Monday, October 29, 2007


I usually don't mind cooking. Sometimes I put no effort into it, because I just don't feel like it. But there are times I really do surprise myself. I woke up from a nap this afternoon wondering what to have for dinner. I decided to have leftovers from the other night: marinated chicken, brown rice, and peas. Then I thought, I really need to make the yellow squash and zucchini I have, so I decided to sautee them in olive oil, and add the peas and rice to it, and mix it up. Then I thought, why not cut the chicken up into small pieces and throw it in there? So I did! Lastly, I realized I had a can of Italian flavor canned tomatoes, and I thought, hey I'll throw that in! My goodness, it was such a yummy meal! I only had a small serving of it, and I'm still stuffed. I have to say I'm quite proud of myself. And of course, it made so much that I can have it again for lunch and dinner for 2 days probably. I didn't even use a recipe!

I can't say the same for my split pea soup I made from scratch yesterday. It looked good, smelled good, but when I had some for dinner, I just wasn't feeling it. I was so disappointed. I tried some again for lunch, and actually ate the whole bowl. I think it was mainly because I was so hungry. I just don't want to have to throw it all out because I won't eat anymore. I think that was my last pot of homemade split pea soup forever! I'll just eat my mom's whenever she makes it! :)

Saturday, October 27, 2007

Blah Saturday

I can't believe it's Saturday already. Where did this week go? It seemed to start out sooooo slow at first. Monday was such a long day. Twelve hours at a hospital is just not fun, not to mention it was a gorgeous day that I missed, too! Tuesday, I was back there again with my mom. But the good thing was, we brought my dad home. :) He's doing pretty good, just in a little pain and discomfort with the catheter. This coming Thursday can't some soon enough for him. He gets it out then, and I'm sure he's counting down the hours!!

Wednesday I went to my sister's house, and played with my niece. I hadn't seen them in awhile. The kids are just so cute. And spending time with Mandy is always fun. I am proud of her. I never thought she'd be the first to be a mommy out of the 4 of us, but she's done such a great job so far. She loves those kids more than anything, and I admire her for her strength.

Thursday was chore day. I didn't do too badly. I washed 2 loads of laundry, folded them and put them away. I washed my dishes. I also took out my winter wardrobe, and put away my summer stuff. Finally! And just in time, too. There's no way I'm wearing anything summery again for awhile. I'm sad about this! Anyway, I paced myself all day doing stuff. So I didn't get myself utterly exhausted. I hate that I have to do that, but I'd hate myself more if I didn't!

Friday, I felt so weird. I don't even know how to explain it. Not enough energy to get through the day, but somehow I did it because I had to. I went out to a few places, credit union, post office, pharmacy. Then I stopped by my parents' house to see my dad. The reverend from his old church was visiting. I called first to see if my dad was sleeping, and my mom answered, saying Rick James was visiting. I was like, "Isn't Rick James dead??" LOL Anywho, he was a nice man to meet. After he left, I stayed for a little bit, but then went home.

Today was just blah. I never even got out of pjs. I spent most of the morning online talking to people, reading stuff, playing games with my sister. The weather today was a bit warm early, but then eventually got chilly. I can't techically say I know this, because I didn't actually go outside. But the wind was pretty bad, and it was wet on and off. Hardly any peaks of sun. Maybe for like a minute. The only thing I finally did was change my bedding, which is not fun for me. I just cranked up the oxygen, and took my time. At least it got done, and now I will feel snuggly in clean sheets tonight!

That's about as much excitement as I can tell about right now. I'm off to take a shower!

Monday, October 22, 2007

Update On My Dad

This is going to be brief, since I'm exhausted from being at the hospital for 12 hours. My dad's surgery went well! There was a slight complication in the beginning, that his doctor almost didn't think he'd be able to continue. But, his doctor persisted, and overcame the obstacle, and the rest of the surgery went smoothly! It took almost 5 hours, and around 9pm we got to see him. He was still rather groggy, so we didn't stay too long with him. But I am so relieved that everything went well. We will go back tomorrow morning, most likely, and my dad can come home around 2pm. So right now, I'm off to bed!! Thanks for the prayers out there, I know they have helped my dad through this surgery!

Sunday, October 21, 2007

What An October

This October flew by, and although there are still several days left, I'm rather relieved. I don't usually like when the months fly by, but this month was just so busy for me. Between going back to Cleveland in the beginning on the month, to three weekends in a row with major plans, I'm wiped! This weekend was my support group meeting, and it went really well. I had two UB students come talk about diet and nutrition. I had given them the PHA's website so they could learn more about pulmonary hypertension, and I was very impressed with how much of their talk incorporated appropriate ideas for PHers. I learned quite a bit, and the PHers who came to the meeting were great and asked alot of questions. It definitely went well!

