Tuesday, December 28, 2010

Almost Strike Two

When I got up (late again) this morning, I fired up the laptop and got Mittens' breakfast while I waited for it to load. I went to Facebook to see if Lisa had updated anything about coming home. I didn't see a particular message on her wall, but I did see that she had commented to a friend that she wouldn't be making it home. I was really crushed. I spent most of the day just really feeling bummed that she wouldn't be making it, and that this Christmas just didn't feel like Christmas at all this year since we couldn't celebrate it as an entire family. I lazed around for the longest time, but finally got to doing dishes and cleaning up some of the kitchen when my mom called me. She told me that Grandma and Aunt Joan were on their way, which I already knew from talking to my Grandma earlier in the morning. And then she said that Lisa and Brandon were making their way home, too. WHAT???? I swear I lit up right then and there with a huge smile on my face! They were making their way home!!! I guess they were going to drive as far as they could today, find a place to stay tonight, and then leave early in the morning to finish the trip. I've been praying as much as I can that they'll have a safe trip here!! I am so happy, we are actually going to have a family Christmas!!!

Sunday, December 26, 2010

Strike One

I got up late this morning, got dressed, fed Mittens, and put a load of laundry in the washer before I finally decided to try Lisa to see if they were able to leave on their trip up here. I called her house number, and she answered on the third ring. Boooooo. That told me the trip so far was a no go. It had occurred to me overnight that we haven't even seen Lisa and her little family since last Christmas. The thought that they may not make it at all if the weather isn't better tomorrow is a bit more bothersome than I'd like to admit. I'm praying and crossing everything I've got that they can make the trip tomorrow, or else they aren't making it at all.

Today was a cold one, so I just stayed home and did 3 loads of laundry. In the afternoon, while using the laptop, I sorta had a hard time seeing and concentrating. Then my head started killing me. I had gotten a migraine that snuck up on me! Usually I see an aura first, but not this time. I had to take an Excedrin before finally laying down, and I fell asleep for almost 2 hours. I guess I needed it! I felt much better when I woke up, so I made dinner, took a bath, and I've just been hanging out online chatting and playing around. Tomorrow is another rather brisk day, so I'll probably work on some jewelry orders for a couple people. I can't wait until later this week when it'll "warm up" so I can try to browse some stores for deals. I'd like to get a new Christmas tree, one that doesn't involve about 50 pieces to put up. Hopefully there is something left out there that's a good deal!!

Friday, December 24, 2010

Almost Time

In several hours, it will officially be Christmas. I really can't believe the holidays are here. It didn't seem like it took all that long from Thanksgiving until now for the day to arrive, but bam! It's right on the doorstep! I'm looking forward to the upcoming gatherings with my family, especially after tomorrow since Lisa will be here with her little family by Monday night. We'll get together for an appetizer dinner tomorrow, but our Christmas celebration, complete with a dinner outing and opening gifts, won't be until Tuesday evening. So it's like we get to have Christmas twice. :)

When Christmas passes, there's just one more week until a whole new year begins. I have been thinking back on this year a lot lately, and I while it's been a pretty good one, I do realize I'm still grieving Euan's loss. It's been over 9 months since he died during his surgery, and I still cry sometimes at night wishing he was here. I never expected to lose another very close friend within a year. Yes, I do still miss Mason, but the shock of losing Euan not even a year after that seems to hurt even more. I'm trying my best to remember the good times, but the what-ifs haunt me. I know that more time will help ease the pain little by little.

What I did not expect this year was for my jewelry sales to be pretty consistent. Usually I make most of my money during the holidays, but this year I was pretty lucky to have sold something every single month in 2010. Will that happen in 2011? I would like to think so, but who knows? I'm just glad that so many people bought something lovely, and I hope to continue to make beautiful things!

2010 is ending on a good note for my dad, especially this month. This past week alone, he got another good report on his visit to Roswell, and by this time next year, he will hopefully be declared cancer-free. He also put a new-to-him truck on the road, something he's desparately needed for several years because his old truck was in such poor shape, I'm surprised he could still drive it. And today, he finally bought a new tv that he's been hoping to get for awhile! Oh yes, how could I forget? He found out last week that he was approved for V.A. benefits since he had prostate cancer and he was in Vietnam. I'm beyond happy that he got that, let me tell you! So I'm glad he's doing fairly well, despite all the aches and pains I know he deals with on a daily basis.

I'm really hoping that 2011 will bring better health for my mom. I'm worried about her so much. She hasn't been feeling very well for awhile, and she didn't get the best of news about her health in the beginning of the month. So I'm hoping that some changes will help get her back on track.

2011 will bring another brother-in-law to the family in the fall. It'll be hard to believe I'll be the only one of the 4 of us not married. That's either something I'm doing wrong, or maybe that's a wise decision. lol

I don't know what else 2011 has in store (does anyone really know for sure??), but I'm hoping it'll be a better year for all of my phriends. I pray for a cure for pulmonary hypertension. I have lost too many phriends from this disease, and I worry about the fact that I'm starting to become numb to the losses. Of course, I do miss the ones who have gone very much. I think I'm just getting used to someone passing, and it bothers me. So I'm hoping for a miracle, hoping for someone to have a breakthrough and to finally figure out what can stop this disease from killing so many. I especially want a cure for the children living with PH.

A Christmas Story is going to be starting it's 24 hour marathon on TBS shortly, so I'm going to get my jammies on and watch at least one round (if I don't fall asleep from the complimentary wine I had with dinner tonight at Michael's after church lol)! Merry Christmas to everyone out there, and may you have a wonderful day with your family and friends! :)

Sunday, December 19, 2010

Busy Days

I think I left off wondering whether or not I'd be stepping out of the house on Thursday. Well, I did! I just didn't make it to rehab Thursday morning. I had a slight headache, and I knew I had other places to go, so I didn't want to overdo it. When it's cold weather out, I don't have the energy to just push myself anyways to do the things I want to do. I tend to be able to do that a little bit more when it's warm out, but definitely not this time of year. So I went out with my mom. I had a package of jewelry to mail out (a rather large order, I was surprised when I saw the email for it!), and money to put into my credit union, and then we had a quick lunch at Wendy's, and headed to Mandy's house for a bit. We stayed there with my nephew while Mandy picked up my niece, and shortly after they got back, we went to Napa to get a gift for my dad. We had planned on going to Walmart, but it was getting late in the afternoon, and my mom needed to get home to start making dinner for that night. Everyone was coming over for my dad's birthday! So we stopped at Sam's Club for a cake, and then my mom dropped me off. Joan picked me up about an hour or so after that, and I hung out with my family for the rest of the evening. It was a fun time!

Friday was another busy day. I had a former teacher stop by to pick up a couple necklaces I made for her 5yr old granddaughters. She's such a sweet lady, and I think I already have orders to make for her in upcoming months for birthdays! Yay! The o2 guy came quite a bit earlier than I expected (at least from this particular guy...he's usually very late), and so that allowed my mom to pick me up for Walmart at a much better time. First we headed to Bob Evans for lunch, both of us ordering soup and something hot to drink because we were just freezing!! After that we headed to Walmart, where it felt like we spent decades wandering around the store. lol

I returned a couple items first, and then walked around with my mom, getting some things here and there. I wanted to go into the kitchen appliance area to look for a hand mixer, because my mom very recently broke hers, and Joan told me it was on her list of things she'd like to have. I thought I would try getting it tomorrow since I have to go out for bloodwork, but I just didn't want to go into Walmart AGAIN. So I made an excuse to my mom that I needed to look for an electronic can opener, and she said ok, and that she'd be in the toy area. Ok, that part worked! I almost thought they didn't have anything, until I found the mixers on one end shelf. I picked one that I thought looked ok, and considered my next step. How was I going to hide this from my mom?? I thought about going to the cash registers to pay for it and then just carry it with me, but the registers were a bit far from where I was, and I was already starting to get tired. So I took my rather big scarf and kinda hid the box behind it without looking like I was trying to steal it. lol I headed toward the toy area, and when I found my mom, I just pretended that I wasn't carrying anything. She was so busy looking for a certain toy that I don't think she cared. I told her I was going into the large Christmas area to browse, and when I went, I saw that you could cash out. Yay! I got to the register with the mixer, and told the lady that I was trying to hide it from my mom, who I was shopping with. So she double-bagged the box, and you couldn't tell what it was! Yay!! I found my mom afterward and just put the bag into the cart. She didn't ask about it, but I think she knew better. lol She kept looking at the toys when I finally told her that I was getting worn down. By then my legs were absolutely killing me, and I was getting sick to my stomach. So we cashed out and headed home. I spent the rest of the evening just relaxing!!

On Saturday, I got up early to start sweet and saucy pork chops in the crock pot, and went back to bed. When I got up again, took a shower and had breakfast, I worked on some jewelry and wrapped a few gifts. I also cleaned the bathroom and washed the dishes, and cleaned some stuff off the kitchen table. My friend, Dee, was coming over after work to have dinner and open gifts. I don't think I've had a friend come over to eat here ever! Well, except for the occasional party. It was rather nice! My upstairs neighbor kindly bought us a bottle of Arbor Mist to go with dinner, and we had an enjoyable evening. We both loved the gifts we got for each other, and we spent quite some time chatting about everything in my living room. When she left, I took a bath to warm up (I don't want to know how many gallons of water I've been using since it became bath season lol), and just watched some tv and caught up on surveys that I needed to do. It was a productive day!

Today also wasn't too bad. I was lazy for most of the morning, but in the afternoon I got some more jewelry done before I had dinner. I made macaroni and cheese in the crock pot, but I really didn't care too much for how it came out. It was horrendously gross, but I'm just thankful I didn't double the recipe like I was going to! I finished a necklace after dinner, watched a Food Network Challenge (an addiction of mine, even the repeats!), and took a bath (shocking!) before spending some time online. Now it's just after 11, and a bit early for me to go to bed, but I am so tired since I didn't nap (for the 2nd day in a row). Guess I'm off to bed early tonight, especially since I need to visit vampires in the morning and go to a store!

