Monday, October 31, 2005

Halloween Back In The Day!

I had this picture on my computer for something I did a few years ago. I am assuming this was taken when I was maybe 8 or 9. I'm in the middle with my sisters surrounding me. Aren't we cute??

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Way too cute - and great costumes! Comment from fitzzer - 11/5/05 2:01 PM

awwww! Such cuties. :) Thanks for sharing, my friend. Comment from anglswinks - 10/31/05 12:40 PM

Happy Halloween!

Halloween has always been one of my favorite holidays! When I was little, I just wanted all the candy and the party at school. When I got a little older, the candy was still nice to have, but then I wanted to have an awesome costume! That worked out for the most part. Sadly, though, in order to go trick-or-treating, I had to wear long underwear or a coat over my costume because it usually was so cold to go without. What a bummer, no one could see what I was! lol Nowadays, I love to see the kids coming around with their costumes, especially the little ones! They are soooo cute!!

Speaking of little ones, my niece is going to be a yellow flower! I can't wait to see her! Mandy is going to take her around in a little while. And today, the weather is pretty nice for once. That probably means I'll get a lot of trick-or-treaters, and I'll run out of candy quick! lol Enjoy the day, all!

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Boo! Comment from luvmort - 11/1/05 12:03 AM

Thursday, October 27, 2005

The Mysterious Woman

It's been several months since I had to get a phone number for my house so I could use the internet. Ever since I've had the number I was given, I've gotten a ton of calls for the woman who must have had it before me. All I'd like to know is where in the world is Darlene Destino????????

You would think someone would give you their new number when they get it. Darlene either forgot to do so, or she has vanished from the planet. I get calls from telemarketers, and I have to tell them that she no longer uses the number. At least they don't try to sell me anything. Then I'd have to tell them that the number is on the Do Not Call Registry. At least I was smart to do that!

I get reminder calls from the Catholic Charities WIC program. After the fourth call from them the other night, I finally called today to let them know that I got Darlene's number. The woman was very apologetic about it, but it's not her fault! It's Darlene's! Now tell me something....if you are getting money to provide the basics for your young child, wouldn't you give the place providing you that money your new number so you could be reminded about appointments?? This is what makes me wonder about this woman. Did she take off with her child or something?? Hmmm.

Another thing that seems strange is that there have been people calling for her who sound like they are her friends, or at least know her well. And they are surprised she's not the one answering the phone. Helloooooo?? Wouldn't you tell people you know that you have a new number?? I just don't get it!
So, I say it again, where in the world is Darlene Destino?? Did she just change her number and forget to tell people? Did she suddenly disappear in the middle of the night so no one would know where she went? Is she in trouble with the law? Who knows the life of this woman?? I am curious, however, because I have gotten some pretty interesting phone calls. One of those times when I get a call for her, I'm going to ask that person a little about her! It's driving me nuts!! LOL

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We still get calls from whoever had our number 4 years ago!! What's up with these people? LOL Comment from fitzzer - 11/5/05 2:02 PM

I love you for this. It's a mystery and you are compelled to solve it. I am the same way. Next thing we'll know, you'll write a book "Finding Darlene: One Woman's Quest To Unsolve The Mystery Of The Forgotten Phone Number". Comment from luvmort - 10/28/05 1:00 PM

Tuesday, October 25, 2005

Clean Stuff And Some Disappointment On The Menu Today

So far today, I've gotten a lot accomplished. Mind you, my arms are still sore, but I'm trying to just shrug it off. And I guess it's working! I've washed the dishes. I've cleaned the entire bathroom. I've also done a big load of laundry AND hung all the clothes up to dry. I can't tell you the last time I hung up my undies because I didn't do it for years since my sister and her hubby were living upstairs. lol But that's all done! I even walked for 10 minutes. Perhaps that is why I had such an energy boost today. I was planning on just going back under the covers this morning, since it's so yucky, gloomy and rainy for the 4th day in a row. However, I've got a lot done! I think that's it for a while. I don't want to overdo it!

