crummy makes my PH symptoms a bit worse, especially the shortness of breath. I really hate that. I'd rather be short of breath because I exercised or I vacuumed, not because I got dressed. I've been sitting in my kitchen on the laptop all day doing nothing but reading emails, news articles, Facebook, and playing a couple games. Not my idea of being productive at all!!

I have decided to try including something funny or inspiring or informative that I've come across on the internet in my posts. I can't promise something every day, because I know how badly I am at posting every day! But I just thought it would be neat to include, especially when I post something that isn't too happy! So I'm including a video I saw quite a long time ago, but that resurfaced in one of those "end of the year" compilations of funniest videos. If this does not make you laugh or smile like it did me when I first saw it, then I don't know what else to show you that would be funnier or cuter!! I also didn't realize that since this video first was seeing, little Micah has other videos of him laughing as well! He's one entertaining baby!!

Happy New Year (Three Days Late)!

2012-01-03T22:42:00.000-05:00

It's a brand new year! Many people see it as a brand new beginning, a way to start out fresh, to break old habits or start new ones. Some people see it as nothing different, just another year to add to the calendar. I usually try to think of a new year as a fresh start, but I don't make resolutions. I've tried in the past, and I never keep them! Instead, I just try to think of what I'd like to see happening for myself in the new year. For 2012, these are a few of the things I'd like to happen:

*I'd like to find a job of some sort. I know I can't really do a full time job, so it would need to be part time. I'd love to be able to find something to do from home. Going out in the winter is so hard! I might even consider just having a part time job for the summer. I'm on the lookout!

*I have an incredible amount of beads in the other room, and I'm not really able to have a business like I would love to own. I make jewelry as gifts for friends sometimes, and a few people here and there ask me to make things, but I really need to find something else to do with all the beads! So I'm considering several options, including blog giveaways, and just donating to women's shelters or something like that. I'll have to look into it!

*I usually only have 2 PH support group meetings a year, but this year I want to try adding a few more, mainly in the spring/summer. My group members really like getting together, so trying to have a couple more meetings, even if they are only for coffee or dinner or something, would be a great idea!

*Speaking of PH, the biannual PHA conference is this summer in Orlando, FL. I've applied for a full scholarship, and will hopefully find out by the end of the month if I'm eligible for it or not. I have a feeling I will be since I've never been to a PHA conference before, and because I'm a support group leader. My only problem is finding a way there! I have a feeling I might need to go by myself, so I'm trying to think of the easiest way to get there, which would most likely be flying. Of course, I've never ever flown before. And I don't really want my first major flight to be to a huge and very busy conference when I have no idea how I'm going to feel. But I will figure it out when I find out about the scholarships!

*I'd like to see what happens with K. and I. I've really been enjoying the time we spend together. It's been almost every weekend for quite awhile. We talk every day either on the phone or email or both, and texting is included, too. I still feel like it's not real, but I know it is! lol He's been a very sweet man, and I'm just hoping things continue to go well.

*Of course, above all else, I want to see my health continue to be stable, or even improve just a little bit!! I hope to do this by continuing to eat right, and increasing my exercise. I'm really so thankful that most of the time I feel well. I'm able to do things around the house, and go out often (unless it's the winter and it's only a handful of degrees, like it was today!!), and not always feel the need for a nap. I'm praying that it continues!!

I'm sure that during the year, I will have different goals or things I'd like to see happen in my life, but right now, these are the ones that are on the top of my list. I'm thinking very positive for a great 2012 for me, my family, my friends, and all of my phriends (PHers who are friends)!!

Ending And Beginning Anew

2011-12-31T15:47:00.000-05:00

2011 was a roller coaster year for so many people. My year began with a lot of stress, which eventually got sorted. The summer was crazy with stuff for Joan and Rick's wedding, and September gave me a new brother in law. September also brought someone new into my life, and the rest of the fall season seemed to go by so quickly with him in it. I think the best thing is that this entire year I've been so healthy, for the most part! I've lost some dear phriends, and gained many new ones. I'm praying that 2012 brings many good opportunities for my family and friends, and a cure for PH!! Happy New Year everyone!!

Well, Crap!

2011-12-31T00:51:00.001-05:00

Those were the words used many times by a sweet phriend whenever she was trying to express frustration over something. Those were the same words many of my phriends who knew Annette used today when we found out she had passed away this morning. It came as a surprise to so many of us. She had some health struggles in the past year in regards to her PH, but lately, many who talked to her reported that Annette said she was feeling ok. Annette died in her sleep, which is the only thing that brings me some comfort. I am hoping that she went peacefully.

Annette's PH journey began a little over 7 years ago. She posted quite often on the PHA message boards. She was a 1st grade teacher, and once she was put on Flolan, she tried so hard to keep up with her job. Eventually she had to resign, or retire. I can't remember which. After that, she did volunteer reading in classrooms. She also did so much with the Omaha PH support group. She helped raise awareness by being a part of a large fundraiser that included silent auctions. I was able to donate jewelry one year, and she was so incredibly appreciative of it! The fundraiser always makes thousands of dollars for research, and I'm sure the next one will include something to remember how much Annette did to help.

Annette kept a most entertaining blog. My favorite posts were always about her 2 dogs. She had such a talent of writing about there silly adventures that I often found myself howling with laughter while reading! She often always gave book or movie reviews, complete with how many "puppy paws" she'd use to rate the book or movie. Sometimes I would write my own blog about something I watched or read, and I'd borrow the puppy paws! lol She thought it quite funny!

Annette sent me a dozen roses on my birthday the year that Mason died. She was a sweet person who often thought of others before thinking of herself. Her kindness, her giving of herself, her thoughtfulness, and her laughter are the things we will all miss the most. She leaves a very doting husband and two loving sons behind. We are all heartbroken over her loss, I can't imagine what they are going through. RIP Annette, breathe easy forever.

This was not a great way to end the year. I pray so hard that 2012 is the year a cure for PH is found.

Merry Christmas!

2011-12-25T13:43:00.001-05:00

I wish all of you a very Merry Christmas! I hope you're able to celebrate with loved ones. Remember that Christmas is not about the gifts we give, it's about the wonderful gift God gave to us: His son, Jesus. Jesus was born to show the love God has for His people, and to show that we should all be sharing that love with others. He is the reason for the season!

Layaway Angels

2011-12-22T22:17:00.001-05:00

Last week I read an article about a woman who went into a Kmart (I can't remember what state), and asked if she could pay off some layaways for people who had toys on their list. Since then, I've heard of at least 8 other stories of total strangers paying off layaways for people, mostly at Kmart or Walmart. There were a couple instances in this area, too. I think it's so wonderful that there are some very giving people out there, and I only wish that I had more money to be able to do the same thing. These people are being called "Layaway Angels," and the name is certainly fitting! They are bringing unexpected joy to the families of people who might not be able to have a good Christmas. To me, their kindness is definitely what the spirit of Christmas is all about!!

Ooops

2011-12-21T22:45:00.001-05:00

My mom didn't make it over here today like she wanted. She was too busy cleaning and getting ready for my sister's arrival on Friday. Oh well, that's ok! I changed the bedding and didn't start a recipe until later in the afternoon, so I only made one thing instead of two. I made the pecan turtle bars, and MMMMMMMM. I'm not sure I can share them. lol I'll make the other cookies tomorrow, and maybe the pecan pie. We'll see how much energy I have!

So, I take my Revatio (Viagra) pills at 7am, 3pm, and 11pm. It's supposed to be taken 8 hours apart. This afternoon around 3, I was on the phone with my mom while I was trying to open the new bottle of Revatio tablets I had, and during the conversation, I thought I had taken my dose. After I got off the phone, I spent 5 minutes struggling to remember whether or not I had swallowed the pills. What the heck??? This isn't the only time I've done this. There have been plenty of times that I go to take my pill (no matter what it is), and then not even 10 minutes later I can't remember taking it!! So today, I kinda thought I didn't take the 3pm dose, so I took it. Again? I don't know. I began to doubt myself as soon as they went down my throat. UGH!! So, for the next hour I just took it easy, and laid down. Just in case I felt faint or something! But since I didn't have any major side effects from the possibility of taking too much Revatio, I assumed that I didn't take a double dose. So, I guess this means I really should buy a pill box, because it would probably be a lot safer knowing for sure that I took a dose!

Getting Prepared

2011-12-21T13:41:00.000-05:00

Christmas is 4 days away, and it's hard to believe! I am pretty much set gift-wise. I've wrapped everything except for K's gift, which is in a huge box. My wrapping paper won't cover it at all! I was going to buy some more, but my mom said she'd bring some over later. Once the box is wrapped, I'm definitely done!

My sister, Lisa, is going to make her way home from NC tomorrow. They are driving, so they'll travel to PA to where my aunt lives and spend the night before finishing their trip on Friday. There's no way they could make that trip a full day with an almost 3yr old! I'm so excited to see them! They will actually be here to celebrate Christmas ON CHRISTMAS!! Usually they would come the day after, but this year, they'll be here earlier. My family will be going to Mandy's house for dinner and opening gifts. I'm looking forward to it so much! I'm crossing my fingers that K will be able to come for dessert. It would be nice if he could, but he spends time with his family, too, so I understand if he can't!

I'm supposed to be making some cookies today with my mom. I'm not sure what she's doing since she isn't here yet. lol I'm going to make peanut butter cup cookies, and pecan turtle bars. They both sounded yummy! I had to unwrap all the Reese's peanut butter mini cups and put them in the fridge, and let me tell you how hard it was not to eat any of them!! The recipe calls for 40 mini cups, and I bought a bag with exactly 40 in them. Absolutely no room for snitching, darn it all!! lol

I think the only thing that is NOT ready for Christmas is the weather. Today is rainy and 50 out. 50!! For Niagara Falls this time of year, that is just nuts!! Don't get me wrong, I actually don't mind that it's not freezing out, but I would like a white Christmas. I'm just not sure that's going to happen! If we do get any snow, it'll probably only be a couple inches. But I guess I'll take whatever comes!

It's A Major Award!

2011-12-16T11:37:00.000-05:00

Wow, I won! I was not expecting to win, but I did! What did I win? Well, in my last post I mentioned a blog giveaway by Sunshine, and the deadline was last night. There weren't too many who entered, but by random draw, my name was picked to win the prize! I will be receiving a cookbook that supports the Cayman Humane Society, and also a little surprise (which I can't wait to see!)! Thank you very much, Sunshine, for doing this blog giveaway! I've entered a few of these on various blogs before, but this is the first one I've ever won! I will definitely post some recipes that sound delicious or that I end up making after I receive it in the mail! :)

Do You Like Giveaways??

2011-12-14T22:44:00.002-05:00

Then sign up for this Christmas giveaway, ending on Thursday at midnight EST!! It's a great cookbook filled with hopefully delicious recipes, and supporting the Cayman Humane Society on the Cayman Islands! This giveaway is being....well...given away (hehe) by a lovely blogger I've been following for quite some time named Sunshine! I'm always jealous of her posts because she lives in such a beautiful WARM place!! lol Anyway, if you'd like to participate in this giveaway, please follow the link! Good luck to all who enter!!

http://suchlifeinthetropics.blogspot.com/2011/12/christmas-treat.html

Holidaze

2011-12-13T22:51:00.002-05:00

Yes, I'm here. I haven't posted in several weeks, but I am here and I'm doing ok! I keep wanting to write something, but I either A) Have so much I want to say and by the time I want to write I'm tired and I just go to bed, or B) I just have so much I want to write that I don't know where to start, and then I figure maybe I'll do better tomorrow. Tonight, it's a combination of both, and so with that, I'm posting this short blurb to say that I am around, and that I really do hope to be able to write something with more sustenance very soon!!!

Cure?

2011-11-21T12:49:00.003-05:00

The only cure for PH is a lung transplant. Not everyone is eligible for one, not everyone wants to go through one. It is not an easy fix. Transplant brings along many complications, and an entirely different set of medications for life. This is why we need more PH awareness and a cure!!

Inhaled Medication

2011-11-20T12:15:00.002-05:00

Ventavis (iloprost) was the first FDA-approved inhaler treatment for symptoms of PH. It was approved in 2004. Ventavis is taken 6-9 times a day, depending on the response of the patient. Ventavis can cost around $60-70,000 a year.

The biggest complaint I've heard from patients on Ventavis is the amount of times a person needs to take the treatment a day. In order to fit up to 9 treatments, it needs to be done about every 2 hours. Another complaint is the setup and the cleanup, which can be time consuming. However, Ventavis has helped many PHers, so I guess you just have to look at the benefits outweighing the annoyances.

Oral Medication IV

2011-11-19T11:40:00.001-05:00

Adcirca (tadalafil or Cialis), was FDA-approved to treat PH symptoms in 2009. It works the same way Revatio works. The difference is that Adcirca is taken once a day, whereas Revatio is taken three times a day.

Oral Medication III

2011-11-18T13:34:00.002-05:00

Revatio (sildenafil or viagra) was FDA-approved for treating PH symptoms in 2005. It works by relaxing the blood vessels in the lungs, which allows the heart to pump more blood into the lungs easier than when the vessels are constricted. Revatio is taken 3 times a day, 8 hours between each dose. Revatio costs at least $10,000 a year. Nitrates or nitric oxide should NOT be taken with Revatio, as it can cause an unsafe drop in blood pressure.

I began Revatio on August 16, 2007. I felt the need to add something along with the Tracleer, because I didn't feel it was doing enough for me almost a year after taking it. I still waited pretty long before asking about Revatio, but when I finally did, my PH doctor agreed to let me try it. I really feel that the combination of Tracleer and Revatio have been keeping me stable in the last few years! I hope it continues that way, but if I need to, I can increase the amount of Revatio I take before considering another drug to add to my daily regimen.

Oral Medication II

2011-11-17T15:24:00.001-05:00

Letairis (ambrisentan) is another oral medication that can be used to treat symptoms of PH. It was FDA-approved in 2007. It works much in the same way as Tracleer does, only it is taken once a day. Also, just recently monthly bloodwork to check liver enzymes are no longer required, although some doctors may want their patients to continue to get theirs checked. Letairis can cost around $70,000 a year.

Oral Medication

2011-11-16T12:34:00.002-05:00

Tracleer (bosentan) became the first oral treatment for PH, being FDA-approved in 2001. It is taken twice a day, 12 hours apart. Tracleer can cause liver damage, which is why monthly bloodwork is required by all PH patients taking this med. Tracleer can also cause severe birth defects, which is also why women taking Tracleer must also have a monthly pregnancy test. Tracleer costs almost $70,000 a year.

Tracleer was the first PH med that I started. I took the first pill on Oct. 12, 2003. While I didn't notice any huge difference for quite awhile, the first tiny inkling I had of the med working for me was almost a month after I had started it. I had to go vote, and on the way back to my car from the building, it suddenly dawned on me that I wasn't as short of breath as I usually get from walking a distance. I got in my car and cried. Months later, I was dancing at my sister's wedding. I couldn't believe what a change Tracleer made in my daily living, and it made me incredibly thankful for the advances in science since the time I was diagnosed with PH as a baby!!

Another Medication

2011-11-15T15:09:00.002-05:00

Remodulin (treprostinil) is another treatment for PH that can be delivered in three ways: by IV through the veins, or subcutaneously (under the skin), or by inhalation (called Tyvaso). There are also trials that are being conducted right now for oral Remodulin, and hopefully that will be approved at some point as another way to use this med. Depending on the dosage a patient is given, Remodulin can cost at least $100,000 a year.

If I were to need another drug added to the regimen of pills I'm taking every day to treat my PH symptoms, I would probably ask my doctors about adding Tyvaso. Once again, the IV treatment would be risky. The huge drawback with the subq version of Remodulin is the pain. I have known many PHers who just can't bear the pain that goes along with that way of using Remodulin. So I'm not sure I could do it, either! But the inhaled version seems to be much easier, so I would go along with that IF I were to need something more.

The Gold Standard

2011-11-14T16:06:00.002-05:00

Flolan (epoprostenol) was the first FDA-approved treatment for PH symptoms. It only lasts a few minutes in the blood stream, which is why it needs to be delivered continuously by IV through a permanent catheter placed in a large vein going into the heart. Complications can include jaw pain, foot pain, headaches, rashes, as well as site infections. Not all patients experience all these problems. Flolan can cost approximated $100,000 a year, but may be higher depending on a patient's dosage.

I have not been put on Flolan to treat my PH symptoms, and I may never need it. It's a powerful medication that has helped many PHers improve, but the risks may outweigh the benefits for some. In my case, because of the 2 holes in my heart, my cardiologist feels that Flolan would be a last resort option for me, most likely if I were waiting for a lung transplant. The risk of line infections is too great at this point, when I'm doing considerably well. But I know if I ever needed Flolan, I would do it. Anything to keep me going, even for a little bit, is worth it to me!

Eisenmenger Syndrome

2011-11-07T23:06:00.002-05:00

I know I have mentioned that I have Eisenmenger syndrome. Tonight I found a great link describing exactly what it is! I hope you're able to spend a few minutes reading it!

https://www.memorialhealth.com/healthinfo/content.aspx?pageid=P08482

If you don't want to click on the link, the info is copied below:

Eisenmenger Syndrome

What is Eisenmenger syndrome?

