Chronic hives & Xolair

I see a lot of people hitting my chronic hives tag, thus I wanted to post an update for anyone scouring the internet for information about this rather strange condition.

I have something called Chronic Idiopathic Urticaria (CIU), which is a fancy way of saying ‘chronic hives and swelling that happens really often and we don’t know why‘. If you have CIU, it means you’re having consistent outbreaks, and there’s no known allergen causing them.

Also, we’re not talking small hives here – we’re talking massive hives and swelling, particularly around joints. Here are two photos – keep in mind, these are not the worst photos I have – but I feel like they show what CIU looks like:

Think head to toe giant hives and swelling of random body parts – that’s CIU. I’ve had both eyes swell shut, both ears swell up, massive swelling of the cheeks and neck to the point where I looked like an evil chipmunk, and I’ve had swelling inside my nose, mouth, and anus. (Anal hives are really not fun.)

Less than 1% of the population has CIU. It seems to be autoimmune, but can happen in conjunction with other medical issues.

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Woes of the chronically ill 99%

It’s been an interesting day.

I had to leave work early due to pain which may or may not be Lupus-related. My Lupus is being a little bitch in general, so I finally made an appointment with a new doctor in at a local university that happens to be a teaching hospital.

Then I went to my appointment, to find that the level of care was night and day level different than what I had been receiving. I’m now under the care of physicians at the local teaching university, all of whom have faculty appointments. I finally have a doctor who understands my frustrations, is familiar with both Lupus and CIU, and doesn’t think we need to wait until my ANA markers look a certain way or I end up in full-blown kidney failure to start trying to calm my immune system down.

I also talked to them about my concerns about what may happen to the assistance program that helps me pay for my CIU drug, which I can’t afford on my own, with the changes that are coming under people determined to gut the healthcare system and privatize everything. They didn’t have a solution, per se, but they get me. And they have people who can advise and guide me through what my options are, should I lose that financial assistance.

While I am still in pain at the moment, and fatigued, I feel more optimistic about my personal health situation than I have in a while. New primary care practice is phenomenal, as is the practice that I see for the chronic hives.

At least, I’m as optimistic as I can feel knowing that my immune system is trying to kill me, that a medication I depend on costs $18,000 a month and I can’t afford that if my insurance and/or financial assistance get fucked with, and that the incoming fascist regime Republican government considers me, a woman, less than human and not deserving of bodily autonomy or access to safe, specialized healthcare.

It’s a weird mix of “I finally feel like I have a really good team of doctors who I feel listen, understand, and are going to give me top notch care” and “Not everyone has the privilege I have to be able to access the healthcare providers I’m able to access, and that access is about to get a lot more difficult, and that’s profoundly unfair.”

I’m taking tomorrow off as both a physical and mental health day. I have a lot cooking in my brain right now, and I’m hoping to take some time tomorrow to finally start writing about some of it.

Tired.

I am…so tired.

One of the things that sucks the most about having Lupus is how easily it can be triggered. I had to go to a meeting on the fourth floor of a building, only to find the elevator was out. So I had to slowly drag myself up four flights – which, to a normal person, wouldn’t be such a big deal. To me, it was an incredibly daunting task. On top of that, I work on the third floor of a building with limited elevator access – the elevator doesn’t go to my floor, so any time I need to go anywhere, it’s up and down stairs.

So I was worn out from that incredibly simple hiccup, then had two classes. One wasn’t bad – over by 8. The other isn’t over until nearly 10. I don’t get home until well after 10. That’s…really late in my world.

Not that I never stay up late, but it’s one thing to be laying in bed screwing around on my phone. It’s quite another thing to be in a classroom, trying to actively participate when I can feel myself completely shutting down.

It’s moments like that when I wonder, can I actually get a PhD? I want to keep working, because I don’t know if I’ll be able to work outside of home forever. Having a PhD in my field would help me in the future, as I could do consulting work remotely if I ever find myself unable to hold a full-time job. Which is a real possibility when you have autoimmune issues.

Thursday, between the stairs and the class, was so hard, and Friday I was dragging. My joints hurt, and I felt worn out. Then I wiped out so hard on Saturday just from walking at a leisurely pace around the zoo. Came home and pretty much crashed the rest of the day.

How…am I going to do this? How…the fuck…am I going to do this? This is just the first week…it hadn’t even gotten hard yet.

This is where chronic illness fucking sucks – I deal with the flares and times I don’t feel well better than I deal with the realization that this illness means there are things I can’t do. It’s when I feel limited that I really start to get depressed.

But we’re going into a new week, and all I can do is take it one day at a time. My goal right now is just to get through this quarter. One week down, nine more to go.