Thursday, December 16, 2010

Hoping To Escape

I've been in my house since Friday night's grocery trip. I didn't really care at first, because the beginning of the week was brutally frigid. But I really need to escape from this place! I have many places I need to go to finish holiday shopping and stuff. The temperature is supposed to be mid-20s tomorrow, which I suppose I can deal with as long as the wind chill isn't bitter. I'll just have to make sure I get my butt up early enough to check the conditions and decide whether to go to rehab and elsewhere. I know the weekend will be in the 30s, which is better, but I really hate being out and about on the weekend during the busy shopping season. It's hard for me to find close enough parking sometimes, and fighting the crowds can just be downright exhausting. Sooooo, crossing my fingers that it'll be somewhat tolerable for me to go out!!!

Sunday, December 12, 2010

Stocked Up

With more bad weather and bitter temperatures coming starting tomorrow, I knew last Thursday that I really needed to take advantage of the 30 degree temps that would be sticking around for the weekend. I seriously needed to make a grocery trip, and since I really don't like to be in the stores on the weekend this time of year, Friday was going to have to be the day to go out. I had asked my mom if she could go, and she said yes, but she just wasn't sure when. My parents had taken their dog, Shelby, to the vet's on Thursday for an operation on her foot, and Shelby ended up needing her toe removed. She also had a tooth extracted, and a couple of spots removed from her ears. The poor thing! Shelby is 14 now, although she still has some days where you'd think she was way younger. And of course, she still looks like a puppy because of her small size. Well anyway, my mom didn't want to leave Shelby alone at home, so we ended up waiting until the evening to go out for food. We left around 5:30, after having dinner at their house. Four hours and three grocery stores later, I had enough food to last the rest of the month. lol I sure hope so anyway!! I look in my fridge and I think it's the fullest I've seen it in forever. And my cupboards are exploding, too! I have plans to make certain things, like Nutella cookies, black beans and rice, Chinese cashew casserole, and a few other dishes that were suddenly concocted while actually shopping. Today I am making pepper steak in the crock pot. I got the majority of the ingredients ready last night, and when I woke up around 7 this morning, I decided to just go into the kitchen and throw everything in the crock pot that early. It takes 8-10 hours on low to make, so I should be eating dinner on time! Hopefully it'll come out good!

Thursday, December 09, 2010

God's Special Angel

My friend, Erin, called me on Sunday evening to let me know that her niece, A., had passed away the night before. A. was 10 years old, and had died from complications of pneumonia. She was a special needs child, with many health issues over her short 10 years, including almost always being in a wheelchair. I didn't always get to see A., but when I did, she always had a beautiful smile on her face. She was so innocent to life, she saw joy in so much around her when any other person may have let that joy escape unnoticed. I was really surprised when Erin told me A. had died, it was just nothing I was expecting to hear.

Today was the wake for A., and despite the cold temps, I bundled myself up to get myself to the funeral home. I wanted to be there for Erin, who has no words to describe how she's feeling, and for A.'s family. I didn't realize exactly how difficult it would be to go to a wake for a child. I wrote a short memory of A. for the parents, and then went to view the hundreds of pictures that were put on 3 large pieces of cardboard. I immediately welled up with tears. A. was so loved by her family, and she touched the lives of so many who were lucky to come across her path. In so many pictures, A.'s signature smile lit up the photo. There were birthday pictures, Halloween pictures, many with her family and her cousins, and even some of the Buffalo Sabres hockey players (the one with their goalie, Ryan Miller, got me a bit jealous!). There was even a board of pictures provided by the special school she attended in Buffalo. She truly was a precious gem to so many people.

I walked with Erin and her daughter over to where the casket was located, and when I got near to say goodbye, I got teary-eyed again. A. looked like a little doll in that casket, peaceful and calm, as if she was just sleeping. It was overwhelming. Never in my life have I been to a wake for a child, and just seeing A. there made my heart break. I know that she is in a better place, and that she's running around free and able to do all the things she could never do here on earth, but none of it seems fair. Of course, there are many things in life that aren't fair, and I've experienced to many of them, but eventually I came to just accept them. Right now, my heart goes out to A.'s family and the people who were very close to her and loved her so much. They are the ones who really need some peace and strength at this time.

Tuesday, December 07, 2010

Early Winter Blahs

I say early winter in the title, but winter doesn't officially start for another 2 weeks. Tell that to snow and the bitter wind temps outside. Niagara finally got some snow yesterday and today, and the weather was in the 20s today, with a wind chill in the lower teens. I didn't bother going to rehab today. My rehab ended up being laundry, and going up and down the stairs several times to get four loads done. I also changed the bedding, and cleaned off the kitchen table. Quite a busy day, but I took almost six hours doing everything, and I still got a nap in afterward!

Anyway, back to the dismal weather. It's funny how a handful of degrees can make a difference in whether I venture outside or not. All last week, the temperature was in the 30s, with a couple of days in the beginning of the week feeling almost like spring. I didn't mind going out, and I'm glad I got so much done last week. There are still more stores I need to go to, but now the weather plays a huge factor. The wind chill is especially what I need to pay attention to. It actually gets a little depressing. This week, the temps are in the mid to upper 20s. This weekend may be in the mid 30s, but then the stores get insane. And then at least on Monday and Tuesday, the temps will struggle to hit 20. It's rather aggravating!! It almost feels paralyzing, as if I'm a prisoner of the forecast. I'm already hoping for spring and summer. Why don't I ever consider moving????

By the way, I do find it rather ironic that in the summer, many of my phriends living in the hotter areas around the country feel trapped in their houses because the heat bothers them so much. It's more the humidity, but still. It's quite the opposite for me, because I live for the heat!!

Sunday, December 05, 2010

'Tis the Season

Last Sunday was the start of a very busy week I ended up having, where I spent every day except Monday out of the house for at least a few hours. Sometimes that isn't a problem, especially in the warmer weather when it's not so bad. But since we're now in December (which I find hard to believe), the weather plays a huge role in my adventures outdoors, and if I have to go out, I am usually really tired by the time I get home. I have to bundle up, including long underwear, double socks, turtlenecks, sweatshirts or sweaters, and then add on the coat, hat, gloves, scarf, boots. It's a pain in the butt. Factor in a wind chill, and depending on how low the temperature feels because of that, I won't leave the house at all. This is why I really don't like winter! I find myself staying inside more than being out.

So, last week involved going to rehab twice (I really do hate missing it, especially this time of year, so I try to make it as much as I can!), hanging out at Mandy's house twice, shopping at a few stores, running errands, and filling up my car with a nice tank of gas (which I did on Tuesday, since it felt like spring!). Yesterday I decided I'm going to stay put for a few days and not leave the house, even though I could use a trip to the grocery store. But, I'm not totally desparate for that yet, so I can spare a few days inside just hanging out! I have a few jewelry orders that I finished and I have a couple more to work on. At least I can't say I'm totally not busy!

Racing Up

I had a dream last night that I was participating in a couple of races. One was 700m (meters or miles, wasn't really sure!), and the other was 830m, which seems like a very odd number. But that wasn't the only thing weird about these races. They weren't along the path of a typical running race, they were up staircases. I had to run up stairs. STAIRS. Stairs are not a favorite of mine. Sure, I can do a couple of sets of stairs if I take my time, but this race was in a huge building with tons and tons of stairs. Stairs are daunting to me if I have to go up alot of them and there is no elevator to help me avoid them. So the 700m race starts and all during the race I kept going up the stairs, and I felt so tired, but somehow at the end I had managed to win. Then came the 830m race, which was a bit trickier. Some of the staircases were being worked on and some of them were almost completely gone, making us have to figure out how to keep going up. When the race began, I bolted. I was running up those stairs 2 at a time and I just kept going and going. When I came across a broken staircase, I managed to get around it miraculously, and just kept flying up those stairs. And all the while, my oxygen tubing trailed behind me, getting stuck sometimes, but it didn't keep me from stopping. How the heck long was the tubing if it could follow me up hundreds of flights of stairs?? I got to the top of all the stairs we had to climb, and then I started going down, because, well, that was a part of the race. Reach a certain height and then truck it all the way back to the beginning in order to win. And I won again! How short of breath was I from doing all those stairs?? Surprisingly, I wasn't. Even knowing this was a dream, I was expecting in the dream to pass out from running up the staircases at lightning speed. For some reason, I was ok.

Now, what is this dream supposed to mean??? I have no idea. It was extremely vivid, which is why I wanted to write it down as soon as I possibly could this morning after I got up. I wish I had a clue as to what all of it meant. Maybe some day I will. All I know is that I'm glad that this was a dream, because I most certainly wouldn't survive if something like this was real!!

Monday, November 29, 2010

A lung transplant is usually a last resort for a pulmonary hypertension patient if all other meds are not working or have stopped working well. It is up to the PHer if they want to go through a transplant or not. Having a transplant may mean a cure from PH, but it is not without problems. However, there are many PHers who have survived for many more years with their new lungs!

I have had many phriends who have either had a lung transplant many years ago, or who've had one recently, or who are still waiting. There are some who are doing well, past 10 years with their new lungs! There are a few who didn't make it past a few years with their new lungs. Many phriends who have faced the transplant option have decided to go for it, but I do know a few who do not want to have surgery. It's a personal choice, because it's really trading one disease for a whole other set of problems. But for those who get through transplant and recovery well, their lives change so much, and they are able to do so much more than they could before.

As I type this, I have a phriend who is hopefully going to be awakened from sedation at some point today. He received his gift of new lungs on Saturday! So far, he's doing well, I'm just hoping recovery will be smooth for him!

Sunday, November 28, 2010

All day events with no rest usually make a PHer pretty tired. I suppose anyone could be rather tired from something like that, but for someone with PH, it usually means the next day is already planned as a rest day. Today was one such day for me, although it was a great day! The holiday event went well, and most of the people who bought things from me were people I already knew. But that's ok! It was fun, though, talking to people she's never met and selling something to them. Makes me happy! At the end of the event, since we had one last minute person added to the group, I was given $15 to donate to the PH Association instead of everyone getting a dollar back for the purchase of a table. I thought that was so nice! Now I'm home for the evening, and taking it easy!! This week I'll be able to work on orders that I've gotten in the past week or so. I'm so thankful to be keeping busy!