Eisenmenger syndrome is a condition that includes a collection of symptoms: cyanosis (pale blue or grayish skin due to decreased oxygen in the blood), pulmonary hypertension (high blood pressure in the blood vessels of the lungs), and erythrocytosis (increased number of red blood cells in the blood due to decreased oxygen in the blood).

Eisenmenger syndrome primarily affects adolescents and adults with certain congenital heart defects that were repaired late (after the first year of life) or that were never repaired. Eisenmenger syndrome, however, can occur in infants or children born with pulmonary hypertension; therefore, symptoms related to cyanosis may occur much earlier in life.

What causes Eisenmenger syndrome?

Eisenmenger syndrome progresses over time as a result of the effects of high blood pressure in the lungs. This high blood pressure, or pulmonary hypertension, occurs because of congenital heart defects that cause blood flow from the left side of the heart to the right side of the heart (left-to-right shunt). Congenital heart defects of this type include:

*patent ductus arteriosus (PDA) - a connection between the aorta and the pulmonary artery which allows oxygen-rich (red) blood that should go to the body to recirculate through the lungs.
*atrial septal defect (ASD) - an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria.
ventricular septal defect (VSD) - an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles.
*atrioventricular canal defect (AV canal) - a complex heart problem that involves several abnormalities of structures inside the heart, including an ASD, VSD, and improperly formed mitral and/or tricuspid valves.

Because the pressures within the left side of the heart are normally greater than those within the right side of the heart, an opening between the left and right side of the heart will cause blood to flow from the left side of the heart into the right side. This left-to-right shunting of blood within the heart causes increased blood flow in the blood vessels of the lungs. The increased blood flow in the lungs' blood vessels causes increased pressure in these vessels (pulmonary hypertension).

If the pulmonary hypertension continues without treatment, the pressure in the right side of the heart may increase to the point that the right side pressure is greater than the left. When this occurs, blood will flow from the right side of the heart to the left (right-to-left shunt), which means that oxygen-poor blood is mixed with the oxygen-rich blood pumped out to the body from the left ventricle.

A reversal of the shunt resulting in a right-to-left shunt causes insufficient oxygen in the blood. In addition, high pressure in the lungs causes progressive changes in the pulmonary blood vessels which result in irreversible damage to the lining of these blood vessels. Fibrosis (the growth of scar tissue due to infection, inflammation, injury, or even healing), and thrombus (clotting) may also occur. The changes inside the lung blood vessels may be referred to as pulmonary vascular obstructive disease or secondary pulmonary arterial hypertension (PAH).

What are common symptoms or complications of Eisenmenger syndrome?

Symptoms:

cyanosis (pale blue or grayish skin due to decreased oxygen in the blood)
dyspnea on exertion (shortness of breath with activity)
shortness of breath at rest
fatigue
chest pain or chest tightness
heart palpitations ("skipping beats or racing")
headache
dizziness or syncope (fainting)
paresthesias (numbness and/or tingling of fingers and toes)
blurred vision

Complications:

blood clots (e.g., deep vein thrombosis in extremities)
hemorrhage (bleeding)
stroke
brain abscesses
gout

Worsening of symptoms or new onset complications can be early warning signs of changes in overall condition and should be evaluated by your physician as soon as possible.

The symptoms of Eisenmenger syndrome may resemble other medical conditions or heart problems. Always consult your physician for a thorough evaluation.

How is Eisenmenger syndrome diagnosed?

A child or adolescent with a history of an atrial septal defect (ASD), ventricular septal defect (VSD), patent ductus arteriosus (PDA), or atrioventricular canal defect (AV canal) that has been unrepaired or repaired after one year of age is at risk for developing Eisenmenger syndrome.

The physician may note a change or increase in intensity of a cardiac murmur (a blowing or rasping sound heard while listening to the heart that may or may not indicate problems within the heart or circulatory system) during a routine physical examination. Complaints of change in exercise tolerance or any associated shortness of breath, chest pain, or palpitations, especially with activity, should be reported to the physician for further investigation.

The physician will perform a physical examination, listening to the heart and lungs, and make other observations that help in the diagnosis. Other tests that may be performed to help with the diagnosis include the following:

blood tests - tests to evaluate for an elevated red blood cell count (erythrocytosis) and anemia.

chest x-ray - a diagnostic test which uses invisible X-ray energy beams to produce images of internal tissues, bones, and organs onto film. There may be changes that take place in the lungs due to extra blood flow that can be seen on an x-ray.

electrocardiogram (ECG or EKG) - a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle stress.

echocardiogram (echo) - a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves. An echo can show the pattern of blood flow through the PDA, and determine how large the opening is, as well as how much blood is passing through it.

cardiac catheterization - a cardiac catheterization is an invasive procedure that gives very detailed information about the structures inside the heart. Under sedation, a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin, and guided to the inside of the heart. Right Heart Cath: pressure and oxygen measurements are taken in the four chambers of the heart, as well as the pulmonary artery and aorta. Left Heart Cath: contrast dye may also be injected to more clearly visualize the blood flow and structures inside the heart.
magnetic resonance imaging (MRI) - a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body. MRI may be used to aid in estimating pulmonary artery pressures in the lungs and to clarify any blood shunting.

Treatment for Eisenmenger syndrome:

Specific treatment for Eisenmenger syndrome will be determined by your physician based on:

age, overall health, and medical history
rate of progression and extent of the disease
tolerance for specific medications, procedures, or therapies
expectations for the course of the disease
personal opinion or preference

The goals of treatment for Eisenmenger syndrome are aimed at decreasing the pulmonary artery pressure, improving oxygenation, and decreasing degree of cyanosis and erythrocytosis. Treatment methods may include, but are not limited to, the following:

medical treatment
Medical treatment for Eisenmenger syndrome is based on symptoms. Types of medical treatments include:

medications
Medications that help to decrease pulmonary hypertension may be prescribed. These medications include calcium channel blockers, prostacyclin, and endothelin receptor antagonists, and work to dilate blood vessels which helps to lower the blood pressure in the lungs. If right heart failure develops, diuretics (water pills) may be prescribed to help decrease blood volume.

oxygen
Supplemental oxygen may be used during sleep periods or while resting. Use of oxygen may progress to continuous use for symptom relief.

phlebotomy
Phlebotomy (removal of blood) should not be done frequently, but may be recommended when erythrocytosis causes hyperviscosity (extreme thickness) of the blood. The volume of the blood removed is replaced with intravenous (IV) saline solution to thin the blood. Phlebotomy is generally done only when symptoms are severe and/or the hematocrit (the percentage of blood that is made up of red blood cells) becomes extremely elevated.

other treatments
Eisenmenger syndrome that develops as a result of a congenital heart defect that was never repaired is generally not treated by repairing the original defect, as it would increase the workload on the right ventricle and lead to a poor outcome. Lung transplantation or heart-lung transplantation may be performed when other treatments are no longer effective.

Long-term outlook with Eisenmenger syndrome:

Some individuals with Eisenmenger syndrome who have no other health complications may live into middle adulthood, and a few may survive into the fifth or sixth decade of life.

Considerations related to Eisenmenger syndrome include, but are not limited to, the following:

Pregnancy is not recommended for females of child-bearing age with Eisenmenger syndrome. Pregnancy may pose a high risk of death for the mother as well as complications for the fetus due to effects of low oxygen levels in the blood.

Any anesthesia and surgery is considered high risk and should be carefully planned. Collaboration with a cardiac specialist is recommended.

Air travel and high altitude exposure requires adequate hydration (fluid intake) and supplemental oxygen to prevent complications.

Severe headache, dizziness, syncope (fainting), or changes in level of consciousness should be taken seriously and evaluated emergently.

Smoking and alcohol intake are not recommended.

Coughing should be controlled or prevented with a strong suppressant medication to prevent risk of pulmonary hemorrhage (bleeding from the lungs).

Flu shots are recommended annually, and pneumococcal vaccine should be received according to the physician's recommendation.

Consult your physician regarding the specific long-term outlook for your child, teen, or young adult with Eisenmenger Syndrome..

Oxygen

2011-11-06T11:05:00.004-05:00

Oxygen is something that some pulmonary hypertension patients may need. Some patients need it more than others, some may only need it at night, and some don't even need it at all. I am one of those who was told to use it at all hours of the day, despite the fact that my oxygen saturation levels (sats) never get to 90%. Normal oxygen sats are from 95-100%. For me, because I have Eisenmenger's, it's pretty much my norm to be hovering in the high 70 to mid-80% range when at rest. When I exercise or vacuum or something more physical, I dip into the low 60s, sometimes even into the high 50% range. Yes, that would be deadly for any normal person, but I am not normal!! lol

I found out this past May that there isn't any proof that oxygen really helps Eisenmenger patients. I can actually understand why that is, since no matter how much oxygen I'm on, I will never get my sats into the normal range, and that especially goes for when I'm physically active. I thought hearing this news might mean that perhaps I could eventually wean myself off of oxygen. I've been wearing it for the past 10 years, though, so I was a bit leery. Now, I have always been able to take the oxygen off for awhile (and by awhile, I mean several hours) before I felt the need to put it back on. I've done it so many times, and I've never had major problems. But to go without it for a day? Hmmm, I'm not so sure about that!

So, backtrack to Friday afternoon around 3pm. I had come home after being out for a bit, and the oxygen guy was still at my house because his van wouldn't start. After I brought in my bags, I went out to say hi to him, and chatted for a few before he took off (someone had come to give him a jump by then). I went back in the house and filled the water attachments on the two large liquid oxygen tanks since they were empty, put the tubing on, and went about the rest of my day. Yesterday morning, I had a little bit of chest pain, which is unusual for me, and I tried to figure out what the heck I did to make my chest hurt. A few times, I've lifted something too heavy or did something too strenuous so that I ended up with pain the next day or two. I tried a heating pad for awhile, which didn't seem to help too much. But then I drove out to K.'s house in the afternoon around 2:30, and got back home after 10:30. I felt fine the whole time I was with him, but on the drive home, I could feel the pain again. So after taking a bath, I went to put the tubing back on. Now whenever I leave the house, or even take the oxygen off at home for a little while, I never turn the two tanks off. I just leave them running. So when I went to put the tubing back on, I realized no oxygen was coming out of the nose parts. I knew I hadn't turn the tanks off before I left for K.'s house. And all of a sudden, it dawned on me that I had never turned the tanks on from Friday after the oxygen guy left!!! I wore a cannula as decoration for 24 hours, with no oxygen!!! WHAT THE HECK IS WRONG WITH ME????? No wonder I had chest pain!! DUH!!!! Soooooooo, I went over to the tanks and turned them on to a little bit of a higher number than I'm used to, and since I've had it on since last night, my chest pain is much better!!

So the answer to whether or not I can eventually wean myself off of oxygen? I would have to say that is a no. It stinks to know that, and I kind of figured that I wouldn't be able to, but now I know for sure! I think what I need to do is start writing myself big notes to turn the oxygen on here and at rehab, since in the last several months there have been way too many instances of me wearing tubing without any oxygen coming out of it!! lol

Diagnosis

2011-11-06T10:25:00.001-05:00

Pulmonary hypertension may be suspected after having an echo, however, this is not a definite way to diagnosis PH. A true diagnosis of PH is done by having a right heart catherization (RHC). During this procedure, an accurate measure of the pressures in the lungs are taken to determine whether or not someone has PH.

Cool Dream!

2011-11-03T14:12:00.002-04:00

On Tuesday, K. told me that he saw a buck crossing near the area where he was getting his truck looked at. I was a little sad because I was hoping to see a buck when we walked along the trail a couple Saturdays ago. So we made plans to either try going Tuesday night, or maybe Wednesday, and also maybe this Saturday if the weather wasn't too bad. So Tuesday night, I had a dream:

K. and I were walking along a trail, and K. went ahead of me to see if he could find a shortcut. I stood waiting for him and looking around, when suddenly I heard a noise behind me. I turned slowly, and there standing so close was a huge buck! I tried not to gasp since I didn't want to scare it away, but I definitely dropped my jaw in shock. And instead of backing away slowly, I just reached out my hand. The buck moved a little closer and allowed me to pet it. I PET A BUCK!! Now, I know in real life you can't do that, but this was a very cool dream!! So, I'm standing there petting this enormous buck when K. comes back to find me hanging out with a buck! He was completely shocked himself! And then, I woke up.

Yesterday, I drove to K.'s to go for a short walk along the trails again. While we did see a doe and her fawn rather close, and 7 other deer, we didn't see a buck. I thought it was funny, too, that K. did go up a hill that was sort of a trail to see where it led, and I was listening for anything around me in case my dream came true!! Sadly, it didn't! Maybe we'll try for Saturday again, and hope for the best!

Abbreviations

2011-11-03T13:04:00.002-04:00

PH = pulmonary hypertension, a general term used to describe PH.

PAH = pulmonary arterial hypertension, which means the right side of the heart is affected. PAH can be treated by 9 currently available FDA-approved PH meds.

PVH = pulmonary venous hypertension, which means the left side of the heart is affected. Unfortunately, for PVH, many of the treatments available for PAH cannot be used to treat symptoms. These meds can actually worsen PVH patients.

Hope this isn't too confusing!!

It's November, And That Means......

2011-11-01T22:57:00.002-04:00

....it's PH Awareness Month!! Once again I'm going to try blogging every day for PH Awareness. I hope I can do it, since I've been bad at blogging every day!!

Pulmonary hypertension is high blood pressure in the lungs. It is rare and it is incurable, and can be life-threatening if not treated.

Anyone can have pulmonary hypertension. It does not discriminate by age or race. However, it does occur more frequently in women of child-bearing age.

Pulmonary hypertension symptoms include shortness of breath, dizziness, and fatigue. Simple daily tasks can become very difficult with PH.

Pulmonary hypertension is not a contagious disease. Very often, people with PH do not even look sick. For this reason, it's often considered an "invisible" health problem.

Clean Freak

2011-10-30T13:44:00.002-04:00

I spent the majority of my time on Friday and Saturday cleaning much of my apartment. Oh, I did the dishes and cleaned the bathroom, and vacuumed, but I also did a major dusting in 2 of my rooms, the bedroom and the living room. I have to admit that I did so much dusting as a kid for weekly chores every Saturday that it doesn't cross my mind to dust that often here. In fact, I don't remember the last time I dusted. Which is BAD. And I'm sure it's not good for my lungs. So, I spent a lot of time cleaning things, and throwing things out. I have a hard time parting with stuff sometimes. I see something I've been holding onto for years (sometimes decades), and every time I do clean, I think, "Hmmm, I could still use that," or, "Oh, I remember this!" And then I'd put it back where it was sitting forever. So, I chucked out a ton of items yesterday including jewelry (that was beyond tarnished), some stuffed animals, lots of old candles, candle stands, and some other stuff I'm not remembering. lol It felt kinda nice just getting rid of it! I also put some of my CD holders with tons of burned CDs into the other room, so that eventually I can get rid of all of them. I think most of the music I had on the CDs are already on my computer or mp3 player, and I hardly use a CD player anymore, so it's not like I need them. I should try to figure out a fun project to use them for! Anyway, I felt really accomplished that I got all that cleaning out of the way, and maybe I'll now try to keep dusting to once a week? Maybe once every other week?? Hmmmm. Not too sure about that!!

Unexpected Accomplishment

2011-10-23T23:49:00.003-04:00

Yesterday, I went to a park that had a lot of different trails you could walk, and it was huge. Now normally, I'm not always a fan of walking. Treadmill, sure. Walking down the street,fine. Going for a very long walk, especially when the temperature isn't all that warm, ummm, no. And that is my automatic thought, nope, I can't do it. Well, my biggest motivation to at least try it out this time was K. lol After getting some hot drinks, we got to the park, and began walking along one of the trails he thought I'd be able to do. It was nice, I'd honestly never been on trails before. We eventually started seeing deer, which was cool! I mean, I've seen deer before, but mostly dead on the side of the road. That is not cool! We kept going and going, stopping every once in awhile when there was a bench along the way. I was enjoying myself, not minding the weather too much, and not feeling too badly or terribly short of breath. Shocking for me!!

The trail seemed to go on forever, an K was trying to get us back to where we had started. He seemed to be getting concerned that I wasn't ok, when I had said I don't usually walk this much. I had to keep telling him that I was doing surprisingly better than I thought I would have, and I was happy about that. I could still tell he didn't seem to satisfied with that answer. Now that was starting to make me feel bad! Every once in awhile I would still just stop to take a moment, and then continue on again, but all in all, it was a good walk for me. And I'm incredibly thankful. I even thanked K. I am usually so doubtful in the things that I think I definitely can't do, and I think I need to just go and try them out again first before I say no. If it hadn't been for K, I really wouldn't know that I can go for long walks, as long as I pace myself. Right now, I'm feeling healthy enough to do that. Yesterday was proof! All my working out at rehab and recently on my treadmill at home seem to be doing something for me. And I'm pretty darn proud of myself for trying and succeeding!!