I got an email from someone I love dearly this morning. And it has disappointed me so much. I can't go into details here, but I have to say that I never thought she'd risk losing something so important to her by making the decisions she's making. It's quite obvious that the advice she so desparately wanted from me a while back went in one ear and out the other. I can only pray that her eyes will open suddenly, and she will realize she's making a big mistake.

Well, I guess I'm off to find something else to do. I think it might be some jewelry! Or maybe I'll go read Jaws. Yes, I decided to try reading the novel that caused such a sensation when it came out. Jaws is one of my favorite movies, and I was in my mom's womb when I "saw" it. It scared the crap out of her, but I just love watching it! lol Anyway, I'm off to do something! :)

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I remember everyone reading JAWS on the beach when it came out. Idiots. Comment from luvmort - 10/27/05 10:52 AM

Monday, October 24, 2005

Still In Pain, But Not As Much

My arms still hurt, but after 2 Tylenol arthritis, it is starting to subside. I'm hoping they will be much better tomorrow!

I told my doctor about my support group meeting today, and she told me she is so very proud of me. She said the support group gives me new purpose. She's so right. For the longest time, I've felt like, why am I here? I can't work, what am I supposed to be doing with my life? The support group is a new beginning for me, and it is so needed. The group is needed to bring people together. I need the group to know that I'm not so alone with PH, but to also give me the feeling that I'm accomplishing something. And so far, it's working. :)

I think I need to go to bed. It's so early, though, I'll end up waking at like 7am. I'm trying to hold off until at least midnight. I think the shots have made me sleepy! I sure hope they hold back the flu and pneumonia for the pain they've caused me today. lol Oh well, g'night!

I. Am. In. PAIN!!

I hurt. This entry will not be long because my upper forearms are killing me. I went to my doctor today for a checkup. Lo and behold, I needed both a flu shot AND a pneumonia vaccine. Lucky me!!
Her nurse put one shot in each arm. I can barely move my right arm without complaining. So, this entry must end at this moment.

Bring on the pain meds!!!

Sunday, October 23, 2005

Whew, Busy Weekend!

I had a very busy weekend, and although it was a lot of fun, I'm paying for it today. Friday was girls' night, and it was the best time! I had so much fun, and we laughed so hard that it bothered me the next day. Imagine that, even laughing can cause problems for me! But that sure doesn't mean I'm not going to laugh!
Last night was my friend's wedding. And it was fun, too! The food was good, the music sucked (the DJ was awful, I must make a mental note never to hire him for anything!), but we did dance! However, that threw me for a loop, too. I was quite tired by the end of the night. And today, I woke up very exhausted. I even have a little chest pain, which I know is because I've overdone it. However, I see my doctor tomorrow, and if I still have it, I will tell her about it.

I'd like to thank those who left such kind words in my last entry. My essay for the contest was a hard one to write, but the comments left make me realize that I do have many things that I CAN do. Thank you especially to my dearest sistore for making me feel so loved, and realizing that I have so much more to be thankful for. I love you so much. :)

Friday, October 21, 2005

The One Thing I Would Most Like You To Know About Me...

Our dearest Judi has asked us to write about what we would like someone to know about us. This is for the October Artsy Essay contest. I kept going back and forth on what I'd like people to know about me, and I finally have decided.

I was born with congenital heart disease (I have 2 holes in my heart), and a rare lung condition called pulmonary hypertension. Since doctors had no good answers for my parents on how to treat my condition when I was a baby, they were told that I might survive a year, or I might survive 50. They had no idea, but told my parents to prepare for the worst.

After reaching my 30th birthday last month, it is quite apparent to me that somehow I'm beating the odds. I grew up with a lot of limitations, and I still have many that I face as an adult. And while so many people have told me how strong I am, how unbelievable I am to brave everything I go to, my biggest secret is that I long terribly to have a normal life.

I wish so much that I was a normal person, in the physical sense. I know not everyone is "normal," but I wish I knew what it was like to do so many things that I just cannot do. I wish I could swim. I never learned because it would tire me out quickly, and I also had so many ear infections when I was younger. I wish I could swim in the ocean with dolphins and tropical fish. It is a wonder I love the ocean so much. I long to be there, to know what it feels like to hold my breath, take a dive, and see what is in the waters below.