Saturday, November 27, 2010


When someone with PH eats waaay too much, they get increased shortness of breath. This is because the stomach is so full that it's pushing everything up and the lungs get more constricted, making it a bit harder to breathe!

This is what happened to me on Thanksgiving! lol Our family went non-traditional this year. None of us really felt like cooking the huge meal, so we ordered Chinese food instead. We had to buy it the night before, so it did end up being a bit of work trying to fit everything into glassware that could be shoved in the oven to reheat, or into something microwaveable. And of course, we had sooo much food! But it was a great meal, and everyone enjoyed it and the company! Mandy came over with her little family to have dessert (we still had pies!), and it was a very nice evening spent with my family. I don't think it matters what we eat on Thanksgiving, as long as we are together and having a good time is what counts!

I got home from my parents' and took a bath to warm up, and then tried to keep my eyes open long enough to do some shopping on Amazon.com. I just can't do the Black Friday stuff. It's insane and chaotic, and I don't feel like I really have the energy to stand in long lines, or get up at 3am for that matter! So I spent a good amount of time browsing for toys on Amazon, and ended up Christmas shopping for 4 of the kiddos I need to buy for! I was pretty happy! I had already bought my mom something earlier in the day, so I was excited that I knocked 5 people off my Christmas list in a day. Whooo hooo! I was getting a bit worried because by this time last year, I was almost done shopping for everyone. I hadn't even thought about what to get people until this week. Just not inspired, I guess. Hopefully it'll continue and I'll get the shopping done pretty soon!

Today, I'm going to finish getting ready for a Holiday Extravaganza that I'm doing with a bunch of women tomorrow. I need to go through all my jewelry and see exactly what I have, and to see if there is anything extra I can whip up. I'm excited about this show, and nervous, too. I hope I am able to sell many items! After tomorrow, I need to work on making jewelry for people who've already requested things. It's been nice to keep busy with it!

Wednesday, November 24, 2010

Living with PH means trying to avoid stress. Stress takes a major toll on our health and can make us sicker and keep the meds from working properly.

Tuesday, November 23, 2010

There are times when a PHer has a very good day, in which they sometimes try to do everything on their "To Do" list that they can't do when it's a bad PH day. This, unfortunately, often leads to a day or two of bad PH days afterward. Often this can be very discouraging.

I am one of those who usually overdoes it when I'm having a good day. I KNOW I should be taking it easier, and that I don't have to accomplish everything I need to do in one day, but I'm hard-headed and I just don't learn! So then I need to take at least a day to just do nothing because I went overboard the day before that. It's a vicious cycle that I just don't seem to break out of! lol

Monday, November 22, 2010

Some people with pulmonary hypertension may be able to continue working after being diagnosed. However, there are many who cannot keep up with the demands of the job they are in because it is too physically (and perhaps emotionally) draining.

There would have been no way I could continue working as a preschool teacher, yet I would have if my doctor had not told me to quit my job. When I look back at how I felt when I was working, I wonder how the heck I ever got through my days!! The sheer exhaustion I felt when coming home from work every day was terrible, and while I'm sad that I can't continue teaching in a classroom, I'm so thankful that I'm feeling so much better than I did back then because I'm no longer working.

Sunday, November 21, 2010

"But you don't look sick," is a very common phrase so many PHers hear, and sometimes it is very irritating. This is when The Spoon Theory comes in handy. The story can be read here.

Saturday, November 20, 2010

Exercise is an important part of maintaining health, but it can be very difficult for PHers to do. Many PHers are short of breath with minimal exertion. Each patient is different. There are some who attend pulmonary rehab, or have asked their doctor what type of exercise may be beneficial to them. Cardiovascular activities and ones focusing on muscle tone are important! PHers must not over-exert while exercising, and must give themselves enough recovery time to see if they can continue with more activity.

I have said so many times how much pulmonary rehab has really made a difference for me since I started it over 2 years ago. There are some days when I'm dragging trying to get through exercising, but there are some day when I really do feel great. It's an incredible feeling to be able to exercise when it's something I never did growing up. Not to mention, all the muscles I have, especially in my arms! Whoo hoo! LOL

Friday, November 19, 2010

Many people living with PH must watch their salt and sodium intake because of possible fluid retention. Fluid retention can make it hard for a PHer to breathe. The need for diuretics is very common for PHers to help them lose excess fluid. Watching salt intake, buying low salt or no salt foods, cooking fresh food and using lots of spices and herbs are some ways for a PHer to control salt consumption in their diet.

I think I am one of the lucky PHers who really don't have issues with salt and require the need for diuretics. This doesn't mean that I don't watch my sodium intake. I don't cook with salt 95% of the time, and I read labels and avoid products with alot of salt in them. And I like to cook fresh as much as I can. Let's face it, PHer or not, salt really isn't good for anyone out there!! And it really boggles my mind watching people, like my dad, pour salt all over their food. I actually find that much salt really disgusting!!

Thursday, November 18, 2010

Being diagnosed with pulmonary hypertension can be an emotional rollercoaster for most PHers. They go through denial and anger quite often before they can finally wrap their head around what they are dealing with now. Learning to cope with limitations can be extremely frustrating, but eventually most PHers learn to live with a new "normal."

Wednesday, November 17, 2010

All the meds for pulmonary hypertension have side effects. Some sides don't stick around long. Some do. Side effects include one or more of the following, depending on which med/meds are taken: headaches, nausea, swelling in the lower extremities, liver damage, vision changes, nasal congestion, jaw pain, dizziness, nose bleeds, difficulty sleeping, heartburn, flushing, diarrhea, bone pain, rashes, infections, throat irritation.

When I started Tracleer, I got headaches, but I was nauseous for almost 2 weeks before that went away. When the dose was increased the next month, I went through the same side effects for a couple weeks, and since then, it hasn't bothered me.

When I started Revatio, the headaches were really bad for a couple weeks. Excedrin seemed to help, but they were almost constant before they started dissapating. And then I increased the dose, and they came back. The one side effect I get most often from the Revatio, usually after my last dose of the night, is stuffiness in my nose. It happens usually half an hour after taking it, and clears up (sometimes) after maybe and hour. It sure is a pain in the butt!!

Tuesday, November 16, 2010

Today is PH Blogging Day!

A few years ago, a phriend wanted to do something for PH awareness month, but being that she could not physically go out and about and spread the word, she came to me with an idea to blog about PH. I thought it was a wonderful idea! So in my post today, I decided to share how I've felt growing up with this disease, before being treated, and even after.

I have said before that I was born with pulmonary hypertension and congenital heart disease. Neither were discovered and diagnosed until I was 9 months old. The doctors couldn't repair the 2 holes in my heart because it was too late to do so, so they told my parents I might not live until 1, or I might live 50. In 15 more years, I WILL hit that 50 year mark, and I hope to do so while still in pretty good shape.

Obviously, I remember nothing as a baby with PH. I only know my mom told me that I was a pretty good baby. I didn't cry much, probably because crying made me way too tired. I didn't gain pounds, I gained ounces. Breastfeeding was too exhausting for me. I slept alot. But, I survived all that and moved on into childhood.

I remember bits and pieces from being a small kid. I do remember going to gym class in school for the only time in my life when I was in Kindergarten. Although my mom had told the teacher that I was not allowed to participate in gym, the teacher had me walk down the street to another school's gym with my class, and then I had to sit on the stage watching my classmates play. Thankfully, that was only once, because when my mom found out, she was not happy. I never went to gym class again. What I did in the meantime, I don't remember until I was in middle school. That's when I would go down to the first grade classroom and help the teacher until I had to go back to my own class. It was then that I knew I wanted to teach.

I remember in 4th grade, during lunch, I would be allowed to pick a friend to stay with me in the classroom to eat since it was too hard for me to go down the stairs into the basement and back up. This only happened in 4th grade, and I'm not sure why. I had to huff and puff up and down those stairs, which seemed like a million every time, when I was in the older grades. My heart would always feel like it was going to explode on the way up the stairs. When the class had to stop going up because someone was getting yelled at, I was thankful for the small rest and the small chance I had to catch my breath so I could continue.

When we started computer classes, they were down in the basement. I remember after class, I'd get a "ride" back up to the classroom from my computer teacher. He would carry me on his back until we got to the door. I always appreciated that. I imagine I didn't weight that much to him, since I probably was the size of a stick. lol But still, those stairs...let's just say that they were not my friends.

Field trips. Wow, field trips weren't always fun for me. Sure, the bus trip there was fine since we were sitting. But when we got to our destination, sometimes the walking was just too much for me. I couldn't keep up with everyone. I felt so conscious about it, and I'd try so hard to stay with the group. Many times I was thankful for any breaks we had. I know for sure that field trips were sometimes very hard to deal with.

In my neighborhood, there were alot of kids when I was growing up. We often played together, and I tried my best to keep up as much as I could. Playing tag and hide and seek were often hard because of the running around, but I did it. I tried playing baseball, but that just didn't work. So many times I felt like an idiot for not being able to keep up with anyone. But the times when we played sit down games, or played with Barbies or whatever, those made me happy since we didn't have to MOVE anywhere. And we used to do things like make tents on the front porch with blankets and spend most of the day under there with games, and I remember being happy then!

I opted to go to the Catholic high school after graduating from 8th grade for 2 reasons. The first being that most of my friends from grade school were going there, and the second being that the public high school was just so huge and intimidating. You wanna talk about stairs?? There were 4 floors and I can't imagine trying to get to a class in 4 minutes. They had elevators, but are they always guaranteed to work? No way. So off to the Catholic high school I went. Even though the stairs weren't as many as what I had to deal with in the grade school building, it was walking the hallways that got to me. The times when I had to try to get from one end of the building to the other in 4 minutes were sometimes unbearable. And I always was the type who hated to be late for things. So I huffed and puffed my way through high school, and when I graduated, it was time for college!