One Less Pill To Swallow

2011-10-20T23:31:00.002-04:00

A couple months ago, I emailed my PH doctor about possibly getting off of Coumadin, which is a blood thinner. I've been on it for about 10 miserable years. I was put on it the first trip I made to the Cleveland Clinic, and I just really have not enjoyed being on it. So I thought I would just ask about the possibility of being on a daily baby aspirin instead. I asked my PH doctor to consult my cardiologist. And then I waited and waited for an answer.

Several weeks later, I emailed my PH doc again about another question. I just wanted to know, for the heck of it, if I'd be able to get a tattoo. I sent the email off, and again I waited.

This time, the wait wasn't as long. Within a couple days, my doc emailed back. He said he hadn't even answered my first email (duh!). He said first of all, that he had consulted with my cardiologist, and they both were not sure I needed to be on Coumadin. My mouth dropped, and quite honestly, I started shaking with happiness!! WHAT?? I was just so excited!! Then he continued on to say that secondly, I could get a tattoo as long as I was off Coumadin, and I go to a reputable place (ok, duh again, like I'm gonna go to someone in a back alley. lol). I was a bit surprised by that answer, but found it kinda cool (of course, I need to actually work up the nerve to get one, so who knows if I ever will lol)! So after my initial reactions, I realized I needed to ask for a reasoning behind why it is they think I probably shouldn't be on Coumadin in the first place. My doc wrote back saying there is no hard evidence out there saying that Coumadin works any better on Eisenmenger patients than a daily aspirin. I decided to research articles regarding this, and he was right. I had a hard time finding stuff that definitely favored one treatment over another. I also asked other Eisenmenger patients what kind of blood thinning agent they were on, if any. Results were mixed. Some were on Coumadin. Some were on regular strength aspirin, some were on a baby dose. And a few were on both. Totally not what I would want to do!! So I wrote back to my PH doc and told him that I would definitely like to try an aspirin a day, but could he please let me know what dose to go on. And then again, I continued to wait!

Last week, after finding out my cholesterol was up again, and having to increase my cholesterol med (UGH), I wrote back to my PH doc yet again to ask about the aspirin dose. I told him I wanted to get off Coumadin so I could eat more salads and lots of spinach and try other things to lower my cholesterol that I couldn't try before because of the dumb Coumadin! He finally emailed me back, and said I could do the full strength aspirin (which is 325mg). Yay!! So last Wednesday, I bought a 130 count bottle of Bufferin aspirin! I started taking it that afternoon. However, by Monday morning, I got another email from my PH doc. He told me my cardiologist wants me to take baby aspirin. UGH! After I had just bought that big bottle of the other one!! I wrote him back saying that I feel like I'm stockpiling blood thinning agents, between the leftover Coumadin and now all that aspirin! LOL! Oh well, I went out and bought a smaller bottle of aspirin to hold me over until I can go back to Walmart for more. I'm just very relieved that I won't be needing constant bloodwork anymore, which was happening more often than not while on Coumadin if my numbers were off. I don't need to watch what I'm eating anymore, either!! Whoooo hooo!!

Where Are My Posts? Part Deux

2011-10-18T22:38:00.003-04:00

Yes, I'm slacking again. I would like to talk about a certain topic I've had a hard time with for a long time while living with PH, and that would be dating. Now I'm not a newbie at it, I have dated, and I have had a boyfriend, but it was years ago. Too many years ago. It was also before I had to wear oxygen all the time, and before I had to start taking major meds to treat PH. After all that happened, it was really hard to find someone who wanted to deal with everything. One person I found and truly loved was Euan, but he also had major health issues going on, and so it made it so much easier for us to relate and eventually fall for each other. And sadly now he is gone.

I've been on several dating websites, but most recently I've been on one that is totally free. I purposely put pictures up with me wearing oxygen, because well, that's the truth. I figure if someone doesn't like it, they don't have to say anything. Why lie and have someone find out later that I actually do wear it? Show up to a date and "surprise!" I wear oxygen??? I'd be a bit upset if someone did that to me! Anyway, I've had plenty of men send me messages asking me why I'm wearing it, if I have such-and-such disease, and even one who told me I need to take the oxygen off (idiot). Some men I've gotten back to, and they've been inquisitive, and some I've never heard from again. I never actually even got to the point where I'd want to meet any of these guys, mainly because many times, they'd stop writing. Well, ok. Thanks a lot! So it's always been a bit discouraging, and even though I always blow it off as if I don't really care to have someone in my life, lately it's not been my true feelings. I do want to have a friendship with a man that turns into a great romance, or whatnot. I just don't want to be alone, even though, if it had to turn out that way, I'd just accept it. What other choice do I really have?

Well, as unexpectedly as it's been, someone has come into my life, and in a matter of a month, I've gone from no dates to a bunch of dates. It's been fun, overwhelming, and unbelieveable at the same time! I'm trying to have to just go with it, but always in the back of my head is a feeling that something will happen and things will just end. I guess I've had too much of that in the past. This man actually admitted to me at one point that he's never dated someone with major health issues before, and that he's a pretty active guy. He just wanted to be honest. But he keeps asking me to do things with him, so I take that as a good sign that maybe he's willing to give this a try. It's still too early to tell what will happen, but I have to admit that I am pretty happy right now!

Where Are My Posts?

2011-10-09T23:46:00.002-04:00

I have been so neglectful in posting. Most of the time when I want to write, it's so late that I decide to maybe wait until the next day to do it. And then of course, I have so much to write about now that it would take me all night. lol

My sister got married on Sept. 24th, and it was a pretty perfect day all around for her and her new husband. Nothing really went wrong or haywire, and the weather was just so beautiful! I didn't have to worry about carrying around a sweater, since it ended up being sunny and warm. The ceremony was wonderful, there were lots of people in the church. The family pictures were taken in a very beautiful building in downtown Niagara Falls called The Giacomo. Bridal party pictures were taken at The Giacomo as well as the Niagara Falls state park. By the time we got to the reception, my feet were killing me from walking around so much that I took my shoes off and didn't put my replacement shoes on until after dinner! There were around 240 guests celebrating the wedding, and it all just went by in one big blur. Dancing was so much fun, and then before I knew it, the night was wrapping up. The day was just so fast, but I'm glad that it went well for Joan and Rick. I'm sure they had a very good time on their special day!

Several days after everything started calming down, I ended up getting sick. It wasn't a very bad cold, but enough to be really annoying. I was put on an antibiotic, thankfully, and finally just finished it up yesterday. The cold is gone now! I hope I don't have to worry about another one any time soon! I did get my flu shot and an updated pneumonia vaccine. One on each arm, on the same day. OUCH!!

I guess this will have to be good for now, I'm tired and achy and I need to get to bed! lol I am doing ok, just a bit too busy (or forgetful) to update! I'll try to do it more often!!

Mittens | Vote for the Next Pet Star - Photo Contest | Show Us Your Pet's Healthy Smile

2011-10-06T22:58:00.000-04:00

Mittens | Vote for the Next Pet Star - Photo Contest | Show Us Your Pet's Healthy Smile

I have entered Mittens into a contest!! He needs votes! lol The contest ends on Oct. 21, and you can vote once a day. He could win a year of cat treats, among other things. I'm sure he'd only care about the cat treats! LOL If you could click and vote for him, he would much appreciate it!! Thanks!! :)

Wedding Weekend

2011-09-23T13:52:00.001-04:00

My youngest sister gets married tomorrow! Last night was the rehearsal and dinner. My sisters and I went out for a drink afterward, and had a nice time together. This afternoon I'm going with Joan to get a pedicure. Tonight's a dinner with much of my family at my parents' house. And tomorrow is the big event! I sure hope I have the energy for everything! I might need several days to recover!

Happy Birthday To Me!! :)

2011-09-17T22:53:00.002-04:00

Today was my 36th birthday! I planned on it being pretty low key, and it was until Mandy asked if we'd want to go bowling after having cake at her house! I haven't bowled in a few years, and I thought it would be rather entertaining to watch the kids play, so I said sure thing! I left the house around 5:30 to pick up a Carvel ice cream cake at Wegman's. I got an Oreo one, which I thought would be the right size for 7 people, and there's a lot leftover. It was tasty! We headed to the bowling alley afterward, and got ready to play one game. The kids got to play bumper bowling. I think my score would've been a heck of alot better if I used it, too! LOL The kids were so funny to watch! H would dance to the music playing while trying to throw the ball down the lane. And S would just run up to the lane and let the ball go flying! The finished their game a lot quicker than we did. We kept having issues with the ball getting stuck in the gutter, and then our turns all got messed up. Eventually we finished. I think my score was 73. Terrible!!! lol But it was a lot of fun! I'm glad we ended up doing something together! My day was made even more special by all the wonderful comments left on my Facebook page. I had close to 200!! Wow!! It just made me feel so happy to know so many cared!! So, all in all, I think this year's birthday was a great one, and I look forward to what this year will bring for me until I have to celebrate year #37. :)

A Sweet Sign?

2011-09-16T23:45:00.002-04:00

I was sitting in my kitchen earlier today, just playing around on the laptop, when all of a sudden, I heard a music box go off. It was very brief, only maybe like 10 seconds, but enough to make me completely stop what I was doing and stare toward my hallway in shock. I didn't recall having a music box! So I got up and walked near the bedroom, trying to think what I might have in there that plays music. Nothing. I went down the hallway and stood in the entrance to the living room. There across the room sat the snow globe I received from Euan the first time we ever met in person. I went over to it, and turned it upside down, and gave the winding part a turn. It played the exact same music that I heard just minutes before. I haven't touched the snow globe in about 8 months. There was no rhyme or reason for it to go off. All I could think of was that yesterday was Euan's birthday, and tomorrow is mine. Perhaps he wanted to let me know that he was still around in spirit, when sometimes I wonder if he is really there. I immediately got teary eyed, and put down the snow globe, and just tried to be happy in knowing that he gave me a sign that he was thinking of me. I miss him dearly, but I guess he truly still stops by once in awhile!

About Time!

2011-09-13T00:08:00.002-04:00

In the mail today, I FINALLY got the letter stating that my Medicaid spend down was paid for the month of September. It's about darn time!! I will be sending my check for October a heck of a lot sooner, probably by the end of this week. Talk about stressing me out. I sure hope this doesn't happen every month!!

I also got a letter stating that my food stamps will be increased again next month. I guess they really want to make sure I'm eating. lol Can't complain about that, though!!

I got pretty sunburned on Saturday from being out in the sun for at least 4 hours at the air show. I admit I forgot to put suntan lotion on, but I used the spray my sister had for the kids twice. The sun won out, though. My arms would look a heck of a lot better if I hadn't been wearing a regular tshirt. Now it looks like I have a farmer's tan, which will NOT look at all good with my sleeveless dress for the wedding!! Today I tried sitting in the sun for about an hour, seeing if I could even things out a little. Nope. I'm hoping my arms will fade so I won't look so stupid. I'll see by the end of the week if it looks any better, or I'll be buying some sunless tanning lotion to hopefully make things look much better!!

The Air Show!

2011-09-10T22:36:00.006-04:00

I had one amazing day today at the Air Show! We got onto the air base after 9am, and explored all the many different air craft that was around. It was really neat! The air show started around 11am with an extremely moving tribute to all the first responders of 9/11. It was rather emotional, and very well done. Then there was about two hours of incredible performances by a variety of planes and jets! I was most impressed by the B2 bomber (stealth bomber), which is the triangle-looking jet pictured down below, and also by the Thunderbirds! They were the main attraction, and the crowd love them!! They are the last several pictures below. Hope you enjoy the pictures!! I had over 100 of them, but I didn't think I should put all of them up in my blog! lol I am just so glad I went today, it was a great day!!

September Weekends

2011-09-09T23:35:00.002-04:00

This week seemed to go by quickly, probably because Monday was Labor Day. The weather wasn't all that great, reminding me miserably that winter will be here sooner than anyone wants. I went out to lunch on Wednesday with Renee and Dee, and it was a nice time! We enjoyed our meals at Michael's Restaurant, and then talked forever after. Then we got back to my place and talked forever again! It's always so nice to have such good friends to share so many things with. I'm glad we were able to hang out for awhile!

Thursday, Mandy and I went to Wegman's for some sushi, since it was her first day of having no kids all day. Her son was all dressed and ready for school, with his backpack on, at 7am. lol A little bit too early!! I'm so glad he's enthusiastic about going, though! I hope both he and his sister have a great year!

Tomorrow I'm going to the Air Show at the base for the first time ever! I've always heard the air shows going on when I was growing up, but we just never went. Many of the jets were practicing today, and some of them sounded like they were going to crash right into the house. They were LOUD!! I'm excited to be going tomorrow, but my sister and her family are leaving at 8am since it's going to be jam packed, so I really must get to bed now!!! lol

Anytime Now!!

2011-09-07T00:09:00.002-04:00

My financial state gets turned upside down last month. I do all of these things to crunch numbers, lower bills, make arrangements for help, and within about a week, I'm somehow able to pay for my bills again, including the medical insurance.

And yet, here I am, still waiting on the good old state of NY to actually tell me my first payment to them was accepted, and that I will have my appts and such covered for September. Come on!!! I bend over backwards to make sure I'm not screwed, and yet, it doesn't seem to matter!!

My caseworker did tell me on Friday that I should just tell whoever I see that I did pay for my Medicaid spenddown for September so in case Medicaid doesn't cover my 20%, they can submit the bill over again. How friggin annoying! I guess that's what I'll be telling the lab tomorrow when I go for bloodwork. I just don't want to end up with bills for anything, because I DID what I was supposed to do!! ARGH!!!

Celebrating Your Special Day

2011-09-02T23:11:00.003-04:00

I got my first birthday card today, even though it's not until the 17th. It came from the place I had asked to help me with payments for my Medicaid spenddown, and I was surprised to get it. It was a very nice card, and I just wanted to share what it says on the inside:

The Wonderful Thing

About Your Birthday

Is celebrating footprints from afar

the magical miles of memories

that has made you who you are.

Steps that at times seem faded

and sometimes full of fear

your birthday is a reminder

that you did persevere.

So as you celebrate your life

reflect upon it with a smile

because the path that created you

was worth every single mile.

Gifts that can't be sent

for they will be with you all year long

as you make your next footprint.

*APJ*

I admit that I got a little teary eyed reading the card, because the words ring so true. While some people hate the fact they are gaining years and getting older, I relish it. My parents were told they didn't know how long I might live, so I thank God for every year I get, whether it's one of the best years ever, or one full of difficult obstacles I must overcome. I am so glad to be celebrating another year very soon!! And I always pray for so many more!!

September Days

2011-09-02T00:46:00.002-04:00

It's just barely into the 2nd day of September, and I'm already missing the summer. Summer hasn't officially ended by calendar standards, yet to me, whenever September hits, I immediately think fall. Which then immediately reminds me that the dreaded winter is coming soon. Booooo.

Tonight I did something I've never ever done before. I went to the movies. BY MYSELF. I checked to see if the final Harry Potter movie would still be playing tomorrow night (well, really waaaay later tonight, since it is almost 1am on Sept. 2nd), and it wasn't. OH NO!! I did NOT want to be seeing this final installment of the series on a much smaller screen at the cheap theater, and I definitely did not want to end up seeing this last movie just on my tv. There was only one time it was playing, and that was 9:40pm. So, I decided to just go on my own! And I have to say, I really enjoyed it! I felt so daring. LOL! I liked the movie, and I won't be giving away any details for those who may not have seen it yet, but let me just say this. I LOVE Professor Snape. I'm actually more sad to see that character gone than Harry Potter himself. Yes, I'm nuts!

This coming weekend is the last big shindig of the summer, also known as Labor Day weekend. Many people have off on Monday, and the last barbecues and cookouts will most likely be happening. I don't really have plans for it yet. My family is usually last minute at things like these. Maybe we'll do something? Maybe we won't. Considering I don't work, it doesn't really mean all that much to me to have a day off. I guess I don't appreciate it as much as some people do!

School begins here on Tuesday, and for my niece that means her adventure in 1st grade begins! Thursday is the start of full day preschool for my nephew. It also means total freedom for Mandy during the day!!! I think Mandy and I are going to breakfast once she drops the kids off, which will be nice! I know Mandy is looking forward to being able to do more stuff during the day while the kids are in school. I'm hoping maybe she'll be able to create more beautiful projects in her kiln!

I had a nice chat with a phriend this afternoon about working. She told me how she went back to school for a year to be a medical coder, and that she had gotten a job at a hospital full time. Then she was going to move, and she figured she'd get a job in that location, when the place she was working for offered to let her keep her job and do it at home. She agreed, only if she could work part time since full time was actually wearing her down. They said that would be fine, so she works 30 hours a week from home. She suggested going to my local vocational rehabilitation department, which I had been considering. They can try to help someone on disability either get retrained for something else, or find a job. I still would love to be able to do something on the computer and stay in my own house while making money. I have a lot more researching and considering to do, and hopefully something will come up!