I wish I could run. I long to just take off one day, running down the street, to no place in particular. I wish I could know what it feels like to do that, and not want to collapse afterward, so tired, my heart pumping so hard I feel like it's going to bust out of my chest. That is how I have felt most of my life, that any little thing I do, or big thing I attempt, leaves me and my heart and lungs in such distress that I almost feel like the end is near. It's a horrible feeling. Running is almost like a death sentence to me. Perhaps it is why I wish I could do it so much. To me, running is almost like a freedom. A freedom I will never know.

I wish I could work again. It's been over 5 years since I had to quite my preschool teaching job, and while I am better after doing that, I long to teach again. I miss the environment, I miss the children. I miss being looked up to by little ones, I wish I could see their faces when they were learning something new. The physical demands on me every day wore me down, though, and I know I could never go back into that environment again.

Perhaps the biggest wish I have felt and longed for lately is having a baby. It is not possible for me to physically go through. And yet, even if one day I adopted, just holding the baby or carrying all the things needed when going out is impossible. Wanting a child is the biggest heartache I have. When my sister and my best friend were both pregnant this past year, it made me realize even more how much I cannot have a baby. I cried almost every night, wishing I could hold and love a child the way a mother can. The fear of never being a mom is something that tears my heart out.

Being normal in the physical sense is something I don't ever really discuss with anyone. I almost feel like it's a silly dream, perhaps something most people don't want to hear about. But it's very real to me, and I keep it to myself. I don't want people to hear the pain I feel when I know I can't do the things I really wish I could do. It is not easy living with a disease that limits your everyday life. It breaks your heart when you cannot do what others around you can.

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One of my favorite prayers: "God grant me the grace of a normal day."http://journals.aol.com/oceanmrc/MidlifeMatters/ Comment from oceanmrc - 11/5/05 1:18 PM

What a moving entry this is. Physically you may not have the "normalcy" you desperately wish to have. But emotionally, you are far above normal. Keep on dreaming and hoping...there are always new developments in the medical field. And I will hope the researchers and scientists will find the perfect treatment to enable you to do all you wish to do!http://journals.aol.com/bedazzzled1/Bedazzled/Comment from bedazzzled1 - 11/1/05 3:56 PM

Oh, my sister. I've known that you have wanted to do all these things for awhile now. But just because you are unable to do them, just remember that God has blessed you in many other ways to make your life as fulfilling as it can be. Your other gifts are a blessing to everyone in your life and even though you feel left out on the things you are unable to do, remember that we all love you for who you are and can not imagine you not being present in our lives. I love you so much. :* Comment from balonie24 - 10/23/05 7:24 PM

I think we all can relate to this desire to be normal, for in being "normal" we find acceptance and love. It is scary to be "out there," to be different. But different has its advantages, too. And sometimes, when you dare to be "different," you find people who are "different" in the same ways as you. Then the differentness becomes...normal! My best wishes to you on your journey. http://journals.aol.com/theresarrt7/TheresaWilliams-author/ Comment from theresarrt7 - 10/22/05 6:30 PM

Oh Dear lady......... I wish that you could have these simple things too. I am honored that you wrote these words down and shared them, this is a very important secret to share.warm hugs to you,judi Comment from judithheartsong - 10/22/05 2:37 PM

it is crushing when such a deep desire is forever to be left outside our grasp. I pray you may find peace. I know things like this lurk in the darkness of our souls and only creep out when we allow them to. Thank you for sharing your heart so beautifully http://journals.aol.com/pixiedustnme/Inmyopinion/entries/1304 Comment from pixiedustnme - 10/21/05 9:31 PM

Oh, my heart broke for you with the comment about having a baby. I went through years of infertility. Don't give up on that dream. There are women who are completely paralyzed who have children!http://journals.aol.com/hestiahomeschool/HomeschoolingJournal/ Comment from hestiahomeschool - 10/21/05 9:17 PM

I understand. I really, really do. Christinahttp://journals.aol.com/ckays1967/myjourneywithMS/Comment from ckays1967 - 10/21/05 7:23 PM

Sunday, October 16, 2005

My Support Group Meeting Was...

