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I Wish I Had Cancer

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An online ‘friend’ on Facebook who recently found my blog and then friended me there, introduced themselves to me by saying they were sorry to read about my health struggles. Without asking me anything about my health, and I realize in an effort to be positive and upbeat, this person said, “But smile! At least you don’t have cancer!”

Oh, how I would love to have cancer at this point. Cancer is one of those diseases that becomes a cause. Everyone knows what cancer is, but the thing is, there are some cancers that are highly treatable, some are even curable, and at least with cancer you have something to ‘fight’ and ‘beat’ and you can ‘win’ or ‘lose’ your battle. With me, there’s nothing to fight. I will just progressively get sicker and sicker until my disease, or some condition associated with my disease, kills me. I won’t ‘win’ the battle. The only way I can beat this condition is if I happen to die in an automobile accident or skydiving (like I can skydive with my oxygen tank!) before the disease kills me. Or kill myself, I guess, but that’s just not something I would be willing to entertain, thank you very much. (more…)

CTEPH, PH, Whatever–Does this change everything?

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So the last doctor’s appointment with the pulmonologist was an interesting one. He took plenty of time to answer several of my questions. I asked about the last V/Q scan, and I’m due for another in February–this is the gamma radiation scan that makes me radioactive for up to three days. It’s cool–they give me a sticker that says I’m radioactive. One day, I might become she-hulk. I hear she’s a lawyer. I wanted to be one of those at one time, a long time ago, in another lifetime, it seems.

Anyway, I was asking about being put on the new CTEPH medication that was approved back in October of last year. I’ve been told I can’t be put on it until I get a good right-heart catheterization (RHC). As many of you know, after over an hour of trying to find and advance the line on my RHC, we had to stop the procedure, so we never got results. We’re looking into the fact that my right-sided aortic arch (which is apparently extremely rare), is preventing the advancement of the catheter line. We’ll see. There are other ways of doing the RHC though. We’ll worry about that later. (more…)

So Much Stuff, So Many Thoughts

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I come here nearly every day to write something and almost never end up posting anything. Sometimes, I write for hours and nothing I say is what I want to say so I don’t post it. I feel I’m better for having written it. I guess I needed to get it out. But it’s not what I wanted or needed to say to someone else to read. Sometimes, I start typing and realize I don’t have a clue what I want to talk about. Other times, I have so much to say, I have trouble focusing my thoughts in a direction to write about. Any way it goes, I end up not putting up a new post.

Tonight, I spent a good portion of my evening with my head over a trashcan, trying to keep the contents of my stomach on the inside of my body and not the outside. I was partially successful, and that’s all you likely need or want to know about that. Zofran didn’t rescue me this time.

I don’t know why it happens sometimes. I don’t now what causes it. I don’t know how to make it stop, and I hate it. When things aren’t spewing out that end of me, ti’s not unusual for them to be spewing out the other end of me. This is the lovely side effects of being chronically ill and some of the medications I’m taking.

Over the past week, my diuretic seemed to have stopped working, so I had some fluid weight gain. It’s always miserable when that happens, because my saturations go down. That makes it hard to breathe and being hard to breathe sort of sucks rocks.

I told the doc in my appointment that I have learned how to live with pain, but I still haven’t quite figured out the trick about living without breathing yet.

I’m working on it. (more…)

Being Sick Sucks and Apparently Itches Too

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Those who have been following my most recent health saga on Facebook know I’ve been having horrible itching for weeks now. We’re in the second week, going on the third, and though it’s a little bit better than the first week, it’s NOT getting better. I stopped a medication we think might be causing the problem, but still no improvement. I find I want to just dope myself up and go to sleep and sleep through it–wake up and hope it’s gone.

We might have figured out the problem, which has something to do with mast cell activation–we’ll be doing some testing for that. But I have to say, itching is the absolute worst torture you can go through. I’d rather have pain than to itch like this. Three nights this week, I’ve been in tears, begging for the itching to stop, wishing to be put out of my misery. This is absolutely horrible torture.

My legs are super swollen, my hands are puffy and tender, red and feel awful. I feel awful. Add to that that I currently have this double chin/swelling going on with my face, having trouble breathing (wheezing and low sats) and trouble swallowing–it’s like a full-blown anaphylactic shock type of reaction, but a slow one instead of an immediate one. This all really does indicate mast cell activation too.

Sigh. (more…)

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