College, a completely different change to my life, not only mentally but physically. Not only did I have to walk far to get to some classes, but I had to leave buildings to get to another one, and the elements weren't always on my side. Winter in Western NY isn't pleasant, and often brutally cold and windy. And being that the college was close to the gorge, the winds there were downright awful sometimes. It's a miracle that I was never lifted up into the air and carried off to Canada. Fighting those winds was horrendous on my lungs and my heart. When I would finally enter the building for a class, I would have to hide in the bathroom just so I could catch my breath for 5 minutes before I could get to my classroom. THANK GOD there was an elevator. I usually only had to go to the 2nd floor, but just trying to climb stairs after feeling like my heart would explode was frightening. I am thankful that many of the buildings where I had classes had elevators. It did help some, but many times, I was very tired getting to class. And when I was extremely tired, I had a hard time focusing on the lecture because I had lost so much oxygen I felt groggy. But despite it all, after 4 long years, I got my education degree and I could begin my teaching career!

I only subbed for a couple of months before getting a job at a daycare as a preschool teacher. While I loved being around the kids, it was exhausting and taxing on my body. I also got sick more often than I had ever been when I was younger, and that was alot. I definitely had to go back home after work and take a nap just so I could continue through the day, even though naps were not that uncommon to me. It just seemed like I needed them more.

Two months after working at the daycare, I was hired as a classroom teacher for Headstart, which is federal program for preschool-age children. I was so thrilled because I had my OWN classroom! Not only that, but the school where I was to work was only one block over from my house! Yay! Ironically, the building was the same one I had walked down to in Kindergarten to sit and watch my classmates take gym class all those many years before. Considering I had only been in that building once before (and I was 5), I did not realize that they had many staircases. And my classroom was on the 2nd floor. And there were no elevators. And I had to take the class down into the basement for breakfast. And lunch. Which meant, I was doing stairs minimally 3 times a day, but more than often it was many more times than that. But, I took them slowly most of the time, and stopped my class on the stairs often on the way back up, mainly to catch my breath. The first year of teaching went pretty well, although I'd go home pretty tired most of the time. My second year of teaching went ok, but I felt as though sometimes I wasn't performing my duties as a teacher as well as I would've liked since I was tired much of the time. I skipped out on some lessons I'd done the year before, and I didn't have much energy for things. But I still loved my job and tried the best I could!

My third year as a preschool teacher fell apart slowly. The school year started out ok, but I had several students who were a handful. One of them tried to choke me as I sat on the floor playing one day, and I had to put him into a basket hold and had my aide call the principal up. I can't put into words how tiring that episode made me feel, and I had such a hard time focusing the rest of the day because the sheer exhaustion left me in a daze. I remember another time when this same student ran away from me while we were outside waiting for the bus, and trying to catch up to him and bring him back made me almost pass out. I'm actually surprised I didn't. After he finally got on the bus and I went back into the building, I remember being near one of the railings to the staircase, and somehow I crashed my forehead on it and started bleeding. I think it happened because I was in such a daze after running after the child outside (where it was also cold). I also think I scared the crap out of the nurse because I looked so horrible when I went to her for a bandaid.

I spent my third year of teaching pretty sick, and not with just a cold. I had double pneumonia, then bronchitis, and it was when I was on my third respiratory illness that my doctor told me to quit my job. It was heartbreaking for both of us. She knew how much I loved teaching, and I knew how much I would miss being a teacher. But had she not told me to quit, I may not be here today, for I would've never thought at the age of 24 to retire.

During all this time as a teacher, I was also enjoying a social life filled with going out to dinner with friends often, but also going out to party. Most weekends, I was at a bar with my now ex-best friend. We did so many things together, usually. Shopping, bar hopping, hanging out, whatever, we had fun. But I remember one day in particular, I thought I was seriously going to need medical help. We went to the Peach Festival one September, and this particular year they had it at a different location that required us to walk up a pretty major hill. Honestly, I'm not sure how or why I made it up there. By the time we finally got to the top, I had to sit down immediately. I thought I was going to throw up. My heart felt like it wanted to pop out of my chest and run away, and my legs felt like they were on fire. My ex-friend left to find some water for me. I had to sit quite a long time before I felt like I could get up and we could walk around. But I felt like hell, and it put a damper on the day. By the way, I did walk down the hill. Down is waaaaaay better for me than up.

I had also gone back to college for my masters degree during my third year of teaching, and it was hard not knowing if I should continue once I had to quit my job. I was getting my masters in early childhood education, since I realized how much I wanted to continue working with small children. I opted to finish my degree, and although I can't use it in the way I want, I am glad that I got it. I was thankful that although I went to a college with a huge campus, I had classes in only a few buildings, and I only took 2 classes at a time. I was able to park in an area meant for handicapped parking, and it wasn't as horrible a time getting into the buildings, although I still did get rather tired.

The last couple of years before I was finally able to get treatment for my PH symptoms were very rough. I realized how much as a kid I was able to deal with the shortness of breath and fatigue alot better than as an adult. I think maybe it's because I grew up feeling like it was normal for me to be so tired. The older I got, the more aware I was that this just wasn't right, that something was really wrong, although I still felt it was MY normal. I didn't know anything else. There was one night that really made me realize how bad everything was, although I can't go into details about it. After that was when the elephant moved in, right onto my chest. I never had that elephant in all the years I dealt with PH. It was something new. I actually thought maybe it was asthma, and I was even given inhalers that didn't do diddly squat. Eventually I was referred to the Cleveland Clinic Foundation for transplant evaluation.

I found out before going to CCF that I would need to be able to do a 6 minute walk. I thought, what?? I wasn't sure I could even do that! So, I began using my sister's treadmill in the basement. I thought I was going to die. It was so hard to do, and the shortness of breath was awful. My legs felt like jelly every time I finished walking. I tried to go on the treadmill every day, or every other day at least. I was determined to be able to do that test! I eventually got up to 6 minutes on the treadmill, but it was agony. When the time came to go to CCF and do the test, I'll never forget how I felt. I kept telling myself to keep going, to ignore my heart racing so fast, to pretend my legs weren't roaring with pain, to try not to give in to the feeling of puking my guts out everywhere. They were the worst 6 minutes of my life, even though I've had to do that test every time since I've gone there, and I will have to do it every time I go back.

My first appt at CCF required many other tests, and led to 2 prescriptions for the time being: Coumadin, a blood thinner taken every day and requiring lots of bloodwork, and oxygen to be worn all the time. While I was so reluctant about the oxygen, eventually wearing it constantly made that elephant disappear. Several more visits later, I was prescribed Tracleer. Most of the meds need special authorization from insurance, and it can take several weeks before the patient gets the drug. While waiting to see if I was going to even get Tracleer, my parents and I had gone on a trip to visit my uncle and his family in Michigan. My PH symptoms were still very bad at that time, and I felt so depressed on that trip. I remember spending most of the time in the room I slept in, writing and listening to music. I wondered if I would ever feel ok, I wondered what my future held. Would this new pill even help me? Would I need a transplant soon? It was a very scary time for me.

Tracleer arrived in October, and on the 12th of that month in 2003, I took my first pill. I didn't notice anything for weeks, and still wondered if it was going to work at all. One day, when I went to vote during an election, and I walked back to the parking lot to get into my car, I realized that I wasn't very short of breath as usual. I broke out into tears. I went home, and realized I wasn't gasping for breath the minute I got into the door from my garage to the house. I cried even more. The changes in symptoms were subtle at first, and eventually they kept improving. I couldn't believe that life the way I had known it all those years - the constant fatigue, the shortness of breath, the limits on what I could do - was really not existing anymore. And it was WONDERFUL!! Tracleer worked well for me for quite awhile, and I could even exercise! I even danced at my sister's wedding 8 months after starting it! Eventually, though, I could tell it wasn't working quite as well as in the beginning, and I added Revatio on August 16th, 2007. The combination of Tracleer and Revatio have really worked for me. For a little over 2 years now, I've been able to go to pulmonary rehab twice a week, and I really believe that's helped to keep me pretty stable. My PH symptoms are still around, but they are not constant. I don't always get short of breath walking places, and I am able to do a bit more than I used to before meds. I am so thankful for all the meds out there to treat PH. I hope to not need another one for a long time, but if it comes down to it, I'll do what I can to keep fighting this disease!

Monday, November 15, 2010


I had a dream last night, or early this morning, about black lab puppies that were being offered up for adoption. When I got up and thought about it this morning, I realized this was actually a Part II dream, because I remember dreaming about the puppies before. The first dream, they were too little for me to take home if I wanted them. By the time I had this dream, the puppies were much bigger. And for some reason, they were no longer black. Actually, they kept going back and forth from being black labs to golden labs, depending on the scene. But in the dream, I kept trying to figure out whether I wanted one or both of them. My family kept telling me I couldn't have either, because how could I possibly take care of them? And that thought also kept going through my mind. I'd never be able to bring it outside all the time, especially in winter, and I could never take it for a walk because I just don't have that kind of stamina. I remember someone ended up with one of the puppies in my family, and I was trying to convince Mandy and her hubby to take the other one, mainly because the puppies were siblings who'd grown very close to each other. When I finally woke up, I had an overwhelming sense of sadness. I think it was because I knew I'd never be able to take care of a dog. It seems strange, I am more of a cat person anyway. But to know that the option of having a dog is off the table made me a little upset for a brief moment. Just another thing that I need to cross of my list because I have PH.

(What made this dream not hurt so much was opening up my bedroom door to find Mittens waiting for me. He's all I really need!:) )
Tyvaso, or treprostinol, is another inhaled treatment meant to relieve PH symptoms. It works by opening up the blood vessels in the lungs, which helps to increase activity in the patient. The difference between Tyvaso and Ventavis is that Tyvaso inhalations are not as long, and does not need to be done as many times a day. This does, however, depend on a patient's needs.

Sunday, November 14, 2010

Ventavis, or iloprost, was the first inhaled treatment for PH symptoms. It works by direct vasodilation of the blood vessels in the lungs. Using Ventavis has shown improvement in shortness of breath and an increase in activity. Ventavis treatments are done every 1.5-2 hours a day, from 6-9 times a day. The cost of Ventavis is around $60-70000 a year.

