So I’ve been sick now off and on for about two  months. I kept thinking I was going to get over it, and I’d start to feel a little better, then I’d get worse again. When my friend Rissa came to visit, I could hardly get out of bed and spend any time with her and after she left, it only got worse. now that Buffy is back from Colorado, I have no choice. It’s time to go in. We called the doctor, and the doctor’s office seemed a bit flabbergasted that I hadn’t gone in already. They basically said there was just too much going on at one time for a doctor’s visit to do anything. So the hospital it is. But this doctor can’t do a direct admit, which means I have to go through the ER.

I hate going through the ER. A lot of you guys and gals don’t know it, but with a direct admit, you get to go right to your assigned room and wait until they start doing stuff to you. But at the ER, you have to go through the trauma docs who decide what’s wrong with you and then they decide whether to admit you–EVEN IF the doc has orders. It’s their license and their name, so they have to do the work. That’s just how it is. Which means a lot of really unnecessary poking, prodding and needle punctures.

Also, I’ve never once met an ER doc who has ever even HEARD of CTEPH. I have, EVERY SINGLE TIME, had to explain what it was, and why they can’t give me a fluid bag (something they seem to do with just about everyone as a matter of rote). So while I’m lying there feeling like shit, I have to basically give the doc a lesson about the rare disease carrier that is me.

But so that you guys can understand why I’m going to the ER, here I will give you a short (ha! me, short, hahahahah) answer:

The night before Rissa left, I went to the theatre to watch my daughter i a play. I walked from the parking lot into the theatre, up stairs to my seat, back to the parking lot and to a restaurant after to eat, then back out from the restaurant. That was a lot of walking for me. A lot more than I usually do, because I usually am in the wheelchair. I had to crank my Oxygen up to do it. It was hard, but I was proud of myself.

But the next day…. my ankles hurt so bad, and I couldn’t figure out why. The day after that, this happened:

As you can see by the bruising on my ankles, it isn’t a good thing. That bruising isn’t because I hit my ankles or anything. It’s simply because of blood pooling in the legs. The other side of the ankles looked pretty similar.

 

 

 

 

But it wasn’t just the ankles. Check out what my leg looked like:

Not only is that super swollen with fluid, but you can see the bruising up further on my leg and behind my knee as well.

This is the small leg. The other one is about three times as big–seriously. I’m not exaggerating. And it’s shiny and the skin is pulled tight. But as the fluid started to go away just a little bit, I noticed something lovely on that leg too.

 

If you look really closely at the image on the right here, you’ll see stretch marks on my ankle. The fluid has stretched the skin so much and so quickly that it’s left permanent stretch marks–ON MY ANKLE!

I gave up on my body a long time ago. I realize after being sick that I will never be sexy or hot again. (assuming I ever was!)… but I can handle not being sexy or hot again. I can handle thinning and brittle hair and losing the color. i can handle the weight gain. I can handle the fluid retention. I can handle the swollen belly that makes me look 240-months pregnant. i can handle the flushed skin on my face and arms. I can handle the rashes. i can handle not being able to breathe. I can handle the oxygen need. I can handle not being able to walk. I can handle the bad back. I can handle…. well, I can handle any of these things.

But did I have to have them ALL at ONE time? Really, universe. Really?

And stretch marks on my ankles? What the fuck are you doing to me?

So yeah… that’s what happened, all from just going to the theatre to watch a short play.

And I haven’t been able to recover since.

To top it off, I have a rash on my head I’ve been fighting now for about a month or maybe even two months. It’s removing hair from my head, and leaving me with a rash that looks a lot like cradle cap on a baby. But I’m far from a newborn. We’ve used steroid cream on it then a steroid liquid and neither one has done any good for it.

Then the same rash has now started breaking out on places on my body, like my legs, my back, my neck and my belly.

Then the left leg is acting like it might have cellulitis… And I’ve been there before and don’t want to go there again. Cellulitis is what caused the lymphadema in my right leg. Sigh.

And then lastly, it seems every time I eat something–anything at all-my neck and throat and chest sort of swell up and makes it hard to breathe and I don’t know why that’s happening. My eyes are leaking fluid constantly and then the fluid dries and it hurts and scratches me like salt in my eyes. I’m desatting and I’m dizzy whenever I stand up to try to walk to the bathroom and back.

So yeah… it’s time to go in and just let them work me up and see what the hell is wrong with me.

I feel like hell. I look even worse…

And it’s hard not to get depressed when it’s like this. It’s hard not to want to just curl up in a ball and just crawl into bed and tell the world to fuck off and leave me alone.

It’s hard not to do that.

So I did that, for almost a week.

But now I am not allowed to indulge myself any more. I have to go now. I have to go to the ER. Because there are people who love me. Because there are people who don’t see the bald scaly scalp and the bruises and the fat watery belly and the leaking eyes and the stretch marks on my ankles.

There are people in my life who think I’m beautiful, just the way I am.

They are, of course, crazy people. But they’re my people. And I owe it to them to fight and try and not give up or give in.

So I must go… to the hospital.

But I will admit one thing: The main reasons I don’t want to go hinge on what used to happen to me at UTMB when I’d go to the ER. For those who don’t know, UTMB is the facility I spoke about in this blog post. If you want to know why it scares me to go to the ER, read about just a few of the things UTMB did to me. You’ll see.

But the new facility, the one that was so good to me before…. I’ve never used their ER. So it will be a new experience. And who knows? Maybe they’ll do better. Maybe it’ll be a positive experience, or as positive as going to the ER can be.

So… here I go. Wish me luck.

I love and need you all.

Michy