I called once again this afternoon about my tongue. This morning when I had breakfast I could barely taste my food. That's never happened before. My doctor would like me to see an ear/nose/throat guy. I actually do go to one, and will see him at the beginning of October. Do I wait until then? What the heck? I've been dealing with this for so long, what's another month? In the meantime, while waiting for the doctor to call me back, I took 2 acidophilus capsules that I've been just swallowing, and broke them open. I poured the stuff inside into a cup, and mixed a very small amount of water with it to create a paste. Then I put some of the paste stuff onto my tongue and just kept it there for about 5 minutes. I rinsed my mouth out after, and repeated. I did the same thing again after dinner. Currently, my tongue feels funny, but it's not burning. HMMMMM. I think for at least the weekend I will keep doing this several times a day, and see what happens. I'm also just going to stop the cephalexin completely. I really think it's the root of everything, and well, I guess despite how it helps my skin, it's not worth losing taste in my mouth. Especially when I want to taste chocolate!!

I guess I'll stop this random blog post of topics to get ready for bed and call it a night!!

Changes

2011-08-29T23:48:00.002-04:00

Only a couple more days of August are left, and most nights are already feeling as if it's fall. I'm really sad that summer is ending. I mostly don't like the thought of it disappearing for another 9 months because for those months, I will be mostly cold!!! I know that soon I will be putting away my summer clothes and dragging out the fall/winter ones. I'll have to encase my windows in plastic to keep winter drafts from coming into the house. I need to figure out ways to keep my place warmer without blasting the heat (which I never do). I really need to find out how to keep my feet and legs warmer, because they are the parts of my body that just get coldest the fastest. Long underwear and 2 or 3 pairs of socks and slippers don't seem to be cutting it with me!! Before long, it'll also be bath season!! If only there was a way to stay in the tub all day so that I wouldn't be cold!

The weather changes are bringing me headaches almost every day, literally. Most of the time I don't take anything for them, but sometimes they are so bad that I must. Sunday I had a migraine all day. But usually I just function with them. Until the weather gets pretty much cold and stays that way, I'll be dealing with the headaches as best I can!

I do have to say that PH-wise, besides a little increased shortness of breath, I'm doing pretty good. The weather usually effects that, too, but so far I've been ok. I'm happy about that, it's one less thing I need to deal with right now!

September will be a busy month. I have some appts scheduled, including the local PH doctor. The annual Peach Festival is coming up, which I love to go wander! My birthday is in the middle of the month, and then the weekend after is Joan's wedding! So there is lots going on for the month, and I'm sure like everything else, it'll fly by quickly!

Painting Project

2011-08-27T00:06:00.001-04:00

I had purchased 2 paint by numbers in the spring to work on during the summer, since I didn't think I'd be so busy. Well, I was busy! So I didn't start the first one until the end of July. I worked on it mostly outside in the backyard on my new little table set. I finally finished it last night, and I love it! I plan on getting a frame and putting it in my kitchen. I started the other painting tonight, but that one is insane! It's so much harder than the other one, and will take much more time! I do love painting, though! I just wish I had a natural talent at it rather than relying on numbers!

What's Shakin?

2011-08-23T23:11:00.003-04:00

I was at my stove early this afternoon making some grits for lunch when my fridge started making a horrible noise. Now, all summer my fridge has been making noises off and on, sometimes sounding like it's thawing out, but when I check it, everything is fine. But this noise was totally different, and it almost seemed like the fridge was moving a little bit. I stared at it and said out loud, "What the hell is wrong with my fridge now??" I glanced in the computer room and Mittens was on the rug, frozen in the middle of cleaning, and staring at me wide eyed. Several seconds later, the fridge stopped making any noise. So then I thought, oh great, it broke! But when I opened it up, everything seemed fine. Hmmm, oh well. Back to cooking!

Minutes passed by, and something in my mind said EARTHQUAKE. And 10 minutes after that, I got an alert on my phone saying that an earthquake had indeed happened, but in Virginia! Whoa! I can't believe it could be felt way up here, although, had I not been standing in the kitchen, I may not have known it even happened! This is the second time in my life that I have felt an earthquake, which is so odd since this part of the country doesn't really get them. The first time I felt one was maybe 9 years ago, and I was sleeping but my bed started shaking and I woke up. I thought a huge truck had hit a pothole on the corner of my street near my house (which wouldn't be too surprising!). It was only a little while later that I read about an earthquake and that many people all over had felt it. In a way it's kinda cool, but I don't think I would really like to feel anything stronger than that!! I'm glad that no one was really hurt in this one, and the damage isn't anything terrible!

FINALLY!

2011-08-22T23:28:00.003-04:00

I got up at 9am this morning and proceeded to make several phone calls that I realized I needed to make today. The first was the Medicaid office in Lockport, who told me I had to call my caseworker in Niagara Falls to find out the information I need so I can send in a check to pay for Medicaid for September. Give me a break!!! I left a message for my caseworker, and guess what?? SHE NEVER CALLED ME!! I did, however, finally get the paperwork in the mail this afternoon!! I opened it up, read everything, wrote a check, and flew to the post office to mail it! I sure hope that it is enough time to get there, or else I'm going to be royally pissed off!! I swear, I accept this stupid changes, and I still get screwed over because the dumb state is late sending me the info. At least it feels that way!!

I did go out to lunch today with my good friend, Erin, and her daughter. We went down to The Silo, which was rather nice! Today felt like fall, which was not nice. Not for me, anyway. lol But it was sunny enough to be comfortable, and I was wearing jeans and a sweater. We ate and talked for awhile before finally heading back home!

I have to get up early tomorrow to put stuff on my porch for the Vietnam Veterans of America group. They sent mail a few weeks ago asking for donations, and they provided a bag. Well, I'm going to be putting out 5. I had a lot of stuff to just give away, and my one closet is so much happier!!!

My mom has her other eye surgery way too bright and early tomorrow, so I'm praying all goes well again!! Her right eye is good, and I'm pretty sure she's happy she's getting this done!! I'm sure I'll be stopping over again after rehab like I did last week to make sure she's ok. I'm also pretty sure she'll probably sleep all afternoon like she did last week. I can't blame her, she had to get up at 4am!! YUCK!!

Awesome Groom!

2011-08-20T15:18:00.001-04:00

I saw this on Yahoo! earlier today, and it made me cry. And I'm not a big cryer usually!! Sure wish I could find someone this thoughtful and sweet!!

Bill Shrinkage

2011-08-20T14:43:00.002-04:00

I spent Thursday afternoon on the phone with Verizon and Time Warner. Verizon changed my phone plan back down to 450 minutes (UGH), and also completely blocked texting for me. I am thankful for a smartphone that allows all sorts of apps, because I found a free texting app that actually works pretty decently. So, even if I didn't have to crunch my bills, I would have gotten rid of texting anyway after finding this app! In total, I'll be saving about $30 on my phone, which is good!

A friend had told me that Time Warner had a cable modem package called Road Runner Lite. He said he used it for awhile when he had to crunch bills. So I asked the service rep about it when I called, and she said that they never sign people up on that package if they are using wireless service because we would call and complain about how terribly slow it is. What she ended up offering me was an upgrade to what I already had, but for almost $15 less a month. Ooooook, sign me up!! Even though it's only for a year, well heck, it's a year and I'll call them back next year to see what else they can offer me to keep my bills lowered!

I was hoping my caseworker would return my Thursday afternoon call, but she did what I figured she would do: called me the next morning while I was still in bed. I got my glasses on and my robe before I answered the phone! I wanted to know exactly what to do with these green slips I had received, and if the amount I had to pay was really $41 since I had yet to get something in the mail stating what was happening. I need to make sure I send out payments 10 days before the month I need the spenddown, so in order to pay for September, I need to send a check out by Monday at the latest!!

***BREAKING NEWS*** I decided to check my mail as I was typing this, and saw a letter from Social Services. However, it still does NOT explain what I owe!! For crying out loud!!! What the heck????? Guess I need to call yet again on Monday to find out what to do about this. So darn frsutrating!!!

Anyway, I think I have it down to just being able to pay my bills, and nothing much leftover for anything else. I'm still trying to figure that part out. I can either try to do work from home jobs, or maybe I might actually make a jewelry business. Still so much to figure out, but at least I know I won't be homeless, I can still talk to people on the phone and the computer, and I will still have food. I should be happy with that, right??

Guess What Came In The Mail?

2011-08-18T00:19:00.003-04:00

I knew that after typing about not receiving information about the Medicaid changes yet that I would probably get it today. Sure enough, when I checked the mailbox, there it was. I don't understand exactly what I need to do, so tomorrow I will be calling my caseworker, and hope to heck she won't take another week to get back to me. Sigh.

I See You

2011-08-17T12:34:00.002-04:00

My mom had her first cataract surgery yesterday, on her right eye. My parents had to get up at 4am to make sure they were at the place by 5:30. Why in the world do they start those surgeries so darn early???? I'm very relieved that I didn't have to bring her just because I'd be a walking zombie for a few days!!! Everything went just fine, though! I went over to the house after rehab and had some lunch, helped my mom get some things for her lunch, and then she went to lay down in her bedroom. I stayed for a couple hours doing updating on her computer, and I also washed the dishes before I went back home.

This morning my mom had to get the patch taken off, and when I called to see how she was doing, she told me how shocked she was that she could see so clearly! I'm really glad that she's able to see so good! So, I'm hoping next week's surgery goes just as well for her, so she can see almost perfectly with BOTH eyes!!

Waiting and Planning

2011-08-17T11:32:00.002-04:00

I kind of took the weekend off from really stressing about my finances, and spent a great two days in Lewiston at the annual Art Festival. The festival is one of my favorite things in the summer! At least 100 artists set up booths with a wide variety of artistic ideas, everything from glasswork to paintings to jewelry to woodwork, etc, etc. That's just a whole bunch of talent gathering together!! This year, my sister Mandy actually had a booth!! She had her beautiful jewelry and glasswork, and she really did well with sales! I think she's already trying to plan some new ideas that she'll be able to include for next year if she's able to get a booth again. I'm so happy for her, and very proud that she could participate!!

Sunday evening I went to dinner with Joan, my cousin, Ryhan, and my Aunt Jane, who were both in town for a couple days. We went to Applebee's, and Ryhan asked a ton of questions about the wedding, and Joan moving to Canada, and where they were going on their honeymoon. I was very sad at her answer about the honeymoon: they are taking a 14-day cruise to Hawaii. :( I was hoping that 15 years of saving for Hawaii would at least make my dream of going there come true, but there's no way to really save for that now. Well, unless I can figure out a job I can handle that would allow me to pay for my bills and also save for stuff. I just wish I was able to go!!! Not sure if she can just stuff me in the luggage, I'm not that big!! lol Anyway, after dinner, we went to DeDee's for ice cream, and shared laughs outside on the patio. It was a nice way to end the weekend!

Here it is, Wednesday, and I still haven't gotten paperwork about this big change that's supposed to be happening. Of course, the mail hasn't come yet today. I just want to make sure this is really happening. I can't understand why I haven't gotten anything yet, my caseworker told me she would send it out to me so I'd get it this week. It would only take a day to get here!! I have also asked someone else I know who works in Social Services if she could find out any details, but her department is moving this week, so that might take some time, too. So, I'm kind of just waiting for proof as I make plans on how to readjust my finances. And, at the same time, I'm trying not to stress out!!

Surprise! You're In The Hole!

2011-08-12T17:00:00.002-04:00

On Monday, I received a letter about my food stamps, and I knew something was wrong. According to the paperwork, I would be getting more money starting next month for food than I thought I should be getting. UGH, it got messed up again?? After reading the letter, the reasoning for the extra money was because I would be paying for Medicare Part B premiums. I knew this was wrong, because Medicaid pays for those premiums. So, I tried calling my case worker on Tuesday. Of course, I had to leave a message with her. Since I hadn't heard anything, this morning I just decided to write a note and send it to her in the mail. I got it all ready to go, and then got a call from her. Wow, surprise! I told her about the notice and what I thought was a mix-up, and she said that she would adjust everything and there would most likely be a change, which I totally expected. So, I went on about my afternoon, spending a couple hours painting outside while it rained around me (I was under the garage door).

I went inside to take Revatio and I got another phone call from Mrs. L. After explaining it several times to me, I realized I was getting really shitty news. It breaks down like this:

I get $944 a month in Social Security Disability (SSD).

The Medicare Part B premium is $115 a month, which used to be paid for by my Medicaid. However, now I will get this taken out of my SSD check every month, which means I only have $829 for my bills.

Also, if I want to keep Medicaid, which I MUST keep, I also need to write a check to NY for $41 a month so that I don't have to worry about things such as paying for oxygen and copays for doctors and tests that I need to have done. So, that leaves me $788 a month for all my bills, gas for the car, money to buy stuff I need (like hair care products, vitamins, Mittens' food and litter, etc etc). Isn't that lovely??

Now I'm sitting here trying to think of what other bills MUST be paid, like the rent, student loan, electricity, etc, and what bills are "frivolous." I guess that would be the internet and tv. What the hell am I supposed to do?? I was already struggling every month trying to figure out how to pay for everything, and now I'm $150 in the hole every month just for medical, which I obviously need. I did call a group called Caring Voice Coalition, which might be able to help me pay for the $41 a month. It's not a lot, but it's something, and if they are able to do it for me, I would be really thankful. In the meantime, I guess I can look for part time work and hope that it won't wear me down eventually. This really just sucks big time!!!!

Wide Awake

2011-08-10T01:09:00.003-04:00

It's 1am here, and I feel wide awake. I had a bad headache after dinner, so I finally took an Excedrin for it around 8pm, which I knew would probably keep me up later than usual. Considering I was pretty tired almost all day, I find it ironic that now I can't sleep. Sigh.

Yesterday, I brought Shelby to the vet with mom. Shelby had her laser treatment, but I'm wondering how much it's really helping her. Her back leg keeps giving out often, and I feel bad. I don't know how much pain she's really in when that happens, but I'm hoping it's not a lot. No matter what, though, Shelby always has a cute little smile on her face. I think that makes it so hard to know what to do for her, because that face makes it seem like she's always happy!!

By the way, the sister kitties were gone. However, they had 2 more kitties in there! A long haired black kitty and a short haired orange kitty occupied the cage. When I went over to look at them, they were both sleeping together. The orange kitty had it's paws wrapped around the black kitty. It was just so adorable! Still can't have them, though!!

I had to bring my mom to her doctor's appt in the afternoon, but before we did that, we stopped at a jewelry store called Firth's to see about selling some gold. I brought in everything I had that looked gold, even though I knew only a few pieces were the real thing. Most of my rings were sapphires, but I did have one that was a heart-shaped oval. I had them take out the stones, and weigh the gold that was real, and I ended up with $62.40. Not too bad. I'm going to save the money, and whatever other money I can save up, to have a couple of custom rings made. I know it's going to cost a lot. I just hate gold jewelry, and didn't think it would be useful to hang onto the gold when I don't wear it. I am hoping I can get something made in either white gold or silver. I'll have to shop around to see which jewelry place can accomodate me!

Today was a rainy day, which we've needed, but it made me tired! I felt like sleeping in, but I got to take a shower and get ready for rehab. My exercise routine helped a little, but I still felt tired when I got home. Despite that, I did 2 loads of laundry, hosted chat, and made lunch before I finally took a nap around 3:30. The rest of the evening wasn't too bad, except for the headache!

It's started to storm here, so maybe I'll go lay in bed and listen to the rain. I'm sure that'll make me sleepy!!

Finally, An Answer (Maybe??)

2011-08-06T00:34:00.003-04:00

Thursday I was discussing this situation with my sister, and I brought up how I was wondering what the heck was still going on with my tongue. I told her I wasn't really sure now if it was the pill that was the culprit, considering it's been 2 months of not taking it, and I wanted to chop off my tongue on Tuesday b/c it was hurting so bad. I said I was looking up oral thrush again, and still, none of the pictures I saw really represented what my tongue looked like. However, when I stuck my tongue out at Mandy (no, not to be mean, just to show her!!), she said she thought I had it. Why? Well, she had 2 kids that had it when they were babies, and she remembered what it looked like. Sooo, when my nurse called me on Thursday afternoon, I told her what Mandy thought, but I did say I wasn't really totally sure. My nurse said she'd ask my doctor, and had called me back 10 minutes later saying my doctor wanted me to try Protonix, which I guess was for acid reflux. I was thinking to myself, huh?? I know that's not my problem! So I asked if I could just be checked for oral thrush first before taking this med, and my nurse put me on hold, and got back with me 2 minutes later with an appt to see my doctor on Friday morning at 11. Yes!!