Saturday, November 13, 2010

Adcirca, or tadalafil, or Cialis, treats symptoms of pulmonary hypertension much in the same way as Revatio. It works by dilating the blood vessels in the lungs, allowing more blood to flow and increase physical activity in the patient. The major difference between Revatio and Adcirca is dosage. Revatio is 3 times a day, Adcirca is just once. Important to note, with both of these meds, nitrates must never be taken! It can cause an unsafe drop in blood pressure.

I forgot to mention yesterday with my post on Revatio that I've been taking it since the summer of 2007. I have found that the combination of Tracleer and Revatio have improved my ability to do physical activities, such as pulmonary rehab. I'm so thankful that right now, these 2 meds have allowed me to be a bit more active than I was many years ago!

Friday, November 12, 2010

Revatio, or sildenafil, or Viagra, is another pill to treat PH symptoms. It works by relaxing and widening the blood vessels in the lungs to allow the heart to pump more blood through the lungs. It helps to reduce blood pressure in the lungs and allow more physical activity. It is taken 3 times a day. It costs around $10000 a year.

Thursday, November 11, 2010

Letairis, or ambrisentan, is another oral med to treat symptoms of PH. It works much in the same way as Tracleer does, blocking endothelin to allow for reduced blood pressures in the blood vessels, and increased activity in the patient. Monthly blood tests are required to check for liver damage and pregnancy. It costs around $48,000 a year.

Wednesday, November 10, 2010

Tracleer, or bosentan, was the first oral med treatment approved for PH. It works by blocking the effects of endothelin, which causes blood vessels to narrow, and scarring and overgrowth of the muscle walls of the blood vessels of the lungs. Tracleer can reduce the blood pressure in the lungs and improve activity and wellbeing. It is taken twice a day. Liver tests must be done monthly since it can cause liver damage. Women must do pregnancy tests monthly since Tracleer can cause major birth defects. It costs around $50k a year.

I began taking Tracleer on Oct. 12, 2003. It changed my life. I didn't notice it working at first, but after a few months, subtle changes were appearing. I wasn't gasping for breath after walking long distances. It was truly life changing for me. I am so thankful for those people who came up with it as a treatment. I'm hoping those same people can also find a cure!

Tuesday, November 09, 2010

Remodulin, or treprostinil, works as a vasodilator to widen the narrowed blood vessels in the lungs, and inhibits platelets from clumping. Remodulin can be use by IV, subcutaneously (both use pumps), or by inhalation. Inhaled Remodulin is called Tyvaso. Remodulin can cost around the same amount as Flolan every year, depending on dosage needs of the patient.

Monday, November 08, 2010

Flolan, or epoprostenol, was the first FDA approved medicine to treat symptoms of PH. It is a continuous IV through a permanent catheter placed in one of the large veins of the heart. A pump is used to deliver the med into the system. Flolan works by dilating the blood vessels and helping the right side of the heart pump more blood through the lungs. The cost of Flolan is at least $100k per year, sometimes higher depending on patient dosing.

Perhaps The Coast Is Clear

Last Wednesday I was feeling more tired than usual, but last Thursday I felt as if I might be coming down with a cold. I went to rehab and ran errands, but then I went home. I spent this weekend in the house laying low, overdosing on Vitamin C and tea and soup, and just getting as much rest as I could. I do NOT want to get sick. I think I've avoided getting a cold, though. The only issue I keep having is a slight headache at the base of my neck. Nothing seems to help it, so I'm trying my best to ignore it. Seems to be working.

I did do some things around the house during the weekend, but what I was most happy with was working on jewelry. I made an illusion necklace set and a single illusion necklace on Friday night. Last night and today, I ended up making 12 bracelets and a few pairs of earrings. Friday night and tonight, I sold a few bracelets that I had in my Etsy store. Overall, a pretty good weekend jewelry-wise!

I plan on breaking out of the house tomorrow to get to the post office (gotta mail off those purchases!), and maybe a couple other stores. I'm still not going to push myself, so if I don't feel like doing too much, I won't. I do think I need some fresh air, though, and at least it won't be as cold as it was this weekend. So now it's off to bed so I'll have energy for my Monday!

Sunday, November 07, 2010

In 1975, when I was diagnosed with pulmonary hypertension, there weren't any treatments available. Twenty years later in 1995, the first FDA-approved treatment became available in the form of a continuous IV med called Flolan. It is still considered the gold standard of treatment for PH, especially for patients who are very ill. Today, there are now 8 FDA-approved treatments for the symptoms of PH. There is still no cure.

Saturday, November 06, 2010

Although pulmonary hypertension is a lung disease which effects the heart, there are many pulmonologists (doctors who specialize in lung conditions) and cardiologists (doctors who specialize in heart conditions) who do not understand PH at all. Therefore, PH patients need to see a PH specialist, a pulmonologist or cardiologist whose main or only focus in their practice is treating PH patients.

A reader asked me what my first indication of having PH was, or did my doctors find it. Well, a doctor did realize something was going on with my heart when my mom brought me for my first set of shots at a free clinic when I was a baby. The doctor told my mom to talk to my pediatrician, but that doctor didn't think anything was wrong. So, when my mom brought me for my second set of shots at the same free clinic, the same doctor told her there was something very wrong, and that I looked cyanotic (blue). My mom once again told my pediatrician, and I was scheduled to see a pediatric cardiologist at Buffalo Children's Hospital. When my parents showed up with me, there was a waiting room full of other parents and their children, but I was taken immediately before all of them because of how I looked. They did tests, including an echo and EKG. At some point they did a right heart catherization. I know they did a lung biopsy. And at 9 months old, I was diagnosed with pulmonary hypertension due to congenital heart disease. I have atrioventricular canal, with means basically that I have 2 holes in my heart. I was diagnosed in 1975.

Friday, November 05, 2010

Pulmonary hypertension may be suspected by an echo, but the ONLY test used to actually diagnose PH is a right heart catherization. Other tests performed to help determine whether PH is the only thing wrong, or if the person has underlying causes for PH are blood test, chest xray, pulmonary function tests (PFTs), 6 minute walk, nuclear scan, and electrocardiogram.

Thursday, November 04, 2010

Another Year of Exercise

This morning I reluctantly got out of bed to get ready to go to rehab and then do some errands. I think I'm coming down with something, so I really debated for quite awhile whether to even go outside. But, I did, and I left a little bit early so that when I got to the hospital, I could see the Financial Advisor about getting help to pay for rehab for another year. Despite how I'm feeling, I'm glad that I went. She was readily available, she remembered me from last year, and she set it up and printed out a copy for myself. She told me next year when I start thinking about turkeys, to come see her again. lol I'm glad that is taken care of. I don't know what I'd do if I had to stop rehab because I can't afford it anymore on my own. I really do think it's helping me so much!
Major types of PH include: IPAH (Idiopathic Pulmonary Arterial Hypertension) - cause is unknown; FPAH (Familial PAH) - the cause is due to genes; APAH (Associated PAH) - the cause is due to another disease or chronic condition, including connective tissue disease, congenital heart disease, chronic liver disease, HIV, drugs, toxins, and more.

Wednesday, November 03, 2010

You cannot get pulmonary hypertension from smoking. You cannot get it from being overweight. You cannot get it from being lazy and not exercising. Any doctor who tells you this is full of crap and doesn't know a thing about this disease.

Tuesday, November 02, 2010

Pulmonary hypertension is not regular high blood pressure. It is high blood pressure in the arteries of the lungs that can lead to heart failure.

Monday, November 01, 2010

To Make Aware

November marks PH Awareness month! If I asked 5 people if they knew what pulmonary hypertension was, I would actually be shocked if ONE person knew. This disease really needs more awareness! If you or someone you know are experiencing shortness of breath from doing the smallest task or just walking down a hall, are having fainting spells or dizziness that cannot be explained, or are extremely fatigued all the time, please get to a doctor! Pulmonary hypertension may not be the cause, but it's better to be safe than sorry in getting it checked out as soon as possible!

Saturday, October 30, 2010

Another Phriend Lost

Becky was a 21yr old woman who had been waiting on the transplant list for almost a year and a half. She needed a new heart as well as lungs. She had pulmonary hypertension and congenital heart disease, and was diagnosed when she was 6 years old. She was a special case, as her heart was located on the right side of her chest instead of the left, and it was backwards. It made a complicated case for the doctors, but they listed her because they thought they would be able to do the transplant whenever that time came.

Becky finally got her call last night. I saw it on her sister's Facebook page, and I actually cried. I'd been praying for her for so long, and I was so happy she was finally getting her 2nd chance. Of course, I was hoping this wouldn't be a dry run for her. But when I got up this morning, I received an email from Becky's mom saying that the surgery had started at 6:15am my time. I prayed all day that the surgery would be successful and that Becky would do well. However, tonight I heard from a phriend who talked to Becky's mom that Becky wasn't doing well, that the heart wasn't responding well, and that they had to take Becky back into surgery to stop some severe bleeding. A couple hours after that, I found out that Becky had died at 10:02 my time (EST). I am very saddened to know that she never got her chance to heal from the surgery and experience life more. She was so young, and she had been sick for so very long. It's heartbreaking that I've lost, well, that the PH community has lost, another phriend. It's also maddening. We need a cure. Not tomorrow, TODAY. Too many are dying because there needs to be a cure. I pray for one every single day.

In the meantime, I'm praying for Becky's family, who have got to be shellshocked and devastated. Not only was Becky's life put on hold, but theirs as well. They all wanted so badly for Becky to be better. Her mom, especially, did every single thing she could to care for Becky. So I pray for strength for them, because they are going to need it. They are going to take a very long time to heal, I'm sure of that.

Tuesday, October 26, 2010

Out And About

Today I had such a busy day. I went to rehab, and after I was done, I went home briefly to change and get some lunch. I got all my things ready to spend some time out in Amherst, which is about 20 minutes or so away. It all depends on how fast I can drive up the boulevard to get there. I met a phriend for coffee at Barnes & Noble for a little while, and that time just went too fast! I had to leave in time to make it to an appt with the dermatologist I see. During the appt, I told him that I don't get the breakouts like I used to, so the antibiotic I've been on seems to be helping. However, I'm still dealing with such oily skin that it's driving me insane. He wants to put me on a topical gel, but my insurance just won't cover it. So, he gave me a whole bunch of samples. I thought that was rather nice of him! I'm hoping they'll help some!