Tomorrow, my dad is going to Roswell Park Cancer Institute for surgery. He discovered a couple years ago that he has prostate cancer. The doctors took a wait-and-see approach in treating it, and while the cancer is still not at a high risk point, the doctors saw something in his testing over the summer that prompted my dad to make a decision about having surgery. I know my dad doesn't want to do the surgery at all. He said he'd rather just live with the cancer. He's more worried about the possible side effects from surgery than dying from cancer. That's been a very hard pill for me to swallow, even though I know that is his decision. However, I'm very relieved that he is having the surgery tomorrow. So I've been praying for him for a couple months, that everything will go well, and his recovery will be quick, too!

Not too much else to report, really. I think I can finally concentrate more on making jewelry, and some gifts for people who asked me to make things. I want to have a jewelry party or two, so I need to start thinking of where and when. I need some cash, plus I just like people to see what I've made! lol

Well, I'm off to bed soon. I'm very glad that my dad doesn't have to be at the hospital until 10:30am. I think I'd have to find a hospital bed if he had to be there at like 6:30am. lol

Wednesday, October 17, 2007

The Ideal Day

Once again, it's that time of month for dear Judi's Artsy Essay Contest! Please see the rules and regulations for this month here. I entered a couple month's ago when Judi decided to revive this wonderful contest, and decided I'd like to give it a shot this month! Here goes!

My Ideal Day

My ideal day would start out at 7am to get ready for work, instead of getting up to take a pill.

My ideal day would be going to work as a teacher, instead of wondering if I'd feel well enough to do anything for that day.

My ideal day would be working out at a gym, instead of hoping to have enough energy to just walk for 6 minutes on the treadmill at home.

My ideal day would be to freely walk about around my home and in public, instead of being tethered to a plastic tube going into my nose, providing oxygen to keep me going.

My ideal day would be remembering meeting times with friends or family, instead of keeping track of the 8 different times I need to take a pill or vitamin in a day.

My ideal day would be to go for a walk down the street with energy, instead of feeling so short of breath that I have to stop walking for a few minutes.

My ideal day would be to hope in the car and go for a drive, or a long trip, instead of worrying about what to do for oxygen needs and if I had enough medicine to do so.

My ideal day would be to keep going from one thing to another, instead of needing a nap in the afternoon just so I can finish the rest of my day.

My ideal day would be to be a normal person, with no health concerns, instead of being a pulmonary hypertension patient wishing that every day would be one that I can make it through.


Saturday, October 13, 2007

Busy Day!

Today is the wedding I've been planning on going to for like months! My sister, Lisa's, best friend is getting married. Kat has had her wedding planned out for months, and she's been looking forward to it. Lisa flew into town on Thursday, and her husband got here yesterday. Lisa's been pretty busy since Thursday! We haven't seen much of her, but that's to be expected. The wedding is at 2pm, and the reception is at 5pm. So I'm just trying to get as much rest as I can so I can make it all day. The weather is so much cooler than it should be this time of year. Which is kind of funny, because just last weekend it was so much warmer than it is for this time of year. I wish the weekends could have been switched around! Anyway, that's my Saturday. Started off with a flu shot at 9am, so I am hoping I won't be in pain later on. That might not be fun!

Wednesday, October 10, 2007


I don't know where the energy came from today, but I have accomplished quite a bit. Even despite feeling a little blah. My sister and her husband are coming into town this weekend for a wedding that my whole family has been invited to. Lisa is in the wedding, since it's her best friend from high school getting married. So, I needed to clean up around here before they were coming! Well, I needed to clean period, but they were just motivation!

So from about 11am-2:30pm, I did the following:
-cleaned the bathroom
-vacuumed: thank goodness for the removal of carpets this summer from my place, because vacuuming takes far less time and effort to do now!
-hung up a couple pictures, and hit my thumb with the hammer AGAIN
-cleaned the glass table and mirrors
-hung up Halloween decorations, including those fake spider webs, which now makes it look like I've never cleaned! haha!

So, I guess maybe the Revatio is kicking in?? I don't know! I think what helped me along was the fact that I was listening to music the entire time. Music always gets me motivated! However, by the time 4pm rolled around, and I had finally had lunch and sat a bit, I was pretty tired. I tried taking a nap, but that was kinda unsuccessful. There is still alot more I'd like to accomplish, but I am not going to press my luck by doing any more today!

Saturday, October 06, 2007

Flea Market Blues

I got all ready for a huge flea market that I signed up for today this week. I was so excited! I was hoping to sell at least one or two of my jewelry items or tealight lamps. My mom came over and got me around 8:30am. We packed the van with stuff (she had also some miscellaneous items she wanted to get rid of), and headed to the place where the flea market was supposed to be. It was nice and sunny, and I was prepared to have a nice afternoon!

We got to the place, and there were a ton of people setting up their tables. I found my table after trekking all over looking for it, and I started setting up my items. My mom made several trips to the van to bring all of her stuff, and eventually we got things situated. People started coming, and it was nice!