I got to my appt, was brought back into the room, and eventually saw my doctor. She took a look at my tongue, and said that while I wasn't presenting the typical signs of oral thrush, that my tongue was definitely irritated a lot, and so she was going to treat me as if I had it. This meant an oral rinse, and she wanted me to do it for 2 weeks. So then she tried saying what else could possibly be going on, and she started bringing up acid reflux again, but I stopped her in mid-sentence. I reminded her that I have been on cephalexin for my acne for about 10 months, and she got this huge surprise look on her face and said, "DUH!!! Did I know that???" I said it should be in my chart, and she started apologizing for either missing that part or just forgetting that I was on this med. Now, part of me was like, no problem! But the more I think about it, why wasn't she paying more attention to that??? Anyway, she now totally felt that it was definitely the cephalexin causing the problem, which I had thought about several months ago. But after stopping it for a couple months, nothing got better, so I figured it was ok to take again. Argh!!! What is frustrating is that it IS helping the acne a lot, and I don't want to just stop taking it. So, she told me to call my dermo and ask for a lower dose of the medicine. I will do that on Monday since I didn't get a chance to call after I got home. Sooo, maybe with this rinse that I have to do, things will get better after 2 weeks??? I certainly hope so! It's been almost a year of dealing with mouth issues, and I'm honestly ready for something to be normal in my life again!!!

And the funniest part of the visit to my doctor was when she was leaving the room. She told me to tell "Dr. Mandy" that she was right!! Of course, I told Mandy later and she told me she'd send my doctor (who is also her doctor) her fee! LOL!

July, Over And Out!

2011-07-31T23:40:00.002-04:00

In 20 minutes, a new month begins. I can't believe how incredibly busy July has been. I remember during the winter, I kept trying to think of things to do to keep myself busy during the summer. I bought 2 paint-by-numbers so I could do them since I have not been working on jewelry much lately. I thought I'd have plenty of opportunities to do them, but I've only worked on one of them twice so far! August promises to be a bit less chaotic, so perhaps I'll be able to do more things around the house, and the paintings! I just don't like the fact that this summer is disappearing quickly!!

Is This Thing On??

2011-07-30T17:40:00.003-04:00

Here we are, a week later since my last post. I swear, I had very many good intentions on blogging this week, but then either something came up and I'd forget, or I'd just plain forget, or I would get ready to do it and figured I was too tired. Ugh. I think part of it is laziness, too! Anywho....

Sunday was Joan's last bridal shower in Canada, and it was nice. It was a cash shower, and there were no games involved, but we sure did eat. If what we had at the shower is any indication of what the reception's going to be like after the wedding, then I might as well start fasting now. Holy smokes, the food just seemed to keep coming! There was antipasto (antipasta??), which included lots of tomatoes and cheeses, ham, pasta salads, etc. Then bowls of pasta were brought out. After awhile, they brought out chicken covered with some kind of mushroom and bacon sauce, little potato puff things, and cooked green beans and carrots. And a salad. Everything was pretty good, although I didn't really enjoy the chicken, but I ate what I could anyway. Then everyone was told they could line up to get tons of baked goodies over in the one corner of the room. There were so many cookies it wasn't funny. This type of table will also be at the wedding. I am not a big fan of many Italian cookies, but there were a few I found tasty after Mandy went and brought us a plate to share. There was also the cake, which was very tasty! It was a vanilla cake with fresh strawberries, and the icing was so light, very good! After eating, Joan made a little speech thanking everyone for coming and for the support for her and Rick, and everyone started leaving after. We all did get prizes, we just didn't play names. Instead, they drew numbers from a bowl every time the course of food changed, and you could go to the back of the room and pick something. I started out with a 4-glass set, and then exchanged it with Mandy because I could really use some new measuring cups, which is what she picked out. So, it was a pretty calm shower compared to the one we had with our family the weekend before!

The rest of the week I spent driving. Between getting groceries, going to rehab, bringing my mom to a doctor appt, going to a few stores, and bringing Shelby to the vet, there was only one day where I had a break from being the taxi. That was Wednesday! On that day, I did a couple loads of laundry (which were both towels), and hung them up on the line outside. Then I took out my table set and painted my paint-by-number for a few hours. The weather was perfect, and it was very enjoyable to be out there! It was also relaxing!

I'm trying to enjoy my weekend without worrying about what's going on (or NOT going on) in Washington with the debt ceiling crap. So far, I haven't seen any positive Yes or NO's as to whether I (and millions of others) will be receiving our Social Security check if the debt ceiling isn't raised by midnight on August 2nd. The thought of not being able to pay the majority of my bills freaks me out a little. Ok, a lot. I know that I wouldn't be the only person in the same boat, though. I think the whole thing sucks, though. NO politician is safe in the next election after this shit is done!!

Ok, I'm off to try the jambalaya that's been cooking in my crock pot for the last 5 hours! I'm excited to try it, and I sure hope I like it, since I have enough to feed around 15 people!!

Just Some Thoughts

2011-07-23T15:59:00.002-04:00

I've been having such a lazy Saturday, and it's been rather nice. I didn't have to worry about getting up early to go to rehab, or bring my mom to the doctor's, or bringing Shelby to the vet. I got up a little late, read the news in bed for a bit, and eventually got showered and dressed. I didn't sit down for breakfast until it was 12. I really haven't done too much since! I shut the a/c off in my apartment, despite the fact that it's currently 90 degrees and feels like 97. Am I crazy? Well, most people would say yes. lol However, I'm so sick of the a/c being on, that I just wanted to use the fan. I'm a little warm, but not uncomfortable. I do wish it would rain, though, so maybe the mugginess would go away!

I got a text alert earlier stating that Amy Winehouse was found dead in her London apartment. Now, while I cracked a joke about it, that maybe she should've said yes, yes, yes to rehab, I have to admit that the situation is rather sad. And, who am I to judge her? I have no idea what it is like to have an addiction to drugs and alcohol, just as much as there are many people who have no idea what it's like to have pulmonary hypertension. I would hate it if someone made fun of me because of my condition, and I'm sure there have been people who've made some sort of unkind remark. So I apologize for my snide comment about Amy's poor misfortune of having been an addict. There are some people who are able to get help from the powers of being an addict, and there are some people who fail miserably because addiction is so strong. Sadly, it seems that Amy just couldn't win that battle.

My mom is supposed to have cataract surgery in August, a week apart for each eye. I don't know why I'm nervous about her having it done, but I know that it's been a pretty routine procedure for thousands of people. And we are all really hoping she can see so much better!! She should be all healed by the time Joan gets married in September, and I'm sure she is going to be so thankful she had it done.

I brought Shelby to the vet again yesterday with my mom, and those adorable kittens were still there in the lobby. Silly me fell in love with them even more after I went over and played with them while Shelby got her laser treatment. They are just too cute!!! I KNOW I cannot get these kittens, but it makes me think about the future when Mittens isn't here anymore. I know (and I hope) that is still many years to come, but I did decide awhile back that I would never get another cat. Seeing the kittens makes me sort of change my mind. And then I get to wondering if I do decide to get another cat, should I get two?? I see how much the little kittens play with each other, and it's just so entertaining, and so I think that maybe having two cats would be a good idea. But I'm getting WAAAAY ahead of myself!!! lol Shelby has another appt next week, and I'm sure I'll be bringing her again. I really hope someone has given the kittens a good home by then!!! lol

Joan's last shower is tomorrow, in Canada. The two showers she's already had were really different, but both very nice, so I'm sure the last one will be the same way! I'm expecting there will be a ton of women at this shower, considering Rick comes from a big Italian family!

Well, I'm off to read the book I started reading yesterday. It's considerably better than the two Danielle Steel books I finished. I used to love her books when I was younger, but I don't know, maybe it's just me, but I think her writing style sucks. Either that, or I grew out of it!! Happy Saturday!

Melting

2011-07-21T23:53:00.002-04:00

Today was very hot here. Opressive. Although there was a lot of wind going on (which I think was a saving grace from downright hell), the temperature was in the 90s, and it felt more like 108 at one point. It doesn't get THAT hot here! I know I'm not supposed to really be venturing out in weather like that, but I had to bring my mom to her eye appt at 9:30, so we left at 8:30. We didn't get back home until almost 4. After the appt, we ventured around the mall for a couple of hours, something I haven't done in, years?? I just don't shop like I used to! We met my friend, Renee, for lunch at Panera Bread, and had a nice time chatting and laughing! Then we went into the Hallmark store, where I bought a gift for Mo's baby shower. On the ride back to the Falls, my mom fell asleep. I wish I could've, too, but I was driving!! We stopped at Mandy's house for a little bit, so my mom could give the kids shirts she bought for them. And then we finally got home.

I waited until 8 tonight to go water all the plants, and it still felt like it was 100 degrees. But the sun was vanishing, and the winds were still strong, and I have to admit that I LOVED it. I got everything soaked, and then I sat on the porch and just enjoyed the heat for a little while! I didn't want to go back into the air-conditioned house, which I'm just sick of being in! Hopefully just a couple more days of needing the a/c on (for me anyway), and I can shut my vents once again!! Off to bed now, since I have to bring Shelby and my mom back to the vet tomorrow. Maybe the cute little kitties will still be there???

Trapped

2011-07-19T23:00:00.002-04:00

I love summer. It's my most favorite time of year, and that's because it's warm! And sometimes it's really really hot. And sometimes it's unbearably hot, but I still love it anyway! I try so hard not to have the A/C running for myself in my apartment. There are so many days where I can have all the windows wide open, and a nice breeze flowing through the entire place. I usually run the A/C for the person upstairs and close up my vents. I just really hate the coldness, since I already get enough of that in the winter!!

This week, though? It's been brutal the last couple of days. It's mostly the humidity in the air. And as much as I truly didn't want to do it, I had to open up all the vents in my place and put the A/C on for myself and Mittens. I just can't breathe when it is that bad! The next few days are going to be in the mid-90s, and there's no way I can let a breeze flow through the house. There might not even be one! So, for this week at least, I will feel trapped in the apartment being able to breathe, but also freezing at the same time. I guess I'll wrap myself in a blanket or put on a sweater, which I think is utterly ridiculous this time of year!! I will also hope that it'll get to the point where I can open up my windows wide once again, and I won't need to worry about cooling the place off!!

Calmer Days!

2011-07-18T23:06:00.002-04:00

Well, my busy week ended on Saturday night when I got home from being in Horseheads, NY, for Joan's bridal shower. We had no idea how many were actually coming since I only had one person RSVP! We ended up with about 25 people, I think, and it was a great time! I saw some family I haven't seen in a long time, and some I don't really remember. lol The food ended up being really good, the games were so much fun (especially toilet paper bride!), and Joan got some very nice gifts. The day was a nice one, and I was very happy to end the week with my sistores all together, even for a short time.

This week brings some relaxation, and also some very hot temperatures. It's supposed to be in the mid-80s to 90s all week, but also humidity. I wish somehow the humidity could be low! Then I'd be able to open my windows, even despite the heat. However, I had to put the air conditioning on for my apartment this morning, not just for my neighbor upstairs. I just couldn't breathe well. By the end of the day, I was mostly freezing. I had a blanket on while watching a movie tonight! I think that is just ridiculous, in the middle of summer!! lol Looks like I'll have to keep the air on for most of the week, which just makes me sad. I truly believe windows should be open during the summer, considering I have them shut for too many months while it's cold outside!

I have to bring my mom to a couple appointments this week. She's not supposed to drive right now, so I'm the chauffeur as much as possible. She's driven me all over the place for so many years, that I don't mind mostly. As long as something else isn't going on for me, why not??

Today I brought my mom and Shelby to the vet for Shelby's laser treatment appt. Shelby is 14, and she has a lot of arthritis pain. Instead of putting her to sleep, the vet asked my parents if they'd like to try laser treatments to help alleviate the pain. Well, it seems to be working, and now they are giving her the treatments about twice a week. Anyway, we got into the waiting area, and there was a large cage in the corner with these two adorable kittens. They were sisters, and only about 2 1/2 months old maybe. Oh my gosh, my heart was melting as I was trying to play with them! Even though they were from the same litter, one seemed to be a short-haired cat, and the other was long-haired, which I thought was odd! As much as I thought they were so cute, I could not get them for a few reasons: 1) Mittens would kill me, 2) Mittens would kill the kitties, 3) I do not have the $100 to buy them. I also would not have enough money to even feed them and buy the litter, as I have a hard time doing that sometimes with Mittens (although he's never gone without!). Also, the kitties were spayed and had shots and stuff, but they were not declawed. I would have to get them declawed, as I'm on a blood thinner, and getting scratched would not be good! I already got clawed by the one kitty and my finger bled all the way home. lol So, the kitties were good entertainment for me while waiting for Shelby to be done, but there's just no way I could keep them!

Well, time to read before bed. I'm trying to finish a book I don't really like so I can read something better!! lol

Almost Near The End

2011-07-15T00:50:00.002-04:00

Today Lisa came over for maybe 20 minutes or so before I headed off to rehab, and her little guy rode a Thomas train car down the block with her. He tried to find Mittens when they got in the house, and when he got a little too close for Mittens' comfort, Mittens ran out of the cupboard and cried all the way to the bedroom and under the bed. Oh well, at least he didn't bite anyone!

I went to rehab and did a good workout, but I was pretty exhausted when I got home. I had three things I wanted to accomplish for the bridal shower on Saturday, but the first thing I had to do was take a nap after I watered all the plants outside. Mittens hung out with me on the bed, but I just couldn't really doze. I spent maybe half an hour just laying there, and then decided to get up. I made hummus with roasted red pepper. Done! Then I started working on one of the games I'm going to do, when I heard a knock on my door. Lisa was back for a bit! She actually helped me with one of my other tasks, which was to wrap all the prizes for the games we were doing. Yay! Meanwhile, she had brought her camera over so I could "steal" some pictures, since I don't really have anything recent of her little guy in my frames in the living room. We chatted for awhile, and then she went down to the basement to go through my storage bins of teaching stuff. Sadly, she didn't get too far when my dad called to tell me that her son was wailing for her. So she walked back down to the house, and I finished working on the game stuff. After that, I made myself go lay down again, and I actually fell asleep for about half an hour.

Tonight, I went out for drinks with my sistores! We haven't done that in forever, so it was just so nice for the four of us to be together. We laughed and shared stories, and we also exchanged names for Christmas. We had to do it like five times because we kept getting our own names. lol I'm really glad we were able to go out for a little bit. I just wish we had more time to spend together!

Tomorrow we head to my Grandma's house in the early afternoon, a few hours from here. Saturday afternoon will be the shower, and then probably a couple hours after it ends, we need to head home with Mandy and Joan since they aren't able to stay until Sunday. I'm actually glad about that, because although I have had a great time this week with my family, and being busy every day, I'm worn out. I hate this fact really, that I just can't seem to keep up with it all. I'm not breathing any different, my lungs are fine (the pulmonary hypertension is in control), but I'm just exhausted. I'm not getting as much rest time as I'm used to when I've got nothing going on. So I'm relieved that I'll be able to not worry about doing too much next week once I get through this weekend!

Tired!

2011-07-14T00:12:00.002-04:00

The last couple of days, I feel as if I haven't been living here. lol I spent most of the day out of the house yesterday, and I was out most of the morning/early afternoon, and then evening today. I'm trying to catch up on rest in between, but I've got stuff that needs to be done around here, so I'm starting to wear myself out. And poor Mittens seems to be missing me when I'm gone because he bashes my legs with his head for awhile when I get back! At least we did get to take a nap together today. I miss him, too! It's nice to be busy, but I also miss the relaxing I usually do. Hopefully that'll change next week!!

Tomorrow I'm hoping to get some things made for the bridal shower we're having on Saturday for Joan. It's our family bridal shower. We're going to have some finger foods, and I'm going to make hummus for it, so I need to get that done tomorrow. I also have to retype a couple games I found since I'm adding a few things to them. And, I have to wrap the prizes for the games. I don't have time to do this on Friday, because we have to drive to my grandma's house in the afternoon, and that'll take a few hours to get there. Then we need to go shopping for the food and whatever else we need to get. So the next few days are busy as well!! But tomorrow night, my sisters and I are supposed to be going out for drinks. I'm looking forward to that! I hope we'll have a great time!!

Busy Family Week!

2011-07-12T01:12:00.001-04:00

Here it is, the middle of July, and another busy week is planned. This time, most of my time will be spent with my family. This includes Lisa, and her little guy, who both arrived in town tonight for several days! It was so nice seeing them even for a short while at my parents, and I look forward to the week ahead. I know one night my sistores and I are planning to go out for dinner and drinks! On Friday, we'll be heading to my grandma's for a night, and Saturday will be our family bridal shower for Joan. So, lots of stuff going on yet again, and I'm keeping my fingers crossed that I'll be able to keep up!

The Things Kids Say!

2011-07-06T00:35:00.002-04:00

Yesterday my family and I hung out at Mandy's house for the evening, eating good food and sharing lots of laughs. The kids were quite energetic, and played in their pool for a very long time before deciding they wanted to have dinner. While we were all in the garage, Mandy told us how her son, who is now 4, was playing one day and came up to her with a beaded necklace under his nose and around his ears. He said, "I'm Aunt Colleen. I have a breathing problem." We all burst out laughing! I thought it was so cute and funny at the same time!

Then a little later, my niece, who was sitting next to me, was in mid-sentence trying to tell me something when she said, "Ooh, your lips are kind of purple, Aunt Colleen." Well, I hadn't been wearing my oxygen for a bit, and so I guess it was time to go put it back on. lol I'm at least glad that both of the kids know enough that I have a health problem, since they've seen me since they were born with the oxygen and stuff. They don't feel funny about it or scared! And obviously, they aren't too shy about pointing it out, either!! LOL

What Would You Do If You Were Normal?