After my appt, I went to Michael's to look at the bead section. Yes, beads again! lol I was good and after having a handful of beads, I put several of them back and only bought three strands. I also found some letter charms to add to 2 of my bracelets, so I was happy about that! I started wandering the rest of the store when my friend texted me that they were leaving for the Olive Garden, where I was going to meet them for dinner. So, I paid for my beads and charms, and headed to the restaurant which was less than 5 minutes away!

My friends and I sat down to eat when we all arrived, and not even 5 minutes after that, it started to downpour! We knew the bad weather was coming, but we just weren't sure when. We made sure that we took our time eating so we wouldn't have to head back out there too soon! By the time we enjoyed our meal, and dessert, the rain wasn't that intense. I was glad for that, but I still really hate driving on rainy nights. My eyes don't like it too much, and I feel sometimes as if I can't see very well. I took my time driving back home, and by the time I got back, I felt rather tense! So I took a nice bath, and then played online for the rest of the evening. Now it's off to bed, but before I go, I have to say that if I hadn't known any better, I could've sworn I saw Euan tonight as we were leaving the restaurant. A guy sitting at a table next to us looked so much like Euan that I froze for a split second and had to keep from saying his name. I kept moving on, but it made me miss Euan all over again. I still wish so much he was still here.

Sunday, October 24, 2010


A person very dear to me has had diabetes for decades, and I worry about this person when I know they aren't eating right or doing the things they should to keep themselves healthy. Last week this person found out that glucose was in a place where it shouldn't be, and I just tonight found out that when that happens a lot, the kidneys can begin to fail. I had no idea. It causes even more worry.

This person told me that one of the biggest ways to keep glucose down, besides eating right, is exercise. I know this person isn't getting it. I completely understand how hard it is to just make the decision and start exercising every day, or at least several times a week. If I weren't going to pulmonary rehab, I wouldn't be working out because I just can't seem to stick to a routine at home. And so I do realize that it's hard to just start an exercising regimen, especially when you're on your own. I truly wish I could exercise with this person. Even just going for walks gets me a bit too tired, so that kinda defeats the purpose. This person's heart is in good shape right now, so the cardiologist has no reason to write a script for cardio rehab. That's too bad, since it might be nice if this person could join me at rehab! I just wish there was something I could do to get this person motivated and realizing how important it is to start doing something, SOMETHING, to improve their health through exercise. I just want them to feel better, and I know this is one step which is rather necessary.

Saturday, October 23, 2010

Breathing Hard & A Loss

This past week was a bit of a rough one for me breathing-wise. Not only the weather bugged me most of the week, but I also felt rather bloated for a few days, which caused me to be so short of breath that talking on the phone or to someone was a problem. Even just laying in bed was hard. It almost felt like the days of yore when I was growing up and not on meds to treat my pulmonary hypertension. It sucked, and it gets a bit depressing. I hate when I go through periods like this. It reels me back to wondering if the PH will actually worsen like that for real one day, and not for a brief interlude. I'm doing better now, thank goodness, but the days when I was really feeling crappy were very much downers. Sometimes it's just so very hard living with this disease.

I have met so many different people with PH both in the real world and the online world (funny how there are 2 separate worlds in my life now!). It's awesome when those 2 worlds collide together and you can actually talk in person to someone you got to know online who is going through much of what you're dealing with, too. Well, anyway, years ago a Mexican woman named Mariana came onto the boards. She posted with many questions, and we became phriends, chatting online or emailing often. She was such a sweet person! Many of my phriends were able to meet her at the PH Conference in Miami, FL. Her smile was so infectious! Eventually she told many of us she wanted to take a more holistic approach to her PH, and we all seemed to lose touch with her. At the beginning of this month, she posted on the PH board, and so many of us were happy to hear from her! This past Monday, she came into the chat room, and talked with us for a long time. She seemed in good spirits. She told us of a scratch she'd had for awhile that seemed to be leaking fluid, and we urged her to seek medical attention for that asap. She agreed and said she would do that the next day. Chat was winding down, and said her goodbyes and we told her to come back to chat any time. On Friday morning, I found out that she died. It was so shocking, and really upsetting. No one knows yet exactly what happened, and I am hoping to find out, but not sure if we'll really get an answer. I don't know if her PH was really bad, or if that scratch was really infected and got terribly worse? It's just so heartbreaking to know that in the beginning of the week she was with us chatting and laughing, and by the end of the week, she is gone. It's situations like this that make us really truly hate PH and declare it so unfair to anyone who has it. My thoughts and prayers are with her family, but this also makes me pray even harder for a cure!

Tuesday, October 19, 2010

Slow Cookin'

About a year or so ago, I got a crock pot for free from one of the survey sites I participate in. It was a rather large crock pot, but I enjoyed having it! I made lasagna, beef stew, macaroni and cheese, and a couple other things in there. Then in the spring or summer, I can't remember, Mandy's crock pot broke. She uses hers way more than I use mine, and since mine was family size, I asked her if she wanted it. She said sure, and she bought me a smaller crock pot. Since I got it, I've made a couple things I've never made before. I did beef stew again (because it's just so yummy!), but I've also made black bean soup. It turned out really good! Today I made boneless pork ribs for the first time ever. It turned out terrific! I had used a dry rub overnight on the pork first, and this morning I put the pork in the crock pot and covered it with a mixture of Jack Daniel's bbq sauce and apple cider. I had it on low for 8 hours. By the time I had dinner tonight, the pork fell apart as soon as I touched it with a fork! It was da bomb!! I'm excited about having pulled pork sandwiches later this week!! I have a couple more recipes I'd like to try in the crock pot, including a beef and barley soup, and chicken stew. I'm so glad to have the crock pot, because it's easy to use, and I don't have to worry about cooking in the evening for dinner. Plus, I have a lot of leftovers! It's great to stock up the freezer, especially during the winter! And one final note about crock pot cooking: one of the best things about having one? Your house smells soooooo good all day while whatever is in there is cooking! One of the drawbacks? Your house smells soooooooo good all day while whatever is in there is cooking! Makes you feel like eating all day long because your tummy is loving the smells! LOL

Monday, October 18, 2010

What The HECK Is That Noise???

For the past several nights, I've been hearing this noise in the house, and I couldn't quite figure out what it was. It's sort of like a rumbling noise, almost as if someone was running a sewing machine. At first I thought it was my fridge, but I kept going over to it and listening, and the sound wasn't coming from it. Tonight I opened my apartment door into the hallway and listened. Not coming from the basement. I crept up some of the stairs leading up to D's apartment. Hmmm, the sound was coming from there! Ok, so I knew the source. But what the heck was it???? She wasn't home, so I went back down to ponder and wait for her arrival so I could ask! As soon as I heard her turn the key in the door, I went back into the hallway. I asked her if she had something running upstairs, and she started apologizing. She said she had gotten 2 hamsters from someone, and they were running on a wheel. Oooooooooooooooh. Soooooo not what I was expecting to hear. But, at least I finally got the answer to what was driving me insane for several nights!!

Sunday, October 17, 2010

Eyes Wide Shut

On Thursday night, I was talking to a good phriend, and I had been telling her how I've run into some rather cute guys in the past week. The point I was trying to make was that I'm starting to look around again, even though I'm still not too sure how I feel about maybe trying to join the dating scene again. Part of the reason is that I still miss Euan a lot. It doesn't hurt as much as it did in the beginning when he died. In fact, usually when I think about him nowadays, it's because I heard something or remembered something that reminded me of him. Usually it makes me smile a little, or sometimes it makes me tear up a bit, but I haven't cried over him in a long time. Yesterday afternoon was a little different, though. I was in the middle of making a necklace, and I thought of Euan, and I suddenly had an overwhelming sense of panic because I realized he wasn't around to tell him anything. It was as if I was just realizing now, seven months later, that he was gone. I almost couldn't breathe. I have only felt like that a couple times, and the other time was a couple months after Mason had died. I can tell you that it's not a very comforting feeling. I eventually calmed down, but it was quite unbelievable knowing that my mind was having a hard time grasping the concept of loss for a few minutes.

Another reason I'm not sure if I'm ready to go out into the shark tank is because, well, I'm afraid. I don't really think I've had that much luck finding guys who actually want to deal with someone living with an illness. Many moons ago when I used to talk to men online (something I haven't done in ages), everything would seem fine and dandy until I'd tell them about my health. Some of them would be curious, some wouldn't even stick around. I've had dates that were just one time deals, and then I'd never hear from them again. I mean, I know that happens to all of us. As much as I'm secure about going out in public with oxygen and not caring anymore what people think, I totally don't feel that way about dating. I guess I just don't want to go through 100 frogs to find someone decent again. It gets a little depressing knowing someone doesn't want to date you because you have a tube up your nose, or you get tired from just doing a household chore (because gosh, if you can't change the bedding b/c it gets you so darn tired, how do you deal with sex?? No, seriously, I've been asked that). When it happens over and over and over, well it's no wonder that I've stayed single all this time. So, I guess what I'll just do for now is keep my eyes open. I know there are opportunities out there, I just have to be willing and able to find them (when I'm ready).

Wednesday, October 13, 2010

33 Miracles

For 69 days, 33 Chilean miners were trapped in a mine. No one knew if any of them had survived until almost 3 weeks after the mine collapsed. First predictions thought the miners may not even be out of the there until Christmas. There were 3 teams working on 3 different plans of action to get the miners out of there. People from all over the world were helping out. A small city formed by the families of the trapped miners, and they refused to leave until every single miner was freed. A few days ago, one of the plans to get the men out was finalized. Last night, rescuers were sent down in a capsule called Phoenix, and the slow beginning to freeing the men was started. More predictions thought it might take up to 36 hours. Rescue operations ended in about 24 hours, much faster than had been predicted. Everything went so smoothly, it was almost unbelievable! Last night, I watched the beginning of the rescue efforts. I finally went to bed after the third man got to the top. It was so emotional watching every single rescue, seeing the faces of their loved ones as they got out of the capsule and onto the ground. By the time I got up this morning, 13 men had been rescued. I ended up having live streaming video on my laptop all day, doing things in between rescues. I just didn't want to miss all the emotion, and the fact that this was definitely an historic event, not only for Chile, but for the world! I am so happy that all the rescues were successful, the 6 rescuers who went down into the mine are now all back up onto solid ground, and that no one is injured or has major illnesses. This has truly been a miraculous event, and it was a huge piece of good news that the world has needed for awhile now!

