Medical, Issues, and Apologies

I never seem to know the proper place to be able to vent about my...erm...issues. Mostly medical. I can't stand that person in the crowd that seems to have nothing to do but complain about everything that's wrong with them. I most certainly don't want to be that person. The problem is finding that balance. Where do I stop telling people so that they aren't over-informed and feel burdened by it but still manage to know what's going on in my life. There are so many people who really don't know what is truly happening with me and there are a few who do. I honestly don't know who's who anymore. So I'm writing this here for those people and I will link it to my facebook account with your names tagged so that you can try to get an idea of how I'm feeling and what's going on. I've gotten into the routine of responses like "I'm ok today. Today is a good day," and "I've felt better and I've felt worse" with a big grin and joking nature to try and push it off to the side. Honestly, for the most part, I do feel that way much of the time. Maybe like 85-90% of the time, I'm ok or better. Unfortunately, the left over 10-15%? It stacks up. And then I get it all in my face at one time in a big bang.

I know this... I am in a rough spot right now because I just...feel... tired. I'm tired of people, work, pain, electric shocks, medication,  MD appointments, and mostly of just being tired. I've always been fiercely independent. But I'm just not anymore. I want to be. Very very badly. I want to be able to nudge things out of my way with powerful muscles (they are under there hiding amongst the fat) like I've always been able to do. But I can't. I want to be able to walk more than a 1/2 mile without it causing me pain in one or all of a hundred ways. But I can't. I would like to have the stamina to even think of walking 1/2 a mile anymore since the pain began. But I can't.... I would like to not have to depend on other people to help me into a standing position from time to time because of the pain involved in getting up and down. It's so much easier (and painful) just to stand for a long time and then sit for a long time so I don't have to go through the pain of up and down and the uncomfortable nature of having to ask someone else for help. And being me, it really doesn't get much easier as time goes on. I've been counting on my sweet sweet husband to help me in times of pain and exhaustion for longer than we've been married. I would love to be able to give him a break. All of those things....but I can't.

More importantly, I would love to be able to lose it when I want, cry when I want and otherwise freak the fuck out whenever I want to. But I can't. Because while the help I ask for may be an inconvenience (usually to me more than them), none of the people I see and deal with on a regular basis deserve that. I am. Just. So. Very. Tired. I think I'm honestly probably too pooped to even begin to freak out. I'd probably lose it. I have thrown things in frustration and anger in the last month when I haven't do anything even close to that violent in many years. Not even when my mother was alive and making me angry every day.

So here's the medical crap going on with me so those of you who don't know, can catch up. I have an autoimmune dysfunction called Pyoderma Gangrenosum. You can click there for the link to read the blahblahs about that. It started with one little sore in May 2012 and was officially diagnosed during a hospital stay in August 2012. It's been a non-stop (I don't even know what to call this crap) ever since. I started with two wounds and ended up with 26 at it's worst. Right now I'm down to 5 stubborn little fuckers.

 For me what it does is cause me to have to wear bandages 24/7 with frequent changes, infrequent bathing (no soaking the wounds in water for a long time b/c of bacteria and because it's effing painful), costs me time, money and energy to do almost anything outside the necessary. They believe that I have Psioratic Arthritis. I wasn't sure about that when they first diagnosed it. They aren't 100% and I was closer to 30%. But the longer my immune system gets whacked around with a bat, the more different types of autoimmune issues show up and I now am showing several different kinds of psoriasis. So much fun. Just let me tell you.

I have a once a  month recurring (and expensive) treatment in New Orleans of immunosuppressant drugs that do exactly that. They suppress my immune system. It makes it harder to fight off illness and infection, but it's allowing my overactive immune system to chill out. I see this great surge of healing towards the end of that month. Right about the time all of the debilitation joint pain starts from the rumored psioratic arthritis. I'm leaking like a faucet with a missing stopper. Usually my legs are tinted yellow and pink. It's not pretty. And it smells pretty bad too. About a week after the treatments, I tend to get some kind of infection, usually cellulitis, in the tissue around my wounds. It's painful and my calves usually swell to twice their size. One of the therapists I work with is the one who noticed the trend and I've asked the dermatologist for preventative antibiotics at her suggestion. They would have probably worked this last time had I not spent several hours standing in the swamp after Brandon's accident. More recently, I'm also having a problem with my nerves. I get electric shocks of nerve pain that rolls from my knees to my feet. It's like that sensation of the chills only more painful and very very frequently.  That's really only the stuff I can think of off hand. One by one, these things probably wouldn't be so problematic. However, the fact that I deal with all of this on a daily basis for the last 1 year and 2 months makes it utterly exhausting and I'm running out of good mood juice. But I'm trying. So please bare with me while I attempt to get all of this (emotions n shit) back under control. If I snap at  you or ignore you or seem like I've written you off, I haven't. I just want all the other crap to end so that I can get back to my happy, bubbly self (or as happy and bubbly as I'm capable).

I love you and sorry I'm so long winded. :)