AWESOME!!!

I had to admit I was so nervous yesterday morning trying to get ready to go to the hospital for my meeting. I was worried about getting there, I was worried about where to park, how to find the room, what the heck to say, etc, etc. But everything went smoothly! I didn't get lost going there (thanks to Mapquest, surprising, huh, Mort?? hehe). The lot where I parked was right across the doors from where the auditorium was located. What luck that was, since we had quit a bit of things to carry! And by the time the meeting started, I just told me story, and things flowed from there! Everyone told their story, and asked so many questions, that I didn't even have to direct the conversation! The 2 hours were gone so fast, I bet we could have been there for a longer time. I can't wait until I start planning for the next meeting, which might be late January or in February. I'm going to look for a guest speaker, as soon as I figure out a topic!

By the way, there were 5 PH patients who attended, 1 family member, and a representative from Accredo. Oh yes, and of course my mom and I. Sadly, the girl and her father that I talked about in my last entry didn't make it. I'm not sure why, either. Maybe she really didn't want to come, or maybe she wasn't feeling well to make the drive. I'm hoping that maybe she can come the next time!

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That's great - I'm glad to hear it all went well. Comment from fitzzer - 10/19/05 11:09 AM

Good to hear. Comment from luvmort - 10/18/05 7:11 PM

Friday, October 14, 2005

Overwhelmed

I received a call just about 20 minutes ago from a father who is bringing his daughter to the support group meeting tomorrow. He was trying to get the address of the hospital so he could look it up on Mapquest. He told me that this support group has come at the right time for his daughter, because she feels like giving up. She is 23. Her father told me he is so grateful that I'm having this, and that he looks forward to tomorrow. I immediately had tears in my eyes. I believe all of us PHers have felt that same way at some point, like giving up. I'd be lying if I said I haven't had that thought now and then. I am so glad I'm doing this. I feel so overwhelmed already with care for the people I'm about to meet tomorrow. I am glad God pointed me in the right direction when I was making a decision about whether to start this or not. This will be a good thing, a very good thing.

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You are doing such a wonderful thing in providing a support group and letting others now about this as well. Comment from fitzzer - 10/19/05 11:09 AM

Great that she is going to get help. Sad that she is using Mapquest. I have gotten so lost with that infernal thing. Comment from luvmort - 10/14/05 7:15 PM

What Support!

Wednesday was the last day to RSVP for my support group meeting on Saturday. I got 2 calls today, which was fine! So right now I have a total of 10 people listed as coming. This would include 7 PH patients, and 3 family members. This is not including my mom and I. A representative from Accredo is also coming. I have yet to hear from my PH specialist. I've emailed him twice, but no response. That's ok, though. I honestly never expected him to even suggest coming, and it's understandable if he doesn't want to drive the 3 hours to get here! So maybe next time!

I'm so looking forward to this meeting. A part of me is very nervous. I'm not a person who likes to get up in front of a crowd and just talk away. So this is a different venue for me, but I think it will be good. I wanted to meet other people going through what I've experienced. And this is what is happening! It's exciting and nerve-wracking, all rolled into one. I'll be surprised if I even eat breakfast Saturday morning. Or lunch for that matter. I'm sure I'll have butterflies in my stomach!

Not too much has been going on, other than getting things ready for the support group. I went for coffee last night with my friends, and we had a great time. We're having a girls night next Friday, and I'm looking forward to that, too! I also have a wedding to go to next Saturday. I really need to get a gift for them, since I don't have cash to write them a check. Gotta love the plastic. lol I gave all my jewelry to my friend, Michelle, so she could try selling some at her place of work. She sold one set already, and that was to her niece! I hope she can sell alot for me, I'll be so thankful!