2011-07-05T23:58:00.002-04:00

Today as I was driving to pulmonary rehab, I kept seeing people out exercising. Some were just casually walking. Some were power walking, pounding the pavement in a serious stance as they sped down the street as if there was a fire behind them. There were a few who were running quickly, and a few who were jogging. No matter what they were doing, they were at least burning some calories and I'm sure their bodies were appreciating it. And as I watched these people (and the road, I was also watching the road!!), I thought to myself, "What would I do if I were normal??"

Now, by normal, I certainly mean physically! I have spent many times pondering this very question, and most of the time I've come back to wanting to do one thing if I were ever go through a transplant or, best of all, there was a cure for pulmonary hypertension: running. Yes, I ran when I was a little kid, and yes, I got completely exhausted doing it. But, in the last couple of decades, running is something I don't even try to attempt. Since I know exactly how I feel when running, and I HATE feeling that way, I tend to avoid it!! So that is one thing I know I would love to do if I were a physically normal person!!

An Awesome Evening!

2011-07-03T01:56:00.000-04:00

I had heard over a month ago that a Canadian band I just LOVE was coming to play for free downtown on July 2nd as part of a free concert series through the Hard Rock Cafe. I was so excited!! I have tried twice to see Our Lady Peace in concert, and twice I wasn't able to go, even though I had the tickets. So I really wanted to see them! My friend, Dee, and I kept tossing the idea back and forth between last night and this afternoon. First we didn't know how hot it would be. Then we didn't know if it was going to rain. Then she wasn't feeling too great with her sinuses and stuffiness, and then I wasn't feeling top notch. In the end, we just decided to wing it. We went downtown, actually found a parking spot I could mostly deal with, even though we still had to walk quite a bit, and we headed to the new TGI Friday's that just opened up Tuesday in one of the hotels. It was crazy busy! We sat at the bar, which was a little better, but not by much. We waited forever for our food, but enjoyed it once it finally arrived. When we paid and left, the waiting area was packed. I think since the restaurant is still trying to work out kinks, the kitchen fell behind, and it caused such a backup of people waiting to get in!

We got back outside and headed toward the area where we thought the band would be playing, and could actually hear one of the opening bands singing. And then I realized the stage was straight ahead of us. There were a ton of people already. We walked past the convention center, and found a bench to sit on for a bit. We could see the stage from there, and decided to just stay there. There wasn't any seating near the stage anyway, and we weren't surrounded by swarms of people, and we could hear perfectly. Whoo hooo, worked for us!!

After waiting for the current band to finish playing, the next two bands to get up and play, and the fireworks display from the casino, Our Lady Peace FINALLY took the stage!! I think it was just after 10pm. Dee and I were so excited!! About 4 songs into the show, we started seeing lightning. The band finished up a song, and the lead singer (Rainn) said that since there was lightning, they were going to take a break for a couple minutes and pray for it to pass. Well, a couple minutes turned out to be 45 minutes. They kept announcing to the crowd to hang on and wait to see if Our Lady Peace could finish their set after the lightning passed. It never did rain, at least!! Tons of people did leave, but there was still a crowd by the time the guys came back out! I was so happy!! They played several more songs, and they played past the curfew time that was given since the lightning had ruined the original plans! The last song of the night was my absolute favorite song by them, called Starseed!! I was just so happy!! Did I mention that already?? I sang along to the song, and then the show was over, and Dee and I made the long trek back to her car. I'm SOOO glad we decided just to go ahead and see the band play. It was such a FANTABULOUS evening!!!

Oh Snap, June's Over!

2011-06-30T23:08:00.004-04:00

I'm finding it really hard to believe that June will be over in another hour. This month was just so busy with things going on every weekend, and things going on most days during the week. I don't like that it's already July!! It'll be another busy month for us, with 3 bridal showers for Joan, a baby shower for my friend, and I'm sure other stuff in between. My sister, Lisa, will be up for about a week with her little guy, so I'm looking forward to that! I just really hope the days will go by a bit slower, because I want to enjoy my summer!!

This past weekend was such a great one! Saturday and Sunday was an inaugural art and music festival on Main Street downtown, and it wasn't too bad. Mandy bought space for a booth, and she actually sold quite a bit of her beautiful glass items. I was happy for her! I walked around with Joan on Saturday after she picked me up to go, and saw some really neat things, some really odd things, and some very pretty things! One thing I loved was this booth that was selling necklaces made of ribbons. You can wear them at any length. If you don't want to wear them long, you can pull the ends to make them short, like a choker, or anywhere in between. I bought a really pretty blue and purple one, and put it on shortly after we left the booth. I decided I loved it SO much, that maybe they'd make good Christmas gifts for a few people!! So on Sunday, I went back to the booth and shopped again! The lady was surprised to see me again, but she helped me by showing me different colors. She also asked me why I was wearing oxygen, and asked if I had asthma, so I got to teach her about PH. Kind of a win-win situation, if you ask me!

Here is the necklace I bought! :)

There was also a booth near the ribbon necklaces with a variety of hand-painted glass items that were really beautiful. Joan really liked some of the ring holders, and we eventually went back so she could pick one out for her birthday next week. I had wanted to buy a few gifts at that booth on Sunday when I went back, but the people had not come for Sunday. I was sad! I had a card for their website, but unfortunately, the site said the account was suspended. Darn!! There are also phone numbers, so maybe I'll try calling to find out if they even know about their website! I would like to buy something more from them, but that's kind of hard to do when you can't find it online!

Joan and I left the festival to meet our parents and aunt and uncle at a local restaurant for lunch. It was very yummy! I enjoyed a small salad, and a cup of their nacho soup. Mmmmmm. I could go for some again. lol After that, Joan dropped me off at home so I could take it easy until that evening when we were going to a party. I tried to take a nap, but it just didn't happen! So, Joan, Rick and I went to the party around 5-something I think it was. We had lots of food, several drinks, and a good time! I danced with a couple ladies on the back deck to Michael Jackson! We eventually decided to leave, and I sure did sleep good that night since I had a full day!

Sunday was busy, as well. I got ready to go back down to Main Street around noon, so I could see my friend and his buddy play acoustic guitar on the main stage. I did get to hear them, but I was so busy chatting with a few people, that I didn't technically watch them play. But they were good! I hung out with Mandy and Joan for about an hour after I had shopped again, and then I left to go downtown to meet a PH friend. His name is Bob, and he lives in Japan! However, he was over in Canada for the weekend for a family wedding, so while he was on this side of the world, we decided to see if we could meet up. I waited outside of the Starbucks across from the casino, and he showed up a minute after the time we had said we'd meet. Talk about prompt! It was SO nice to meet him, too! I treated him and his dad, who had come along, to beverages, and Bob and I went outside to chat while his dad stayed inside to work on some taxes. Bob and I talked about a variety of things, from our PH journeys, to our phriends in chat, to Niagara Falls and living here, and about Japan. He showed me a magazine-type book of the earthquake and tsunami that happened over there several months ago, and the pictures were just amazing. It's so hard to believe the devastation that happened! He did say many areas are rebuilding, but some just not fast enough. Anyway, after about an hour and a half, we said our goodbyes after a picture, and I headed home. It was just such a great weekend, and I felt truly blessed that I was actually feeling well to enjoy it all!

Where'd The Week Go?

2011-06-24T23:28:00.003-04:00

I can't believe it's Friday night already. I don't know what the heck happened to the week, but it sure went by fast. The one very good thing about this week was that I felt a lot better than I did last week. Except for a headache here and there in the beginning of the week, I got through the rest of the days feeling pretty good, although tired. For that, I am thankful!

Tuesday I had to bring my mom to the eye doctor. She has diabetes, and her eyes need to be checked to make sure everything is ok with her eyes physically. Since they had to put in drops to dilate her eyes, I drove. It sure isn't that easy to try driving after those drops! After her appt, we had lunch at Applebee's, and then went to Walmart. Seemed like we were out forever, and I guess we were. I left the house at 10:30ish to pick my mom up, and we got back home after 4. Tiring!! Dinner was very very casual for me, since I didn't have the energy to cook. I watched a Netflix movie after eating (which I didn't really care for), and got online for awhile before going to bed!

Wednesday my mom and I went to Dollar General for some wrapping paper and cards, and then to the City Market. I got some yummy peaches and plums, but there wasn't much else to really buy. I pretty much took it easy after going back home. For dinner, I tried a new recipe that my sister recommended: Quinoa and black bean chili. It was delicious, although quite a bit spicy! The recipe calls for chipotle adobo, which I've never had, and I had no idea that it was so hot! The recipe also had jalapeno peppers, but I skipped that altogether, and I'm glad I did. I can't imagine how much hotter my mouth would've gotten if that was in it, too!! lol It made a huge pot of chili, so most of it went into the freezer on Wednesday night. I just love leftovers!

I was happy to be at rehab on Thursday, since I hadn't gone since last Tuesday. It felt pretty good to exercise! When I got home, my friend, Dee, came over to have lunch out in the backyard with my new table and chairs. She brought some food over since she has food allergies, but she asked what was in the chili, and found that she could actually eat it! So, we both had chili, fresh salsa and chips, and carrots. It was so very nice out at that point, I almost didn't want to go in! After an hour, we did though, and Dee left for home. And an hour after that, it downpoured. Perfect timing!! Thursday evening we went to Mandy's to celebrate my niece and nephew's birthdays that were earlier in the week. My niece turned 6 on Tuesday, and my nephew turned 4 on Wednesday. I can't believe how fast they are growing up!! Wish they'd stop that!! lol

Today I had a low key day around the house, taking my good old time to clean something, and then go back online and putz around. By late afternoon, I took a nap with Mittens (always so comforting!!). I had a quick dinner, and then went to an art gallery opening with my friend, Dee, and her parents. Dee had a couple pieces in the gallery, which were very nice! One was a purple betta fish, which she painted, and the other was photography of bull dogs. We were there for an hour or so, enjoying (mostly) the other paintings and such. Afterward, we went to Dairy Queen for some sundaes. We sat in the car eating them and chatting for about half an hour. It was nice! After I got dropped off at home, I watched my Netflix movie, which was Little Fockers. It was alright. Not as funny as the first two, I thought, but not terrible either.

Tomorrow is a busy day, with an art festival to go to, and a party in the evening, so I must get to bed!! Sure hope this weekend doesn't just whiz by!! lol

Not Your Typical Night Time Story

2011-06-19T12:33:00.000-04:00

******WARNING****** IF YOU DO NOT LIKE HEARING THE "F" WORD, OR HAVE LITTLE ONES AROUND, PLEASE DO NOT LISTEN TO THIS VIDEO!! I AM POSTING IT BECAUSE I THINK IT'S HYSTERICAL, BUT I REALIZE THAT SOME MAY NOT FEEL THE SAME WAY, WHICH IS THE REASON WHY I'M POSTING THIS WARNING FIRST!! LOL *****WARNING*****

Paying People To Stay Home

2011-06-19T00:10:00.000-04:00

Paying People To Stay Home

This article doesn't describe my exact health situation, but it could really fit anyone trying to deal with a chronic illness. Everything written in it pretty much describes how I feel about not being able to work. Never, ever would I have thought of "retiring" at the age of 24, barely after starting my teaching career. If it wasn't for my doctor telling me to quit my job as a preschool teacher, I truly believe I would be dead today. I have spent years feeling guilty about not being able to work. Even though "I look good" on the outside doesn't mean that I feel fantabulous on the inside. I've often wondered if I could handle going back to work full time, or even part time, and I know the answer to that is no. I may be able to do ok at first, but on a regular basis, I just don't think my health would stand up to the daily grind, and I'd be back where I started 11 years ago when I stopped working. So I really do appreciate this article, and I hope others are able to understand that many people on disability feel this way, especially when it doesn't look like we are sick!

Game Over

2011-06-18T23:02:00.002-04:00

Yesterday I still felt pretty crappy. I was trying to figure out how to rest up, make it to Aldi's quick to buy some flowers for my nieces (one biological, one through my best friend) for the dance recital, and then actually make it to said dance recital. Luckily my mom called me to ask if I needed to still go to Aldi's since she was going out to the bank, and I said yes. She picked me up and we spent maybe half an hour in the store. I got home and tried to eat something before going to lay down for awhile. My parents got me later to go to the dance recital, which was very good. Both kids did great jobs with their dance numbers! We only stayed for the first half of the recital, and took off during intermission. I'm glad, too. I still felt pretty nauseous, and I kept getting chills and then hot spells during the show. When I got home, I took my temperature, but I didn't have a fever. By the time I went to bed, I felt as if someone had both hands around my neck and was squeezing. Sure didn't feel right to me.

I got up this morning feeling almost the same way I went to bed. No one was squeezing my neck, but I still had a bad headache. I kinda felt queasy, but hungry at the same time. I ate a little, then spent some time talking on the phone, then tried to get a little fresh air. I eventually tried to have a little lunch. Well, I'm not sure how much time it was later, but lunch decided not to stick around. I got sick. That hasn't happened in I don't know how long. My head hurt even worse afterward. Two Excedrin Migraines hadn't helped the headache, and the ice packs weren't alleviating the situation at the time either. I finally thought that maybe I've had a migraine for the past couple of days, but not one I've experienced before. Usually I have pretty concrete signs of getting one, but nope. I didn't know what to do about the stag and doe. I felt terrible about having to miss it, but I wasn't sure if I could even make it since I wasn't exactly in great shape. So I just called Mandy to let her know I didn't think I was going. Hopefully Joan would understand. I spent much of the afternoon laying in bed, sleeping on and off (while Mittens snored next to me). I had some broth in the evening, and spent a few hours just watching stuff on tv. I finally took another Excedrin around 9ish since I still had a bad headache. It's sort of calmer now. I just hope I can actually sleep tonight since I had the pill so late, considering it has some caffeine in it. What I'm hoping for more is that I feel better tomorrow. I'm thankful this isn't anything PH-related, but it sure doesn't help to feel so beat down like this. So I almost made it through this busy week. I tried my best, even though I mostly felt crappy. I just really hope I didn't let Joan down. :(

Zoom

2011-06-17T00:24:00.002-04:00

This busy week keeps trudging along. My nephew had his preschool graduation on Wednesday morning, in which he totally refused to participate. lol He just sat there on the chair and didn't sing, didn't stand, didn't say the poems. At least he wasn't the only kid not to join in. The boy next to him sat straight in his chair the entire time, and a little girl cried. Better luck next year, I guess!

My niece's Kindergarten graduation went a lot better. There was a picnic lunch first, which was nice, but hot. And then we all went into the auditorium and listened to the kids sing three songs, and then each of them got special awards from their teachers. My niece had Best Artist award! She really is quite talented! After everything was over, I brought my mom back to the vet so she could pick up some meds for Shelby. Poor Shelby has an infection of some sort. She's been getting laser treatments, too, to see if the pain she has in her back legs will get better. She's about 14 years old, which is pretty old for a dog. I don't know, though, personally I feel my parents are going to need to make that painful decision soon of letting her go. Guess we'll see what happens.

I haven't felt all too great this week, despite everything I've been trying to do. I got home today with no energy and a lot of pain in my face and my one leg. I napped for awhile, but nothing felt all that better. I feel completely worn out. I'll be up for an hour in the morning and feel as if I need to go back to bed. It's so frustrating. Tomorrow evening is my niece's dance recital, and then Saturday night is the stag and doe. I just hope that I can get through them both. On that note, I need to get myself into bed!

Exhausting Day And A Shout Out

2011-06-13T23:48:00.003-04:00

Yesterday I didn't do too much. A lady I know came over to see how to alter my dress for my sister's wedding in September. Mandy came over with the kids so that Mrs. C. could also fix my niece's dance costume. After Mrs. C. left, Mandy, the kids and I hung out on my front porch for maybe an hour. The kids played with sidewalk chalk for quite some time before their focus shifted to matchbox cars. Eventually they left, and I got my dishes done, some stuff ordered on Amazon, and dinner made. I was pretty tired when I went to bed, but didn't think I'd be even more exhausted when I got up this morning. I wanted to go back to bed while showering. Not good! Somehow I managed to get 3 loads of laundry done, but when my stuff was in the dryer, I finally tried taking a nap for awhile. I had broken sleep because stuff kept waking me up: a phone call, the doorbell, and then my alarm to take my 3pm medicine. Eventually I tried just laying on the bed again, Mittens joined me, and I sorta got some rest. I did feel a bit better in the evening. I'm just hoping my entire week isn't like this. I think it's the busiest week I'll have in the next couple months. My nephew graduates from preschool on Wednesday morning. My niece graduates from Kindergarten on Thursday. Friday is her dance recital, and then Saturday is the stag and doe for my sister and future brother-in-law. I'm finding it overwhelming! And especially if this tiredness crap doesn't go away. Ugh. Crossing my fingers that everything works out!!

