Wednesday, September 9, 2015

Health Update/ Hidradenitis Suppurativia

Hey everyone!

Today's topic is one that's very personal to me, a little embarrassing because of the misconceptions, and it's what I'm dealing with right now. In my last blog I mentioned that I might do a health update. I wrote one, but it turns out that I wrote the bulk of this blog a long time ago when I was thinking about doing an entire post about the topic, so I figure that now is as good a time as any. Here we go.

I have a disease called Hidradenitis Suppurativa. What this disease is is actually a debate, but it is basically a chronic cyst issue. There isn't a whole lot of research on what causes it and there are very few proven treatment methods or methods of prevention. However, I can tell you what it is in its simplest form and why it's so awful.

At any given time, I probably have a cyst on my body. It's not a cyst like you would think it is-- it is not a tumor that can be cut out. Basically what they are are tiny-- or large, depending on what your body has in store for you-- boils that can occur all over the body, especially in high-friction areas or folded areas. The most frequent places for these cysts to occur are in the armpits, at the top of the tailbone, under the breasts, or on the groin area. These are not hard rules, however, and they can occur anywhere. They also tunnel beneath the skin, so multiple cysts can be connected by tunnels and these tunnels can scar.

Let me preface this with the following statement: These cysts are not caused by lack of hygiene. They are not caused by the foods you eat. There is a debate of whether they are caused by an autoimmune disease in which the body attacks itself-- and there is often evidence to support this, as many HS sufferers also battle rheumatoid arthritis even though all tests come back negative for RH, like they did for me-- or an issue with how the body produces and expels its natural oils. There is little that can be done other than taking a low dose of antibiotics for a very long period of time or simply letting the boils do what they do and living with it. It is incredibly painful and often debilitating to the point where, depending on where they develop, a person can no longer move a certain part of their body because the pain is too much. Sometimes the cysts have to be lanced open and drained or corticosteroid shots are administered directly into the cysts.

My first cyst occurred in my left ear lobe. It was truly terrifying and I had no idea what was going on. I was at a friend's house watching a movie in their basement, and my ear had been in pain for days. It was red, hot, swollen, and I couldn't touch it. Halfway through the movie, I got up to go to the bathroom to check on my ear and found that the back of my ear had sort of split open and it was draining. Thankfully I don't have any scarring there, but when I got home I mentioned it to my mother and she told me that sometimes my dad got those, and he would just put a hot compress on them and it wasn't a problem after a few days. I didn't think to associate it with genetics at the time, but now I know that it is definitely something that can be passed down.

Since then, I've had them on my back, waistline, thighs, in between my eyebrows, on my chin, in my armpits, on the top of my tailbone, on my nose, and a few other places. I'd have to say that the worst was on my tailbone. Because that one takes you to your own special little place in what feels like hell, it even gets its own special name: pilonidal cyst. I had to go the dermatologist and have it lanced (i.e. they stuck needles in a very painful, inflamed part of my body to "numb" the area-- which wasn't very numb when they started squeezing the heck out of it-- and then they cut the area open with a scalpel to drain it). I had to take a lot of time off of work because I simply could not walk, lay down, stand, or sit. Everything was excruciating. The cyst occurred a second time almost immediately and thankfully drained by itself and never reoccurred, but I do have a lot of scarring from that one that I'm very self conscious about. I live every single day in fear that it will come back because I was told that if it ever came back a third time, I would have to have surgery to remove the glands from that area. Don't make the mistake I did and look up "pilonidal cyst surgery," because even if you've never had one you'll probably be paranoid that you'll develop one after seeing that.

The point here is that there is so little information about the disease and so few people talk about it because it is taboo. No one wants to tell someone else that they basically have an infected zit somewhere (possibly very personal) on their body and it's messing with their life. People make all sorts of assumptions about the disease and it makes it extremely hard to talk about, even though I've known at least two other people with the disease for completely unknown reasons.

Fast forward to two weeks ago and I got a cyst under my right armpit, which quickly tunneled under the skin and created several more cysts. I ended up with 5-6 cysts in my right armpit, plus I had started to develop them in my left armpit and those tunneled, creating about three of them. I had been having trouble moving my arms and sleeping since last week, but on Sunday I woke up in the worst pain any cyst has ever given me (besides in 2012), and insurance or no insurance I had Patrick take me to urgent care because I was ready to have someone slice them open. Unfortunately (or fortunately? I'm not sure) there was no clear place to cut and the cysts got to stay while we figured out a different way to treat them.

Since then, I've been on antibiotics (oral and topical) and I've been on a hefty amount of ibuprofen (more than I care to admit because I'm probably destroying my kidneys). To say it's been hell is an understatement. I can't clasp a bra behind my back my myself, I can't lift my arms past shoulder height, I can't shave my armpits, and I can't carry a purse or a bag unless it's for a short distance. My right armpit, which was the worse one when I went in to urgent care, is so much less painful than when I went in that I can't even believe it. My left armpit, on the other hand, seems to be getting worse and I've been having sharp pains and there is a strange redness spreading down my bicep from my armpit. Thankfully I have a follow up with the same clinic today after Patrick is done with work so we will see what the heck is up with that very shortly.

I think the best thing that has happened in all of this is that I finally have an official diagnosis, because I always run into those people who say "well, has a doctor diagnosed it?" and I'm honest and say "well, no" and then they discount any pain or suffering I'm in because someone with a degree hasn't confirmed that yes, I have every single symptom of the condition that I've been suffering from for years.

The crappy part is that even though I have a diagnosis... There's really no way to treat the condition. I've heard that turmeric can help, so I've been taking capsules of that but I have no idea if it's having any effect, and I use Hibiclens to wash the areas that I most often get the cysts, but they still persist. Antibiotics don't always help (although thankfully they seem to be helping in this case) and there are no preventative measures you can take to completely stop getting the cysts that have been proven to work other than surgery (which really butchers the body and includes a lot of skin grafting). I know that I'm fortunate and that my condition isn't nearly as bad as some out there and I'm lucky enough to have avoided surgery and have mostly avoided doctors up until this point, but that doesn't mean my suffering isn't real and it doesn't absolutely suck.

My hope is that I can get my hormones under control (they have been extremely imbalanced lately and I've been trying to get them to balance out, which is what I suspect caused this flare up) and that I won't have to worry about them too often anymore.

Anyway, that's what's up with my health right now and I'm just dealing with the problem until it goes away. Otherwise, I've just been dealing with more of the usual stuff, nothing terrible. I hope everyone (if anyone is reading this at all) is doing well and they never have to suffer through a condition like this one.

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