just thinking

I've been trying to figure out what to write on my blog. my 20th year since diagnosis anniversary is coming up, and I was thinking I would say what I have learned since diagnosis, what life has been like since diagnosis, how I have lived my best life these past 20 years since diagnosis, but honestly, have I? my best life I mean, I spend most of my days just lounging around watching Stevie ( or Ellie before her, and my own kids before them), and then watching shows. I have done a lot of advocating over the years, but that stopped a few years back, going on the Hill and lobbying, for example, for whatever reason.

And after the first few years after diagnosis, being on flolan, and then subsequently being weened off Flolan and 11 years on Tracleer, I was able to go back to work part-time and I really enjoyed that. After those initial four years of going (repeatedly) inpatient in the hospital, the thing that has affected me the most is depression.

it never leaves me, even when I'm having a good day or couple days, it's still in the back of my head, taunting me. And those that when I'm not doing that good with depression, it manifests as anger. I am really not an angry person. let me tell you. And I so totally hate that I get angry and bite peoples heads off. you know what I mean? And I so regret it.

When I'm having a good day, if someone says something to me that is upsetting, I could have played it off. But really, not anymore. I lash out and regret it almost instantly. And then, at night, as I am laying in bed, trying to sleep, the thoughts of the day come running back. it's like clockwork.

• I've gotten ready for bed.
• I have my CPAP on,
• and I have said my prayers,

and then like someone turns on a switch, my brain goes into overdrive.

Why didn't you say..... Why did you scream why did you lash out? How dare they say.. and so on and so on. and it doesn't matter that I know I can't say what I think of, or that I already apologized. Doesn't matter that I know Stevie will wake up super early and it's already nearly 2 in the morning. I just hate that!

The worst thing IMO

The worst thing about being sick isn't the medications streaming thru your veins, or the poking and prodding they do during exams or procedures. It's not being able to live your life the way ou want to. For me, that's the worst thing. Yes, I'm better off than I ever thought I would be, and really, on good days, I feel like I'm not even sick. But those good days do come to an end, eventually. For me, I mostly have good days, until I get so tired that i can't do anymore.

I get tired very quickly. I "crash" and immediately need to sleep, or sit down. Yesterday, I was attaching something fun to my desk top at work and had to be on my hands and knees. It was the middle of the day and I was doing well all morning. When I got up off the floor, I was so tired and out of breathe, it really is an awful feeling.

My sister told me recently that women with heart disease who do things where their bodies aren't fully extended, such as on your hands and knees, or bent over to sweep or mop, clean the tub or vacuum, are more likely to  have heart attacks. I don't know where she got her information, but now I'm not allowed to do any of those things. Don't get me wrong, I'm not a neat freak like she is. I'm not even CLOSE! :-) However, if I want to do something, gosh darn it! I need to be able to do, and not worry that my day will be shot because I'm too SOB.

Any kind of hill or stairs makes me SOB and makes my heart beat almost out of my chest.

Chest pains are scary. Are you having palpitations? GERD? or God forbid, a heart attack?

wow, I guess for me, there are a lot of bad things associated with having a chronic, incurable disease.

me myself and I

So I'm Flippymom.. aka Alex. I've got three teen aged daughters who, when they were really young, I was diagnosed with a terminal incurable condition. I was actually given 2 years and told to make memories for my kids to have of me.

So let me back track a couple of steps and let me tell you what my terminal incurable disease is. I have a rare, orphan, invisible disease called Pulmonary Arterial Hypertension. Women are the ones mostly affected, in their child bearing years. BINGO! that's me! Studies are showing that for every 5 women with Pulmonary Arterial Hypertension, there is 1 man. But, for me this is the saddest part, babies are being born with this horrible disease. The elderly are also getting. I guess it would be fair to say, anyone of any age, gender or ethnicity can get Pulmonary Arterial Hypertension.

There are some reasons why people get Pulmonary Arterial Hypertension (PH). Some get it secondary to other diseases such as lupus and scleroderma. others get it because of methamphetamine usage or even diet drug usage. and, wouldn't you know it, I fall into the category of not knowing why i got it... idiopathic, or of unknown causes.

When I was diagnosed in 1998 there was only 1 FDA approved drug for PH, Flolan. Flolan is a drug infused through IV. At the time, only Remodulin, which was still in clinical trials and called UT15 at the time, was the only drug for PH in clinical trials. Since I was so incredibly sick, going into a double blind study would not have been a good thing for. A double blind study just means that some people get actual drug while others get essentially a sugar pill, only Remodulin was given as a shot into the fatty areas of the body, much like a diabetic would get their medications.

So, Flolan it was! I was on Flolan for four years. There was a catheter in my chest 24 hours a day, with medication that I would have to make myself like some kind of freaking pharmacist, and then have to hook myself up to the medication that I carefully put into a cassette, making sure every last teeny tiny bubble was removed. Of course there were side effects, weight loss, diarrhea and nausea, jaw pain, leg pain, flushing of the face, etc.

Finally, after enduring four years of Flolan, I was well enough to be removed from Flolan and be put on a brand new FDA approved drug, which was just one tiny pill twice a day! No more mixing meds, no more line infections, no more side effect. It is a dream come true!

There are now I believe nine FDA approved drugs on the market for Pulmonary Arterial Hypertension. PH is no longer a death sentence as it was before, as long as a patient is on medications and treatment.

I lead 2 support groups in the D.C. area, am trying to get a pediatric support group up in the air, and am doing so well! Thanks be to God!! and my doctors, Dr Frost in Houston TX, and Dr Girgis in Baltimore MD at Hopkins.

I'm sure I will add more to this blog as I get going...

For the Cure!!
Alex ^i^