I'm going to give a shout out to a fellow blogger I somehow "met" many months ago. I'm jealous because she lives in the Cayman Islands, and she gets to wear sandals way more than I can in a year!! lol She has been participating in a 100-day Photo Challenge, and her final day is on Wednesday! I'm quite impressed that she has kept up with it. I have read her blog every day and wonder if I can do the challenge myself. I'm not too sure, but maybe I'll try it sometime?? Anyway, besides celebrating the end of the Photo Challenge, she will also be celebrating her 2 year blog birthday on Wednesday! In honor of these special accomplishments, she is having a "Picture Perfect Giveaway!" She's making the entry for this contest quite easy, including mentioning her giveaway in a blog post (which I am doing now! hehe). If you are interested in taking a look at her blog, please visit Such Life In the Tropics (which can also be found by scrolling down and finding the button with the starfish underneath my list of blog friends to the left side of the screen!). Happy Reading!!

Celebration

2011-06-11T23:46:00.001-04:00

Today I spent time with my 2 best friend's as we celebrated Eve's wedding from last September with about 100 people. The predicted weather for today was full of thunderstorms and clouds, but the actual weather turned out to be mostly cloudy with some brief appearances of the sun. It was pretty comfortable! The restaurant was right on Lake Erie, and it was so relaxing. Everyone seemed to enjoy the easy atmosphere! I'm happy for Eve. Her husband seems to be a lot better than the first one, and he even likes us! lol I've seen how much he's been supportive to her in many situations, and especially most recently with her brother's passing. So I truly wish them much happiness and love for the rest of their lives! It really was a great afternoon!

Process of Elimination

2011-06-11T23:28:00.000-04:00

I'm sure at some point I've blogged about this topic, but being that I can't remember much lately, I'm going to bring it up again. Just for my own sake. Ever since the end of September last year, my mouth has been driving me nuts. Something didn't feel right for awhile, and trying to describe it was even worse. I had no words for it really. So, I didn't bring it up to any of my doctors right away. Dumb? Yes. But, I just didn't have a way to let me doctors know exactly what I was dealing with since I didn't know what to say about it. Anyway, I actually thought it was a side effect from taking cephalexin, which is a type of antibiotic. I was on it for acne. I thought it had caused some staining some of my teeth, and so I eventually tried stopping it in December, right before Christmas. But after being off it if for a bit over 2 months, my mouth still felt the same. In February, I decided to go back on the cephalexin, but just one pill a day instead of two.

Meanwhile, my mouth was terrible in the winter, and in January, I went to the dentist to make sure it wasn't dental issues. He took an xray, and said my mouth and gums couldn't be in better shape. He told me to talk to my doctor about it, which I did a couple weeks later. She had no ideas, and by then, it had started to get a little better, so I thought that maybe I was on the mend. But winter turned into spring, and although things were much better, my mouth was still not the same. By the time I went to my dentist again for a regular cleaning (didn't know it would be my last one forever with them, sniff), I actually had a way to describe the feeling! I told my hygienist that my face feels tingly when I touch it, or if something blows on it, like the hair dryer, or even the wind. I thought that perhaps this was something neurological. The dentist thought that might be it, too. So, several weeks after that visit, I saw my primary doctor again, and this time I had a way to explain to her what I was feeling. She asked me a bunch of questions, and said that she would write me a script for bloodwork to check my Vitamin B12, magnesium, and folate levels the next time I had to get my monthly bloodwork done. I hoped for some sort of news with the bloodwork results, but I just wasn't sure that was it since I take multivitamins and I eat pretty good.

I went for the bloodwork on Monday. In the meantime, I had started experiencing a burning feeling to my tongue for at least the last 2 weeks. It's as if I scalded it on a hot drink, but I never did. I didn't know what to make of this symptom, so I googled "burning tongue." The results I got were showing something about post-menopausal women and lack of estrogen, and how some women feel as if they had a burning tongue because they had lower estrogen in their system. It dawned on me that, although I am not near menopause, I have been taking non-estrogen birth control pills in the past year after being on regular birth control pills for over 10 years. Hmmmmmm. This was interesting! I waited anxiously the next several days for my bloodwork results before my nurse finally called me on Thursday to say that everything came out fine and dandy. So, I told her my theory about the birth control. She said she'd have to ask my doctor, and she'd get back to me. So while waiting, I was chatting with a good phriend about everything, and she looked up burning tongue and progestin (progesterone), which is the type of birth control pill I now take. She sent me a link to a site that had at least 10 women commenting on a burning tongue sensation while taking or using some type of progestin. OHHHH! Sooo, maybe that really IS my issue! I called my nurse back to tell her that I was going to call my gyno about the problem. She told me to let her know what happens. So, at my phriend's pushing, I called my gyno's office and talked to a nurse there. She discussed this with the nurse practitioner, and called me back. She said that while they've never heard of progestin pills being a problem, I could try going off the pill for a month to see if anything gets better. I told her ok, and that I really think that being on an estrogen pill for 10 years, and then being just on progestin caused the mouth problems, and once again, she emphasized that they've never heard of this. I said to her, "Really? Why don't you try using the internet?" lol ANYWAY, yesterday was the first day I stopped taking the pill. I'm a little nervous about it, and at the same time, so hopeful that this is the cause for all the problems in the past 9 months. Although, if it IS the problem, I don't know what's going to happen about being on a birth control pill. But, that has yet to be determined!! Gotta fix one problem at a time!! lol

Mittens Playing Around!

2011-06-05T00:27:00.000-04:00

And So It Begins

2011-06-05T00:21:00.002-04:00

June began on Wednesday, which means that hopefully the summer weather will stick around for awhile since it's the season I like most. June also begins an incredibly busy summer, especially on the weekends. I had thought about going to meet an author in town today, but then decided to just stay home and take it easy. Besides that, I was just really tired. Starting next weekend, however, the fun begins. I will be busy every single weekend from June 11th until July 31st. I feel overwhelmed. I'm glad to have things planned, but also, I just want to take it easy! Of course, I'll have the weeks in between, but it doesn't feel the same. This month I have a couple parties, a dance recital, and a stag and doe (which is like a bachelor/bachelorette party in Canada) for my sister and her fiance. Next month is shower month. Three bridal showers for Joan, three weekends in a row, and a baby shower the last weekend of the month. Like I said, an incredibly busy time!! I just fear this summer is going to fly by, and then we head into the colder months again. Not what I look forward to at all!!

Toothache

2011-05-31T01:17:00.002-04:00

Saturday I opened a letter in the mail from my dentist. I thought maybe I had a bill of some sort from the unexpected visit I made in January to figure out what was going on with my mouth. Instead, it was a letter stating that I was no longer allowed to go there because of the rise in Medicaid costs. My dentist will not be taking Medicaid patients anymore. THIS SUCKS. I stayed away from the dentist for several years a long time ago because I had such issues with going. I was told about this dentist and his office probably at least 8 years ago, maybe even a little longer. Even then, it took a very long time to trust anyone with doing my teeth. In fact, it wasn't really the dentist himself I had to get used to, it was the hygeniest. I had a couple of them who were incredibly rough on me and made my gums bleed terribly. Now, I admit that when I started going there, I wasn't that great with flossing. And it took me years to even get myself into the habit. But really, my gums were that horrible that when the hygeniest made me rinse, I was spitting out mostly blood?? Come on! Finally, on one of my appts, I got Luann. Although I was very nervous because I didn't know what she'd be like, she put me at ease and did a great job. Yes, I did bleed some, but definitely not as much as previous visits. Over the last several years, Luann has been the ONLY hygeniest I'd let touch my mouth. In fact, it's written in my chart that I can only see her. I've come to trust her very much, and she just does her job so carefully and so well. And she LOVES her job. But now??? I can no longer go there, and that means I have to find a place that will take me and my stupid Medicaid, AND I have to relearn to trust someone else. This is just incredibly upsetting to me!! I know it may not seem like a big deal, but really, I truly hate that I must start over. If I could skip going to the dentist, I would!!

After reading the letter and realizing what I'd have to go through all over again, it also just made me a bit mad and upset at the reason WHY I had to deal with this in the first place. I wouldn't have to need Medicaid and Medicare if I didn't have PH. I totally wish that I could work, and be able to teach in a classroom without worrying about my health. I wish I didn't have to rely on the government for help. Believe me, I'm not a person who is very happy to be getting food stamps. I'd rather be earning my own money, enough money, to buy my own food without relying on anyone else. All these emotions came up over the fact that I just can't be a NORMAL person and earn a living because my health gets in the way. I hardly ever do that, let myself get down because of this stupid disease. But, I know there isn't anything I can do to change the situation. I just need to start calling around to dental offices in this area and figure out who will take Medicaid and who won't. I am really hoping this isn't starting a trend. If I end up losing any of my doctors because they have decided Medicaid is too much to deal with, I'm really going to lose it then!!

An Inspiring Story

2011-05-26T00:34:00.002-04:00

Last night, I watched a Netflix movie on my laptop. It was a documentary about a woman who adopted 11 special needs children, and a year of their life. The name of it was "My Flesh and Blood." Now when I read the description of what the movie was about, I had no idea the challenges these children faced. I at least thought perhaps there would be a child with Downs, which there was one. But other children included a girl who was severely burned in her crib as a baby; two children diagnosed with epidermolysis bullosa, or EP, an autoimmune type of disease where the skin doesn't have collagen that makes it stay on the body (the best way I can try to describe it), one of who had passed before the filming of the documentary; a child with cystic fibrosis, or CF, who also had severe behavioral issues; 2 Russian girls who were born without legs; and several others. The mother, though, had to be the most loving person I've seen to want to adopt these children by herself. She had had two children of her own with her husband, but shortly after they adopted an Asian child, her husband had left her. At some point, the agency where they adopted the Asian girl called Susan and asked if she'd be interested in adopting another child with special needs. She did, and kept adding children until she got up to 11. I was just in awe of Susan, and the ginormous heart she had for these kids. The documentary was very touching, and also sad, as you saw how the children tried to deal with living challenged lives. I really would recommend this film to anyone. It's just so incredibly touching, and I know for sure that Susan most definitely has been blessed with a very loving spirit!!

A Good Day!

2011-05-26T00:12:00.003-04:00

The past couple days I have felt really yucky, and mostly crampy, which makes it very hard to be able to accomplish anything. Tylenol and heating pads helped a little, but I pretty much didn't do anything for those days (except for a doctor's appt on Monday). So today, I was rather relieved when I woke up and felt much better! I had wanted to go to Walmart, but the sun was shining, and it was so nice out, that I decided to stay home and get a couple things done here instead. After doing the dishes, I ventured out into the backyard to do a little gardening. WHAT??? Gardening??? ME??? Ok, it's no secret how much I really do not like anything dealing with dirt, but the past few years, I don't know. Something changed! I don't LOVE gardening, but I don't hate it either. I've been planting flowers or trying to grow tomatoes. I've been somewhat successful at it! The thing is, the ground here stinks, and I can't dig it up anyway. So I've been trying to grow things in large pots. It's really the only option I've got!

Anyway, I've been growing roma tomato plants from seeds since last month, and they still aren't quite big enough to plant yet without probably failing. So what I did today was plant some green onion seeds in one of the planters out back. The dirt was already in there from last year, so I mixed up the soil a bit and put some of the seeds in there. Hopefully something grows!! I'm always worried that nothing will come out of anything I plant. lol

The container that holds the green onion seeds is up against the back of the house, and it's quite obvious that my dad has mowed the grass around it. All up against the house was a bunch of tall grass and weeds. As much as I didn't want to, I started to try pulling it all out. See, this is just mind over matter stuff. I had to tell myself to suck it up and just do it!! lol I was squatting for most of the pulling, and my poor legs were getting tired. I decided to try using old scissors, and that was going ok, but my legs still felt worn out. So I went into the garage for one of my new chairs, and tried pulling and cutting stuff out while sitting. That was also getting my legs tired, and also making it hard to breathe since I was bending over. But, I just kept at it, and just worked a little then rested a little. I eventually got it all done, though, and I was proud of myself!! I had accomplished something I usually hate doing, and it looked so much better, too. It no longer looked like a jungle growing against the house. lol

I eventually took my book out and some water and sat at my table for awhile soaking up the sun. The next few days will rain (boooo), but then we'll be getting warmer weather back! I finally took down the plastic a couple weeks ago around the windows, so I'll be opening them up when I can. I suppose my next job is to switch wardrobes for the summer, since I have yet to do that. I've been taking stuff out to wear here and there, but not everything. I really hate that chore!! Not only that, I could use new clothes!! lol

Movies!

2011-05-24T00:48:00.002-04:00

My Netflix account is no longer on hold, since all the shows I love to watch during the regular tv season have all had their finales. So today I got my first movie, Blue Valentine. It had such rave reviews before the Oscars, and was even nominated for a few, but although I liked it, I didn't see what the big deal was. I guess I'm just not movie critic material, I can't see what the reviewers loved so immensely about the film. lol The next movie in my queue is Valentine's Day. I hope that is good! I watched about 25 films, give or take, last summer through Netflix. I'm hoping I can watch that many again this summer before I put my account back on hold for the fall tv season!

Saturday, a few of my friends and I went to see Bridesmaids. I heard so many funny things about the movie, and I did think it was pretty hysterical! The entire theater was in stitches for most of the film. So, I thought it was worth going to see! I know my friends are going to want to see The Hangover 2, but I waited for Pay-Per-View to see that movie, and I'll wait to see the second version that way, too. I didn't love it as much as they did, so I don't want to really waste my money seeing it in the theater. Maybe, if they wanted to wait, I'd see it when it goes to the cheap theater. But, we'll see!

I have two movies I'm looking forward to this summer. The Help is based on a book I read last year (or maybe the year before), and it was a wonderful book! I saw the movie preview on Saturday, and read an article about it today, and already there is Oscar talk for a couple of actresses. The other movie I can't wait for is the final Harry Potter. I'm excited and nervous at the same time. If they aren't totally true to how the book ends, I will be extremely disappointed. Somehow I don't think they will steer clear from the book's ending, but I'll just have to wait and see it to find out how it all comes together!!

Water, Water, Everywhere

2011-05-16T23:48:00.002-04:00

This morning I woke up a little late, and as I was trying to get Mittens his breakfast, I heard my upstairs neighbor call me from the basement. So I went to the door, and she told me the basement was flooded. CRAP. I went down my 4 steps to the top of the basement stairs, and she said the water was everywhere. UGH. I went back into my apartment to call my mom and then get dressed, and I headed down there to see how bad it was. Well, it really was a lot worse than the last time it had flooded, which was about 3-4 years ago. The rains we've had in the last few days was part of the problem, but the tree roots in the sewer lines was the biggest reason it backed up. And unfortunately, it'll happen again in another several years. The water was almost 2 inches deep in some areas, and there were a few spots where the water didn't reach (thankfully, my Christmas tree was one of those areas!). I'm glad that all of my Christmas decorations were on a big table in boxes, so none of that got wet or ruined. The only kind of big loss (maybe) are my high school and college yearbooks. They were definitely wet. I've had them standing up on the floor in the computer room all day with a fan going on them. I checked earlier. They are half drying out, and half still wet. I'm not too sure what to do about it yet, but I'll check them again tomorrow.

My upstairs neighbor was not that lucky. She has the big room down there that my mom let her use for storage when she moved in a couple years ago. Well, all her stuff is all over down there, and much of it is wet. She removed about 3 bags of stuff, but I don't know if it even made a dent in the room. I've asked her a couple times if she wanted some help getting rid of stuff, but a part of me thinks that this is going to be an ongoing battle for her to hurry up and throw things away. I just don't want it to start growing mildew or mold or anything. That would smell terrible, and it would be awful for my lungs. I sure hope my mom says something to her about getting it cleaned up asap. Or else it just might not happen.

Both of my parents used the shop vacuum to suck up much of the water after the plumber came and unclogged everything. What I did end up losing was a bunch of empty cardboard boxes that I would save after buying things, like my TV box, a computer box, toaster box, vacuum box, etc, etc. Ummmm, did I REALLY need to be saving all of them?? Nooooooo. So now, my area is actually pretty clean! lol I do have some more things to go through, but at least the majority is all done. Tomorrow is another day to see what else I might be able to throw out!

I do have to say that after dealing with this problem, I realize that in no way does it compare to what is happening down south in in Mississippi and other areas effected by the flooding down there. The amount of water I had in the basement is just nothing compared to what they have. Entire houses are gone. It's incredibly sad. So I count my lucky stars that I did not have to go through what they are trying to cope with, and I pray for them that they are able to rebuild when all the water has receded.

Update On My Health

2011-05-15T17:32:00.003-04:00

This time last Sunday, my parents and I were almost in the Cleveland, OH area for my scheduled appointments the next day. I have been meaning to write about it since we got home last Monday, but every time I finally think about it, I've turned off the laptop for the day! So, here we go!

My echo appt was first, and since I was the only one waiting to have it done in that particular area of the hospital, I was called almost right away. The tech did a good job, and I was done in about half an hour. I had so much time left before my next appt, that I went up to the 7th floor to visit a phriend who'd been in the hospital for almost a month. Merle had had heart surgery, and the recovery process was taking a lot longer than she had thought. I brought her a card, and 4 sheets of paper with messages from phriends on Facebook! She wasn't able to read it right then, but later she texted to say how much it meant to her. I was happy to at least give her a little smile.