A Pill Anniversary

My life changed on October 12, 2003. That was the day I began a medicine to treat my pulmonary hypertension. I was 28 at that time. The only medicine I had been on since I was a small child was digoxin, for my heart. I continue to take that medicine, but now I am also on 2 meds to treat symptoms of PH. Tracleer was the very first one I started taking. It is a pill taken twice a day, 12 hours apart. It took a couple of months before I finally realized how much it was helping me, especially with shortness of breath. When I first realized I was not so tired going from the house to the garage, I cried. I couldn't believe it, I wasn't as short of breath as I had been growing up! Some people think it's nuts that I've remembered the day I started a pill. I don't. I remember that day because it drastically changed my life. I am so thankful for 7 years on this med, and I can only hope and pray for so many more years to come.

Sunday, October 10, 2010

Goodbye London

My upstairs neighbor kept a bird named London in the backyard. London was a racing pigeon. She originally came from London, Ontario. Her first and only race, she broke her wing. Somehow D. acquired her, and has been taking care of her for several years. London was kept in a large carrier, and D. would change the paper in the carrier, and the food and water, pretty much every day. Many times, London would wander around the yard, picking at things, but she'd usually end up back near her carrier. Several times this summer, I'd find London out back there by herself, and D. would be upstairs in her apartment for maybe 5-10 minutes before she came back down. I was a little concerned about that, because I was afraid that London might be taken by someone or would just run away (since she couldn't fly!). But, D. would come back down and London would be ok, and then put back into her little home.

Today, London was attacked and killed by a roaming cat while D. was upstairs. I was in my kitchen making dinner when I heard the dogs next door barking. I also heard D. start sobbing hysterically. I thought maybe she was upset about a puppy they had to put down at work today (she works in a vet clinic), but 2 minutes later, she came back into the house and called my name. I opened my door and there she was standing with London wrapped in newspaper, blood everywhere. She told me a cat had killed London, and that it was all her fault because she had left her outside by herself. I felt just horrible. D. went back outside, and a bit later I went out there to ask if there was anything I could do, but she said no. I told her I would miss saying hello to London when I'd go into the garage. I did a little attached to her, too. It's hard losing a pet, but even harder when it's a tragic ending. My only hope was that London didn't suffer from the attack. Poor little bird.

(By the way, I saw that black and white cat who killed London later on, wandering around my front yard. D. had seen the cat right before she found London. I wanted to go outside and scare it away, but it took off. Honestly, I feel sad that the cat doesn't have a home and has to wander the neighborhood. I hope that it doesn't meet a tragic demise, either.)

Thursday, October 07, 2010

Pajama Day!

I got up after hearing my phone in the kitchen this morning. I thought it was Mandy, so I sprung out of bed in mid-dream. I felt rather dazed. I didn't rush to answer the phone, but I at least got myself out of bed. After getting my contacts in and stuff, I went to the phone and found out it was Rite Aid calling me about one of my meds again. I hate the stupid reminder phone call. I don't even know how I got signed up for it! There isn't any way online that I can see to cancel it, so I guess I'll ask at the pharmacy tomorrow. Irritating!

I got Mittens his breakfast, and I went to wash my face. I felt so nice and warm for once in my pjs, so I decided that today would be Pajama Day. It's not that I wasn't feeling sick or tired or anything, I honestly just didn't want to get dressed. lol Although I have places to go, I thought I'd just leave it for tomorrow. So, I had breakfast, and spent way too much time online before I finally decided to go work on a few jewelry-related things. I had to resize a couple PH bracelets for 2 ladies who were at the meeting on Saturday. I also remade a Medic Alert bracelet for myself. And then I set up a triple illusion necklace set with these gorgeous fall colored beads. They are black-dark brown-red-orangey round beads, and I just think they are so nice! Hopefully I will have some time to work on it fully soon!

Right before Mittens and I got in a nap, I found out of from a phriend that a phriend of ours had received her call for lungs! SW was headed to the hospital, in Texas, and I prayed for 20 minutes that this call would be for real. Anyone on a transplant list can be called and then find out later that it was a false alarm. SW already had one of those calls over a month or so ago, so I was really hoping it wasn't going to happen again. As far as I know right now, about 8 hours later, the surgery is a go! I hope to hear in the morning how the surgery is going. It can take a long time to get through that surgery. I'm praying that everything goes off without a hitch!

I got up from my nap to make dinner, and then I watched tv and hosted PHA chat for the evening. I also chatted with a couple friends online. I don't know what I'd do without the internet. I truly think I would be lost and very much feeling as if I was alone. I'm so thankful it is out there, even if it makes me procrastinate on things I should be doing. lol I'm just glad I've been able to connect with so many people, especially those also living and dealing with PH.

On that note, it's time to get to bed! I have pulmonary rehab in the morning, and then I'd like to go shopping to get things I need for the month, and to just browse. The weather is supposed to be pretty nice for once, and not so dreary. Much better for me than having to be out in chilly weather!

Tuesday, October 05, 2010

Eyes To The World

When I saw my eye doctor last month, he wanted me to see a retina specialist. The past couple of years he's been a little concerned with my eyes, especially the left one. I'm currently waiting for my sister to pick me up so I can go to my appointment. I'd lie if I said I wasn't nervous. I am hoping that it isn't as bad as my eye doc was thinking, and that'll they'll continue to keep an "eye" on it (haha). But, I really don't want anything like retina detachment to occur! That would be just horrible!

I used to wonder which I would miss more, my eyesight or my hearing. I always said that I would totally be heartbroken if I could no longer listen to music. But now that I'm facing a possible eye problem, I realize just how important it is to see. Of course, I should consider myself lucky that I can see and hear pretty good, because there are so many who can't. Anyway, I'm worrying myself again! I won't know anything for sure until I see (haha) this new doctor!!

*UPDATE* I can't see at all because my pupils are so dilated and my eyes are so dry, but the eye specialist said she saw nothing wrong with my retinas. Yay!! She thinks maybe because I am so near-sighted, that my doctor was seeing something that wasn't really there. I don't know, I'm just glad I don't have any issues right now! I must go lay down and hope to heck my vision improves once I get up. Don't ask me how I'm typing. It's all a big blur. lol If there are errors, I'm sorry. lol

Sunday, October 03, 2010

A Very Busy Saturday

I got to bed on Friday night and felt better about the meeting the next day, since I had pretty much gotten everything together. Saturday I woke up at 7am to take Revatio, and for whatever reason, the next 2 hours went by so slowly. I wanted to get another 2 hours of sleep, and I'm not sure I ever really did. So I finally got up at 9 and got myself ready to go. Joan picked me up at 11am so we could get the food first. Wow, they kept bringing out boxes of stuff! It all smelled sooooo delicious when we got back in the car. We headed to the hospital with no problems. Joan pulled up to the front of the hospital, and we both went in to get some wheelchairs, since it was the only way we could get the food in the room. A big shoutout goes to the security guard working on Saturday, because he had to unlock the room, and he brought one wheelchair up there for us! Yay, M!! Joan and I got the other 2 up into the room, and Joan started setting up the food while I set up my stuff. My doctor showed up, and I introduced him to Joan. He began a mission of finding some cable thing that he needed in order to use the projector in the room with his netbook that had slides he wanted to use. Luckily he found one at the nurses' station! Slowly other PHers and their family/friends started coming in, and I did get to greet all of them. I eventually started the meeting by announcing who sponsored the lunch, and we enjoyed the food! About half an hour later, I introduced Dr. G, and he began his talk about lung transplantation, and everything that goes with it. It was a very informative talk, he surely knows his stuff!! People did ask him questions, he asked us questions, and I thought it all went very well. When he was done and no more questions were asked, I started doing the Blue Lips campaign. Another PHer asked if she could help, and suddenly the entire task was taken over, and I was being asked by a few other people about my jewelry. Before I knew it, most of the people were gone and Joan was just waiting for me to finish packing up my things since she had already taken care of the leftover food. The end of the meeting was just so chaotic!! I didn't even get to say goodbye to some people, and I felt bad! But other than that, I really thought it went well, and despite all my nervousness, I'm looking forward to the meeting in May!

Joan and I got the food back downstairs in the wheelchairs (Joan had to make an extra trip for the third one), packed her car up, and took off for home and much needed naps! Eve called me before I even got in the door, so I talked with her while I was putting away my stuff. I tried taking a nap with Mittens, but I started getting a bad headache. I ended up just laying down and just taking it easy. I called Dee and talked to her for awhile, which was nice! Then I had to get up and get ready to go to Mandy's house for leftovers with the family, including my Grandma, aunt and cousin who had his son. My dad picked me up, and we got over there. It was a very nice evening! I even got my family to do the Blue Lips campaign, although the guys refused to let anyone see their lips blue, so they took the lipstick, the paper they had to kiss, and kleenex to wipe their lips off into the bathroom so none of us could see. lol Hey, whatever, at least they did it!! I left with my dad around 9:30, and just took it easy until it was bedtime. It was definitely a very long day, but it went so much better than I was thinking. Sometimes I wish I could just turn off my brain so I won't overthink things and stress myself out!!

On top of everything going on yesterday, it was Mittens 10th birthday! I can't believe he's 10 years old! It makes me feel old! lol He enjoyed his day by napping, sleeping, napping with Mommy, eating, playing in a box, napping some more, and ended up playing for the last hour before I went to bed with various toys. We even played hide and seek right before I went to bed, at 1 in the morning!! So, I guess I would have to say that he enjoyed his special day!