I picked up my treadmill Sunday at my friend's house. My dad drove his truck there, and my friend's hubby helped him put it in the flatbed. It is still there. There's no way my dad can move that thing by himself, and I'd shoot him if he tried! He's waiting until someone from work is available to help him move it into my computer room. I thought it was going to happen today, but then my dad called to say the one guy couldn't make it. Oh well, ittook me a year to pick up the treadmill, I can wait a few more days. lol

Off to bed I go! I have lots to do tomorrow for the meeting! G'night, all. :)

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I'm probably a little late, but I often find really great gifts & deals on Crate & Barrel's outlet store on the web. Comment from fitzzer - 10/19/05 11:11 AM

Friday, October 07, 2005

A Little Trip To Cleveland And Some Support Group Joys!

I went to Cleveland Tuesday/Wednesday for a checkup with my PH specialist at the Cleveland Clinic. I mentioned before that I had been worried about going, and that I usually get that way before I go (see THIS if you want to catch up). I'm always worried about going to the doctors! Anyhow, I freaked out for nothing. Yet again! I actually had a pretty good walk, despite feeling like crap that morning. And it wasn't because of my cold. That has pretty much disappeared. But for some reason, I felt a little carsick on the way to the Clinic that morning. And then, the elevator to the 9th floor where the Pulmonolgy department is made me want to hurl. It always does. It's THE worst elevator I've ever been on!! Anyway, back to the walk. I didn't walk as far as the last time (1200 ft v. 1300 ft from May), but I felt a lot better than before. And my oxygen levels were better, too! Instead of dropping to 49% like last time, they dropped to 59%! That's an improvement! Now, if I were a NORMAL person, those numbers would be absolutely horrible. You might as well be comatose or almost dead with oxygen levels that low. However, I am NOT normal! At least when it comes to health, I'm not normal. lol So to make a long story short, my tests went well, and there are no changes to my therapy! Yay!!

Now, as for my support group meeting. Flyers went out last week, and I got my first RSVP on Monday! One person is coming!! And she is bringing her daughter! I was thrilled, I tell ya!! Well, my next big surprise about my support group meeting was the fact that my own PH doctor told me Wednesday that he'd like to come! I couldn't believe it! He'd drive 3 hours for a 2 hour meeting? That's what we asked him (my parents and I), and he said sure! He said his wife would be out of town, so he'd be able to make a trip. I'm holding my breath on it (not literally, that would be bad!), just in case he can't make it. I really hope he can, so we'll see! That would be awesome, though!

When I got home from Cleveland, I had a message from another woman RSVPing for the meeting. And today, I had a guy who left a message saying he might attend. Plus, tonight, I got an email from a woman who said she's coming! I am beyond elated that there are 5 people showing up so far! I am so looking forward to this meeting next Saturday. I think this was one of the best decisions I've made, to start this group. I had only hoped to meet one person with PH, and now it looks like I'll at least be meeting five! I only hope that more will show, whether they RSVP, or just show up. And maybe more will be willing to come in the future!
I have a low-key weekend planned. My big excitement might just be getting my friend's treadmill on Sunday. She offered it to me like a year ago. At first I had no room for it because my sister's was in the basement. But then after they moved, I just hadn't had the time to get it. And I kept forgetting. But now, I can get it, and I'm excited about it! I haven't exercised all summer. And that is horrible, considering last summer I exercised so much for the first time in my life! I had muscles everywhere! I was impressed with myself! Now I'm ashamed, and I'm ready to get back into shape, no matter how long it takes me!

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I'm so happy your tests came back ok! WTG on your RSVP's and meetings. That's great too. In no time I'm sure you'll have lots of people joining you. WTG! ~ Lori Comment from fitzzer - 10/8/05 11:04 AM

Monday, October 03, 2005

Sometimes I Just Don't Understand

I just had an interesting conversation with Pat, the brother of Tom, who I surely thought I was in love with for years. And I told Tom how I felt last summer, and he basically shut me down. I've gotten over that, for the most part. I can't lie and say there aren't days when I don't miss him, because I do. It's just not as hard as it was before.