The next appt was in the cardiology department. I had to see the fellow, and then my adult congenital cardiologist. I really really like him, but unfortunately, the wait time to see him can sometimes be ridiculously long. This time around, it was 2 1/2 hours before he saw us! My parents were really not all that happy about it, but Dr. K explained that the patient before me had to be admitted into the hospital because he wasn't doing well. I guess that takes a lot of time. Anyway, he ended up spending about 40 minutes with us, answering questions and explaining things. He even asked me if he'd shown us my echo before, and when I said no, he pulled it up on the computer. My mom has never ever seen any of my echoes before, and I've been getting them done for 35 years!! So, I'm glad he spent that time with us in going over things!

Just a brief description before I go on with some of the things I heard: I have congenital heart disease (what I have is called atrioventricular canal, or AV Canal, and it's basically 2 holes in my heart), plus pulmonary hypertension. This combination is known as Eisenmenger syndrome. Many people living with Eisenmenger's normally have low oxygen levels. Our bodies adjust for this, and compensates for the low o2. And even though I am on o2, my saturation numbers don't really get any better.

Anyway, the reason I brought up the previous paragraph was because Dr. K made a comment during the appt that there is nothing that shows Eisenmenger patients benefit from using oxygen. I kinda just stared at him when he said that. But he explained to me that no matter how much o2 an Eisenmenger person is on, whether 2L, 4L, 15L, on oxygen tent, that it doesn't do anything to make the o2 sats get into the normal range. It has to do with the shunting in the heart and the way the oxygen is carried. And as a phriend of my explained it later, it's like trying to blow up a balloon with a pinhole at the end of it. The oxygen just doesn't stay in our bodies like it should. If that is the case, why was I ever put on it 10 years ago? Well, I'm not sure if anyone fully understood what I had when I started going to Cleveland Clinic, and my o2 sats are really very low, so the doctor I saw back then just thought I could seriously use the extra o2! Anyway, Dr. K wasn't telling me to just call up my o2 company and tell them to come get everything, and I wouldn't use o2 ever again. Honestly, as much a I would LOVE to see that happen, I can't imagine going without it. I definitely will keep wearing it while exercising, so my heart won't strain and enlarge. But if I just want to take a break from it while hanging out at home, I will. And I have been. Actually, I used to do it often, but now it's nice to know that I'm not really defying doctor's orders by taking it off for a bit. lol

Another thing Dr. K mentioned was that Eisenmenger patients often do not need a transplant. This doesn't mean they can't have one if it comes down to that. I have a friend who was an Eisenmenger person, and I met her after she'd had a transplant. I do hope that I will never need to go down the transplant road, but if I have to, I will. It's just nice knowing that I may never need to because of my specific condition. And thankfully, I can increase Revatio if I need to, and also try one of two inhaler meds if my situation starts to decline. Luckily, none of that is a concern right now!

After our appt with Dr. K, we were already late for my appts with the pulmonology department, so we ate some lunch before heading over to that building. Shortly after checking in, I was called by the tech to do my 6 minute walk, and to have a flight simulation test to see if I can tolerate being in a plane. I ran into my PH doctor in the hallway, and he asked me where I was going on vacation. What vacation?? He said since I wanted the flight test, that I must be going somewhere. lol I can't really afford going anywhere right now, but at least it would be good to know if I can ever take a flight somewhere!

My 6 minute walk was a bit lower than the one I did last year, but I finished the walk this time around, instead of being stopped 30 seconds before the end like last year because my o2 dipped below 60. I was put on 15L of o2 again, like last year. I purposely paced myself this time, and I think it's the reason for the drop in feet (or meters, depending on what results you see). The good thing was my legs weren't killing me or felt like lead while I was walking. I did feel as if I was more short of breath than usual, even though I did use pursed lip breathing. But considering I don't really pay attention to the results of the test anyway, and neither does my PH doc, it didn't matter to me. lol I told him before, those 6 minutes do NOT indicate how I feel the entire year it's been since I've seen him last!

The flight simulation test was next, and after the tech and Dr. G finally figured out how to do it based on my condition, she set me up on a cushy blue chair in the room, and put me on 5L of oxygen. Then she put a mask over on my face that had oxygen that was as if I was 1500ft in the air. I had to sit there for about 20 minutes to see if I dipped drastically below the 80 oxygen sats I started out with. I moved around a lot on the chair, and talked much of the time to the tech since I know I wouldn't sit like a stone in an airplane, and the lowest my o2 went was 79. So when I arrived at my destination 20 minutes later, Dr. G said that I could fly as long as I was on 5L of o2! Yay!

Dr G came into the room and sat down with me, and we chatted about what Dr K said regarding the oxygen use in Eisenmenger patients, how I've been feeling, med changes, and flying. It didn't feel like your normal appt! lol He did agree with Dr K about the oxygen, but said it's up to me if I want to see how I feel not using it. I asked him if I could add him on Facebook, since I heard him in the hallway say he had a page, and he said sure! And that was about it! I don't see him until next May again, unless something drastic changes throughout the year. So I went back out to the waiting room, and told my parents I was all finished. Dr G did see us getting ready to leave, so he came over to say hi to my parents. Then the only thing I had left to do was get my bloodwork done, and we were off back to Niagara Falls!

Since being home, I have been taking the oxygen off for a few hours at a time, but quite honestly, I can't seem to wrap my head around trying to go longer without it. I think it's more of a mental problem than an actual need! I'm still leaving the house wearing it. I haven't tried just putting the o2 in my car and seeing what happens if I'm in a store for a bit without it. So, I don't know. The news that I can try not using it if I want was exciting at first, but I think it would be a mental battle of epic proportions to actually wean myself down. lol I am just happy that my health is stable right now, and I pray every day it continues!!

Debriefing

2011-05-08T00:23:00.003-04:00

I need to get to bed, but I thought I'd update briefly on what's been going on around here!

Thursday: Went to rehab, met another cute guy working there. He is a body builder. He showed me pics. Oh dear, help me.

After rehab, I went to Rite Aid to pick up some meds. Walking out of the store and back to my car (which was just several steps away), I watched an old woman hit the back of my car as she was trying to park in the spot next to mine. If I had not seen it, if she didn't see me standing right there watching, I would bet you anything she would've just went into the store and not said anything. As it was, I had to tell her there was damage, and that I wanted her insurance info. She never even apologized. My car has almost $380 (estimated by my insurance guy) in damage, just a bumper replacement since it was paint that was scratched off. I'm making her insurance pay for it. Only because she didn't even give a crap that she hit the car. Makes me wonder if she's hit anyone else's car before!

Friday: I cleaned and got stuff that needed to be done around the house while dealing with a tummy ache. Not fun, but by evening, I was ok.

Saturday: I had a PH support group meeting today. I had considered cancelling it because I knew it was going to be a very small group, but one of the people coming had never been to a group meeting before and he had told me he had questions. It was a wonderful meeting! There was a total of 8 of us, 4 of us PHers, and we actually went over the scheduled meeting time. The guy who came thanked me at least 10 times for having the meetings, and promised he'd be back for the next one. That made me realize that the questions I had several weeks ago about about whether or not I was doing what I am supposed to in life were just stupid. Every time I hear someone thank me for the help I provide in the PH community, whether online or in person, I know that God has steered me in the right direction!

Sunday: Well, Sunday is only a half an hour old right now, but in many hours, my parents and I will be on the road to Cleveland for my annual checkups. I love saying annual. It's nice not to need to go there more than once a year! I am hoping to visit a dear phriend who had surgery there several weeks ago while I'm there. I had a good idea this morning to kinda do a "virtual card" for her. I posted on Facebook for phriends to comment on my status if they'd like to send M. a greeting. I'm going to print out all of the comments (which total almost 50 right now!) for M. to read, and put them in a Get Well card I bought. I hope that it perks her up a bit! And on that note, I better get to bed!

Lazy Or Blah?

2011-05-04T00:56:00.001-04:00

In the last few days, I haven't wanted to do much of anything. I figured Sunday was a given since I'd had a long and emotional weekend, so I let myself do nothing. But Monday and today felt just as uninspiring. The only good thing I did was finally get the dishes washed on Monday while on the phone with Mandy. I blame the weather mostly for the lack of energy. It's been colder than normal, and I think the sun went on strike. The rain has made things so damp that I've reluctantly put the heat back on. Tomorrow is another day of wetness, but I've been mentally preparing myself to tackle the laundry list of things I need to do (including the laundry!). I'm crossing my fingers that I can do it!

Victory At Last

2011-05-02T00:52:00.002-04:00

As I sat and watched Brothers & Sisters tonight, I got highly irritated that breaking news interrupted the last 10 minutes of the show. Until I found out why. Osama Bin Laden had been killed, and his body recovered from the special operation unit that carried out the attack. Oh. My.God. I gasped at the news, and then I spent the next almost hour awaiting the President's address to the nation. The operation that finally led to Bin Laden's demise started eight months ago in August 2010, and today, after months of observations and plannings, President Obama gave permission to attack the complex Bin Laden was hiding in. The brief operation led to his death, and none of our soldiers were harmed. I am just in awe of the brave soldiers who led this mission, and the successful outcome that occurred.

While this is wonderful news for our country and the world, and especially to the families and friends who lost loved ones on 9/11, this by no means will end terrorism. This will not put a sudden hault on the wars in Iraq and Afghanistan. It doesn't mean we wrap things up and bring all the troops home this instant. Bin Laden's death was a huge triumph in the war against terror, but it certainly doesn't mean that we are now free from any future attacks. Our men and women in uniform are still needed to keep our country protected from those who are hellbent on doing us harm. Right now, though, I'd like to give a big shout out to those who are in the Armed Forces and doing everything in their power to keep our country safe. Thank you for your service!!

Saying Goodbye

2011-05-01T01:12:00.001-04:00

This weekend was mostly spent helping my friend say goodbye to her brother. The wake was 4 hours on Friday evening, and the funeral was Saturday morning. My other best friend and I went together to both. It was hard mostly seeing Eve's father looking so lost. He is 75, and told me that should be him gone, and not his son. The funeral was nice, and Eve's eulogy to her her brother was just beautiful. There was a nice luncheon in the reception hall afterward, too. I was glad to be there for her and her family, and I'll continue to pray for comfort and strength for them all in the days and months ahead.

Food, Glorious Food

2011-05-01T01:03:00.001-04:00

Does it look to you like Mittens is starving to death? No? Yeah, well, he sure acts like I never feed him! He's been on my nerves lately with how much he wolfs down all his food for the day and then wants even more. I've been good refusing his requests until I go to bed, and then I give him maybe a small handful more. I keep having to tell myself that he certainly won't starve to death overnight! And of course, he greets me with meows the next morning that I know have more to do with feeding him breakfast than saying hello. lol

Blown Away

2011-04-28T14:22:00.003-04:00

The weather around the country has been unreal in the last couple of weeks. There have been so many tornadoes, so much damage, and too many lives lost in many areas in the south. Many areas have been hit by severe storms that they are not usually accustomed to getting. It's been crazy! While the area I live in does not usually have tornado warnings, we had an advisory yesterday, but nothing happened. Somehow I feel like that advisory should've been in place for today. The winds have been terrible. This morning there were wind gusts up to 80mph. That is insane!! All morning the winds have sounded pretty scary, and they've been doing a lot of damage to huge trees and homes in the area. This afternoon, the Mayor announced no unnecessary travel in the city. I skipped rehab on purpose, because I would've had to drive near the gorge to get there, and you wanna talk about winds?? That area is 10x worse when the winds are high!! My poor little Saturn would've been blown all over the place! So I didn't want to fight the winds! I had a doctor's appt this afternoon, but after the travel advisory went into place, I called to reschedule. I didn't want to be blown away, either!! Besides, there is so much debrish flying around here. On my street, no one can pass because of downed power lines and lots of tree branches and limbs strewn about. While I realize that the damages here are nothing like the areas hit by tornadoes, I do find it amazing (and scary) at how much destruction powerful winds can bring when Mother Nature is at her worst!

Easter

2011-04-24T22:21:00.002-04:00

I got up a lot earlier than usual, even before my 7am alarm to take Revatio went off. I'm glad for the extra 15 minutes, because by 7:20, my mom was calling me to see if I was ready to go to church. They picked me up 10 minutes later, and we met my sister and her family for mass. I'm so not used to being up at 8am, but the mass was nice. I lit a candle for my friend and her family. I've been praying so hard, begging God at times, to let N. turn around and heal. It doesn't hurt to ask for a miracle, does it?

After church, we went to the casino for the breakfast buffet. I had two plates of food, the first one mostly breakfast foods, and the second one some lunch items. Then, I had an ice cream sundae. Honestly, I don't know how I packed the whole thing in, but I did. I was in a food coma by the time I got home, and took a rather long nap! When I got up, I got settled in the living room to watch the Sabres game, and play online, which I totally missed doing since I had banned myself from internet usage during the day. That's pretty much where I've been all night!

I got a call from my friend in the afternoon, and she told me they removed the tubes from her brother. Tonight I got a message from her saying that N. had died. My heart breaks for the entire family. She said she had a feeling this was coming, but she had hope that maybe he could turn around. Her parents, on the other hand....well, all I know is that they are a mess, and it's understandable. A parent should never lose a child. I'm sure the wake and funeral arrangements will be made, and probably be later this week. I intend on being there for them. I wish that there was more I could do. I know N. is at peace now. I just wish it didn't have to be this way.

Crazy Shoppers

2011-04-22T23:57:00.003-04:00

I went out with my parents today to a couple stores, mainly Walmart (the only one I had to buy stuff from!). I kept thinking it was Saturday since we went around 2pm, and my dad was with us. But he had gotten out of work early for the holiday weekend! It was a madhouse at Walmart, and even the roads were jammed with people out and about to get last minute things for Easter. It was nice being out with my parents, since it has been awhile since we last shopped together. I got various things I needed to get at the store, including a new pair of earbuds since the ones I had finally stopped working a few days ago. I hate it when I can't listen to my music! I have a few new products to try eating, such as Jello dark chocolate mousse cups, and almond butter. I try to be healthy, and yet at the same time, I buy a cheese topping for popcorn that contains a ton of salt. lol Sometimes I don't understand myself!! Anyway, we didn't get home until almost 6pm since my parents wanted to stop at another grocery store (I stayed in the car), and then ended up at yet ANOTHER grocery store briefly to get a few more items (again, I stayed in the car lol). It was a nice afternoon with them, although a tad bit on the chilly side (even inside Walmart!). When is this weather going to get better???? And I don't mean better as in a few days out of the week, I mean CONSTANTLY better?? lol Anyway, I hope for a nice weekend, despite the fact that my friend and her family are constantly on my mind.

Hoping For A Miracle

2011-04-22T15:12:00.001-04:00

On this very holy weekend, when Jesus made the biggest sacrifice for all of us, I'm praying so hard for my best friends brother. After going back and forth between being stable and then losing ground, N. has been given 72 hours to live. My friend's on her way back down to WV with her father. I am completely sad for the family, and trying to pray so hard for a miracle.

Daily Ponderings

Congenital Heart Disease

Happy Birthday Wishes

Whoa, I Got Tagged!

A PH Kind Of Day

A Comparison Of Sorts

Hmm, What To Eat??

Why, Hello Winter

Special Delivery!

Happy Spring! Oh, Wait....

Argh

Happy New Year (Three Days Late)!

Ending And Beginning Anew

Well, Crap!

Merry Christmas!

Layaway Angels

Ooops

Getting Prepared

It's A Major Award!

Do You Like Giveaways??

Holidaze

Cure?

Inhaled Medication

Oral Medication IV

Oral Medication III

Oral Medication II

Oral Medication

Another Medication

The Gold Standard

Eisenmenger Syndrome

Oxygen

Diagnosis

Cool Dream!

Abbreviations

Categories

It's November, And That Means......

Clean Freak

Unexpected Accomplishment

One Less Pill To Swallow

Where Are My Posts? Part Deux

Where Are My Posts?

Mittens | Vote for the Next Pet Star - Photo Contest | Show Us Your Pet's Healthy Smile

Wedding Weekend

Happy Birthday To Me!! :)

A Sweet Sign?

About Time!

The Air Show!

September Weekends

Anytime Now!!

Celebrating Your Special Day

September Days

Changes

Painting Project

What's Shakin?

FINALLY!

Awesome Groom!

Bill Shrinkage

Guess What Came In The Mail?

I See You

Waiting and Planning

Surprise! You're In The Hole!

Wide Awake

Finally, An Answer (Maybe??)

July, Over And Out!

Is This Thing On??

Just Some Thoughts

Melting

Trapped

Calmer Days!

Almost Near The End

Tired!

Busy Family Week!

The Things Kids Say!

What Would You Do If You Were Normal?

An Awesome Evening!

Oh Snap, June's Over!

Where'd The Week Go?

Not Your Typical Night Time Story

Paying People To Stay Home

Game Over