About 45 minutes later, ominous clouds started hovering above us. I thought, geesh, it isn't supposed to rain today. I saw the weather report at least 4 times for Saturday, and there was no rain involved. So I thought we should be alright. NOT! About 15 minutes later, it started drizzling. I saved the tealight lamp shades right away, since they are made of paper. We covered my jewelry with plastic bags, and waited to see how bad it might get. After a bit, it let up. For 5 minutes. My mom went to get us food, and it started really raining again. We eventually just packed everything up and left. I was so soaked by the time my mom dropped me off, that I had a hard time getting my jeans off to change. lol My fingers were wrinkled like prunes!! I don't know if there are people still there, although I'm sure there are. Some people left like we did, but quite a few were staying. I can't blame them for trying, but I just didn't want to take a chance of catching a cold or something!

Of course, now as I'm writing this, the rain has stopped and I see some sun peeking through. *SIGH*

A funny aside, however. I got hit on while there. lol There was a black guy at the table across from mine, he was nice and cute, too. when I was almost ready to leave, he said "well if you're not coming back tomorrow, how will I get your number?" and I said "what do you need that for?" and he said "cuz you're beautiful." *BLUSH* Then he said "your man is so lucky" and I said "yes, he is!" LOL I technically don't have a man, but I wasn't about to tell him otherwise! I just wasn't interested because, well, I happen to like someone else. :) :)

Alright, now that I'm completely tired from being up so early, and then being soaked, I must go take a nap!

Tuesday, October 02, 2007

Cleveland Results

I got back from Cleveland last night around 7:30pm EST. It was a long day, with some interesting results. Not exactly terrible news, but not news I was expecting to really hear either.

First of all, I had an echo. Now I've never had an echo done by a man before. I was a little concerned about it, but the guy was very nice! His name was George, and he was from Romania. George was quite entertained by my last name, which means "hurry up" in German. So he did the echo, and he was very good at it. I've had some techs who I've wanted to slap because they were pressing so hard, it hurt like crazy. He told me if he was pressing too hard, to let him know. But he wasn't! I hope that George is around the next time I need to have an echo done!

My bloodwork was next, and that went just fine. I didn't have to wait in the long line I saw when I passed by on my way to get the echo done. There were like 25 people in line then, it was nuts!!

After having some soup for lunch, I had my 6 minute walk. I had a feeling I wasn't going to do well, and that feeling was justified afterward. I went down yet again, only walking 1065ft. That was down about 200ft from the last time, and the time before that, I had also gone down about 250ft. My doctor doesn't really like this trend of mine. I don't really like it either!! I was hoping that he was just going to tell me to go up on Revatio (which he eventually did), but he started looking at all the times I've been to the clinic to figure out what to do with me. He is concerned that my lungs are eventually going to need to be replaced, considering especially that I've had PH for 32 years. That is a LONG time for lungs to be diseased and still viable. But he is not saying that I need a transplant right now. There are still some options, but of course, he doesn't want me to be so sick eventually that I wouldn't make it through a transplant.

There are several other treatment options, some of them my doctor isn't too thrilled about. He isn't sure he wants to try Ventavis with me, which is an inhaled drug. He is worried about my congenital heart problem with Ventavis. He's not thrilled about the new drug, Letairis. He says it's causing alot of stomach problems with patients on it. He's not thrilled with Flolan either, the gold standard in treating PH, but he wouldn't not offer it to me if it came down to that. He knows there are risks with Flolan, especially line infections, which wouldn't bode well for my heart if I had one.

Another issue I'm having is that my blood is so thick, from the lack of oxygen in my system from all the years I've had PH, even despite being on oxygen 24/7 and coumadin for a long time. My hemoglobin count is getting to the point where I will probably need a "blood letting." I can't remember the technical term for it, but basically what they would do is take out, say, a pint of my blood, and put back in a pint of saline. That would thin my blood out a little. Right now my hemoglobin count is 19, and my doctor said he'd probably advise me to have this procedure when I hit 21 or 22.

I also told him about the palpitations I had over the weekend. He said that the pediatric cardiologist I've been seeing at the Clinic wrote a few years ago that if I start having more palpitations, my heart could start having arrythmias. That is not something I want to happen, because it would mean my heart is getting weaker, and then I might need to transplant that as well. I just want my heart to be fixed!! Because other than the holes in my heart, it's been pretty strong.

I think the most disheartening finding out everything I found out yesterday was the fact that I gained 5lbs since August!! I don't know how that happened. I was quite shocked by it. I asked if Revatio could make you gain weight, but my doctor said he didn't think so. I also know that the weight isn't water weight. That, at least, is a good sign, because it was water weight, it would mean my heart isn't operating correctly. Soooooo, I need to get back on that darn treadmill and start walking more!! Even if it's only 6 minutes at a time! I know I sound like a broken record, but the shock of that weight gain in such a short time really makes me realize that I need to exercise again. Gaining weight like that is really not good for my health situation, it strains everything. Not what I need!!

So, I'm going to hope that the Revatio will put a little kick into my step soon. Maybe the next time I go to Cleveland, I will do better on my walk. I'm really hoping that is the case. But in the meantime, I need to really start coming to terms with the fact that I'll need a transplant at some point. My doctor thinks that I would do really well with one whenever the time comes. I like to think I would, too. I do hope it can be put off for awhile longer! But we'll just have to wait and see what happens.