I know I have blogged briefly about my skin issues and recurrent staph infections and the like, and now I have an official diagnosis:
You can read all about it in that link, or you can just know that it is a very painful autoimmune disease, with a genetic component, has no cure, and basically a person with this disorder has sweat glands that never developed correctly and is plagued with boils, nodules, and blisters that develop most often in places where skin rubs together. It is considered a rare disease, there is much conflict about how to treat it (from surgery to antibiotics), and it is really hard to find a doctor that knows much about it. There is a great deal of stigma around the disease, as misinformation abounds and let me just say that it is NOT caused by poor hygiene and it is NOT caused by being overweight (although some people anecdotally find relief by going on keto diets). It is believed that everyone has different triggers for flares, and so far I have found that my main flare is stress. That is a relief, of course, since heaven knows I have no anxieties or great fears or stress. Hahahahahah!!!
I have actually be unknowingly dealing with this disease for years, it has just now reached the point where it is much worse and is needing treatment. I learned of the diagnosis a week ago, and, rather than being disappointed in having yet another label to my name, it is actually helpful because now I can research and pinpoint and see what might help me.
I have my primary care doctor making a referral to the premiere teaching hospital in my area, basically the same place where anyone goes when they have a rare or serious disease and is not receiving adequate care locally. I am hopeful to have an appointment within the next few weeks. In the meantime, I am just trying to minimize pain, not aggravate things, and learn all that I can.
This flare in HS symptoms has created a bit of a flare in my depression and anxiety, which were on the uptick before I even knew this was what I was dealing with. I am trying to stick to building structure and building mastery, as in keeping a schedule and trying to do new things out of my comfort zone.
LarBear has not been well lately, and it is becoming clear to me that I need to at some point learn that YES I CAN go into a grocery store by myself or go into a gas station and pay for gas or all of those little tasks that he takes care of so that I can pretend I don’t exist in the world and keep me from interacting with anyone.
I am midway through this current round of DBT group, and have discussed with my group leader, and I am going to at the very least take a break after it is done. I have about six more months in this module, so its not coming to an end anytime soon, but I really feel the need to leave myself the possibility of more sessions in the future (insurance limits to four) and I am also getting slightly bored with things.
I have been having the hardest time leaving my house, and I think part of that stems from the fact that my house is so comfortable and clean and chaos-free now. I do a lot of sitting on the porch and listening to music and writing, but have not been doing much crafting. I really feel as if I have no talent whatsoever and I especially feel like I am wasting my time in art therapy. Ok, I’m painting, but I’m horrible at it. I am a failure at it. I really just don’t feel a creative bone in my body other than writing. At least I still have writing.
I went through a meltdown earlier this week because I decided that I was not entitled to the depression I have been feeling. I mean, life is GOOD, I just feel so very sad. Very, very sad. I can’t explain it, and I can only hope that working on building structure and building mastery and trying my hardest to stay busy will bring me out of it. That, and my med doc has given me a tiny dose of an antidepressant that is an SNRI. Just hoping it doesn’t make me manic.
So, that’s life for now and I’m going to keep on living it. My survival rate to this point is 100% and I intend to keep it that way.