Friday, October 01, 2010

Oxygen Confusion

I've been on oxygen for over 8 years now. Although, when I first started wearing it full time I was very sporadic with it when I'd go out in public (wear it to the restaurant/movie theater/someone's house, etc, then take it off before going in). Over the years, and especially the last couple, I just don't care anymore if I have it on. I know I need it, and I know it's helping.

So, since I wear my o2 so much now, my niece and nephew here in town have mostly seen me with it on. They tried to pull it off my face when they were babies. They've asked questions about it. I caught my nephew trying on my cannula one day (of course, I took it off to answer a phone call in another room when I was babysitting him...what did I think a curious 2yr old at the time would do??). I had a sniffing war with my niece when she was about 4 one day while I was over. She heard the puff sound from the bottle when I breathed in, so she was trying to copy it by sniffing in hard. So I would do it again, and we went back and forth for 5 minutes, both of us laughing our heads off as we tried to over-sniff each other. I have told them that I need to wear the oxygen to help me breathe better. They sorta get it. But yesterday was cute when I watched my nephew for about 20 minutes while Mandy went to pick up H. from school. As he sat there eating a muffin, he pointed to my cannula and told me he wanted one of them to breathe. I said he didn't need one, and he said that he did, because he couldn't breathe good. He was so serious about it, too. So, I just told him that the only way he could get one was to go see his doctor and ask. Well, that made him change his mind. He just looked at me and said, naaaaaa, and continued to eat his muffin. I just thought it was too cute and funny! lol

Busy Weekend

I have been planning for my upcoming PH support group meeting for over a month now, but crunch time is here, since the meeting is tomorrow. Although things are almost set, I feel like I have nothing done. The food has been ordered, the guest speaker is squared away. He is my PH doctor from the Cleveland Clinic, and he will be talking about lung transplant. I have my PH bracelets all in a bag, since a few members asked me about them again. I have all the stuff for the Pucker Up 4 PH campaign, including the blue lipstick mixed with Vaseline so it'll go on lips better! I started a bag of extra stuff to bring in case of leftovers (which is ALWAYS the case). I have a list of things I need to mention during the meeting, I just need to print it out. I can't think of anything else I need to do, but I'm still stressed out about everything!! I hate that I get this way. I'm looking forward to the meeting, but it's going to go in a flash and be done before I know it. Then I'll go through it all again for the next meeting in the spring!

Besides the meeting, I found out that I have some family coming into town for the weekend. While it'll be nice to see them, it is so not my main focus until I get home Saturday afternoon from the meeting. I'll probably see them tonight, maybe for dinner, but I'm just trying to take it easy so I have enough rest for tomorrow!

Monday, September 27, 2010

Great Weekend, Crappy Monday

Today was a crappy day. I tried to seek positivity in the morning when I got up, but since I didn't feel good from the get-go, that effort went down the drain pretty quick. It was kind of hard to take considering I had a really good weekend. So, I'll just focus on that instead!

Saturday I set out to do some things around the house that I needed to get done. Once the music hit my ears, it seemed that everything was pretty easy to do. I washed some sheets, put them in the dryer and then eventually folded them and put them away. I washed the dishes, and cleaned out the microwave. I finally got rid of the tomato plant on the front porch (there were still 2 tomatoes growing, but they are in a brown bag...maybe they'll ripen and be ok to eat!), and the dead flowers in the big pot on the porch, too. Then I went around to the back and ripped out the tomato plants that never even produced anything. Next year, I will know not to start seeds from scratch, I guess. I took a little nap, made dinner, and then watched my Netflix movie, and then chatted with phriends online until I made it to bed.

Sunday was a rather chilly day, making the apartment chilly. Someone on Facebook said something about their oven, which then inspired me to bake! I made brownies, and then chocolate chip banana muffins. And since I was on a roll, I finally decided to try making homemade hummus. I am so proud of myself, because it is GOOD!! I plan on making it from now on, it was really easy! After cleaning up from that, there wasn't really time to take a nap since I had to make dinner. I did that, and worked on a Medic Alert bracelet for someone. Then I organized some PH awareness bracelets that I want to bring to my support group meeting on Saturday. After that, it was lots of tv time! I relaxed on the couch with Mittens, and it was a very nice evening!

The 2 days were just so good. I was in a great mood, I was feeling good for the most part (some shortness of breath while doing things, but not horrible). I didn't have to take any pain meds since I wasn't in pain and had no headaches! It almost felt like the other shoe was about to drop, and I guess it did today since I just didn't feel good, and the day was lousy. But, I suppose that happens sometimes. Here's hoping the rest of the week is better. I'm still trying to get ready for the meeting, and I have no time for feeling yucky!

Saturday, September 25, 2010

Four Eyes

I've been blind as a bat since the 3rd grade. Year after year, sometimes even a couple times a year, my eyes would get so bad that I'd need new lens. They got thicker and thicker the worse I got. I hate needing glasses, but there wasn't any way I could go without having them. The pair of glasses I had most were the huge green ones with lens thicker than the frames. They were horrible to say the least! Ten years ago was the last time I bought new frames. I was amazed at home much thinner the lenses were. I wore my glasses mostly at night, but I eventually became so dependent on contacts that I'd wear them from the time I got up to the time I went to bed, usually making that about 15 hours a day. Not exactly the best for my eyes! Since the glasses I had were so old, I could only wear them right before bed, if I decided I was going to read for a bit. So, I finally decided several months ago that I'd save up money to buy new frames. I really didn't like the ones I had anymore anyway. I went last week (on my birthday) to my eye doc, and after he told me my eyes were about the same (for the 3rd year in a row!), and that he could even bump me down a notch in prescription (gasp!! really?? sweet!), I went out to look at some frames. I had told my doctor that I had a budget, and I wanted to buy contacts as well as glasses. He said they'd work with me since he didn't want me going anywhere else for cheaper frames. How nice! Anyway, I was down to 2 pair of frames, and with the help of my doctor, the guy helping me pick out frames, and 2 other women who worked there, we all decided on the frames I ended up buying!

I picked up my new glasses on Thursday. They were fitted to my face, but I still had my contacts on. So I didn't really get to try them on and see how they fit until I got home, and put them on around 9pm that evening. Wooooooow, they made me feel funny. Since my eyes are used to be entirely covered with a contact lens that allows me to see anywhere I look since it moves with my eyeball, wearing glasses and trying to look around sure was going to take something getting used to! I had the glasses on until I went to bed around 12:30am. It wasn't too bad, but I knew this was going to take some time before my eyes were going to adjust to the glasses!

Yesterday afternoon, I took out my contacts and took a nap for a bit before going to my parents for dinner. When I woke up around 5pm, I put the glasses on. I went to my parents and stayed there for a few hours. By the time I got home, I was feeling pretty icky! I tried putting my contacts back on, and it wasn't any better. So, I laid down in the dark living room for about half an hour with my eyes closed. After that, I felt ok. But, I have decided that I need to do small increments of wearing my glasses at night before bed. Perhaps tonight I'll put them on an hour before bed. Then maybe I'll do that for a few days before I put them on like an hour and 15 minutes before bed, and so on. It's almost like exercising, adding small increments at a time to what I do in my workout. Hopefully that will work, because I really like my glasses, and I would like to wear them a bit more often!

Monday, September 20, 2010

Sunny Monday

My birthday weekend was rather nice. I spent time Friday night with my family, going to a Chinese buffet for a yummy dinner, and then having cake at my sister's house. One of my fav parts of the night was helping my 5yr old niece pick out food to eat, or try. When she saw the bin of clams, she exclaimed very loudly, "Clams?? I LOVE clams!!" She was so giddy about it! A woman across the buffet from us laughed and told me how cute my niece was! She is pretty cute, I do agree!

Saturday I cleaned the bathroom, but tried not to exert myself too much so I could enjoy the evening with my friends. We had Game Night! We didn't seem to play too many games, though, but we did talk quite a bit. Adult Mad Libs was a hit, and hysterical, and I got 5 strikes in a row on Wii bowling! I could never do that in real life! My friends gave me beautiful gifts, and I loved them all. I must find places to put them now!

I spent Sunday just resting and playing Facebook games. I still have an addiction to Cafe World and Farm Town. Oh well, it gives me something to do if I want to take it easy. I watched a Netflix movie in the evening, The Magdalene Sisters. It was alright. I seem to be into the Indie films lately, this is the 3rd one I've watched. I have a few more movies left in my Netflix queue, and then I think I will suspend my account for now. With the new TV season here, I don't think I'll be able to watch as many movies as I have this summer.

Today is beautiful, albeit chilly (for me anyway). The sun has been out, and when it was coming in through the bathroom window this morning, Mittens wanted to sit in the windowsill. So, I opened the window, and there he sat. I had to leave for bloodwork, and he meowed when he saw me outside of the house as he sat in the window. After getting poked 3 times (grrrr), I went to the credit union and came back home two hours later. Guess who was still in the window??? I was surprised to see Mittens still there, because he doesn't usually stay there that long! He meowed like crazy when he saw me, and when I finally got into the house, there he was at the door, greeting me. He's just too cute!!

While I was waiting to be told I could go home after I got my bloodwork taken (my blood is thick and stupid, and years ago, the lab had to come up with a procedure to draw my blood differently since it would clot before anyone could even test it), I saw a lab tech who also has a daughter that draws blood. The last time I had gotten my blood drawn, the daughter did it, and as we were talking, she told me how her asthma was so terrible, and none of the inhalers she'd ever been given worked. My ears went up after I heard that. I started talking to her about pulmonary hypertension, and asked her how she felt doing any little thing, like walking up stairs or down a hall, or even getting dressed. She is so short of breath doing all those things. Well, I gave her the green PH Association card, and also my business card, and told her to call me if she wanted names of doctors in this area who treat PH. I hadn't heard from her, and so I talked to her mom today when I saw her. I gave another business card to her mom, and she told me she'll definitely get her daughter to call me. Obviously, I hope she doesn't have PH, but she sure shouldn't drag her feet finding out since this disease can be so vicious if treatment isn't given asap! I'm hoping to hear from either one of them soon!

Well, it's naptime. Wish I didn't need naps, but I sure wouldn't make it through a day without one!