Anyhow, while chatting with Pat, he brings up his brother, and he's saying some not-so-nice things about him. He starts telling me Tom's dating some chick who is a witch (substitute a certain letter), and another name which I shall not mention. Well, several names he called her, but they not publishable, so you get the drift. I wasn't too surprised by this, as he's said this about a couple other girls Tom's been with. However, I was very taken aback when Pat told me that this chick treats Tom like crap and IS STILL MARRIED!!! I can't believe Tom would stoop so low as to go out with a married woman. It was just shocking to me to hear this. But then, I told Pat that I had told Tom how I felt about him last summer, and that Tom just pretty much blew off what could have been a good thing. Well, I'm just going to relish Pat's comment: Tom's not good enough for me. Ain't that the truth! It's apparent that I'm not Tom's type.

I'm not married, for one thing.

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Men make no sense. Sometimes I think for some reason they just don't know how to appreciate a good thing. I know it hurts, but sometimes things happen for a reason. I'm thinking it's just that there's another guy out there that's just perfect for you and maybe you just haven't met him yet! ((hugs)) ~ L Comment from fitzzer - 10/4/05 8:39 AM

Sunday, October 02, 2005

A Lovely Summer Day in Autumn!

It's a beautiful day today, and it feels more like summer than fall! It makes me feel like I should put off things like putting down the storm windows, getting out my fall/winter attire, and decorating for Halloween. Of course, this warm weather is only supposed to last until Thursday, when it'll go back to the normal weather for this time of year. Darn it all! I guess I'll enjoy it while it lasts!

My fat cat turns 5 years old today! It's hard to believe I've had Mittens for almost that long, too. (I got him as a Christmas gift in 2000). I don't know what I'd do without him. It's funny how sometimes your pet can feel like your kid or just another member of your family. Mittens has been wonderful to have, and he cheers me up when I'm feeling down. Yes, there are times when I get a little ticked off at the things he does, but what animal, or human for that matter, is perfect?? So Happy Birthday, my little man! (one of the many nicknames I have for him!)

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Mittens. Really? Mittens. Of all the names out there, you came up with Mittens. Happy birthday, Gloves!Comment from luvmort - 10/4/05 6:30 PM

Happy Birthday Mittens!!! Comment from fitzzer - 10/4/05 8:35 AM

Saturday, October 01, 2005

On The Mend

My sore throat that I caught from grandma last weekend went from bad to worse by Thursday. It was awful! I felt so yucky, and then the cough started. I HATE coughing! Because I have PH, I can't take any type of decongestant. It causes more problems with the lungs. I can take a cough suppressant, but I might as well drink the bottle, because it doesn't always help much. Wednesday night, I got about 4 hours sleep all night since I was coughing so badly. The coughing started making my ear ache so badly, I just wanted to rip my entire head off!! On Thursday I finally called the doctor and got an antibiotic. Yay, drugs!! I had another round of coughing fits on Thursday night, but I did manage to get a little more sleep than the night before. Last night, I didn't cough at all! Yay!! So I'm slowly on the mend. Which is good, because I just hate being sick!! I hope this means I won't get sick for the rest of the winter!!

This coming Wednesday, I have another checkup at the Cleveland Clinic. I'm nervous, as usual. I'm not sure how I'm feeling physically right now, because I'm still sick. But for almost the entire month of September, I was feeling different. I was more short of breath, even to the point where I got out of breath stirring cookie dough for something I was making for my birthday. This hasn't happened in such a long time, not since I started taking the Tracleer for my lungs. I finally figured out that taking generic Claritin was the main culprit, but even after stopping it, I didn't feel completely fine. So I guess I'll just have to wait and see what happens on my 6-minute walk. I'm dreading it. I just don't want to make any changes with medicines, because the next one they want to try if the one I'm on now stops working is one that I have to have in IV form. That is NOT what I want! Obviously I'll have to do it if they suggest it, but I'm just hoping it won't come to that.
I hate being a worry-wart! Here's hoping for good news, though!

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"I just wanted to rip my entire head off!!"I feel your pain! Comment from luvmort - 10/4/05 6:13 PM

I've had the coughing/feeling horrible thing too. I hope you're feeling better & that your checkup is passed with flying colors! Comment from fitzzer - 10/4/05 8:40 AM