diagnosis ridiculous

Last week I was diagnosed with a systemic autoimmune disorder called Undifferentiated Connective Tissue Disease. (UCTD)

The immune system's job is to help keep the body healthy by fighting invading bacteria and viruses. With an autoimmune disease, the immune system becomes confused and overactive. This means my immune system is attacking my own cells thinking they are bacterial/viral invaders. (This is different than HIV/AIDS where the immune system is under-active and unable to fight off invading bacteria and viruses.) Autoimmune diseases are thought to be caused by environmental influences and/or genetic predisposition - they aren't contagious or transmittable.

Systemic means it affects my whole body.

Connective tissue is the "glue" that supports and connects various parts of the body; it includes skin, cartilage, muscles, and other tissue in the joints and surrounding the heart and lungs and within the kidney and other organs.

The undifferentiated part means the symptoms I currently experience match symptoms common among several different autoimmune diseases like Lupus, Rheumatoid Arthritis, and Sjogren's Syndrome. And even though I do test positive for Lupus and negative for the other autoimmune diseases, there aren't enough characteristics of a well-defined disease (like Lupus) to make the diagnosis.

Autoimmune diseases have no cure. There is a 50/50 chance my condition will develop enough to diagnose it as Lupus. Which means there is also a 50/50 chance it will remain as it is and the symptoms will never progress.

There are some medications available, but the medications tend to be toxic and the side effects are more awful than what I'm already experiencing. Currently, I'm taking Vitamin D supplements to see if that alleviates any of my symptoms before I agree to take any other medication.

With my cells being so busy kicking their own asses, it leaves the rest of me with very little energy. Some symptoms come and go. Others seem to be a permanent fixture. Essentially I’ve felt like I’ve had the flu for a couple years (achy muscles, joint pain, fatigue, lungs are tight, random fevers for no damn reason, nausea, dizziness). I do have other non-flu symptoms, too (like depression, Raynauds, migraine-like headaches with vomiting, confusion, memory difficulty, etc).

Looking back, I believe this has actually been in development since I was a kid or teen, and has only become more prevalent in the last 5 years. Five years ago I was extremely ill for three weeks with what looked like an extremely bad flu but no one around me got sick - not one person. I was planning to leave my job to become self-employed anyway, so they released me. To help make ends meet over the last 5 years I have tried all kinds of part-time work - mostly temp jobs. But every time I’ve started working I’ve gotten sick within a couple of days. Totally. Not. Normal. I just thought I was sensitive, or that it was my mind rebelling against office work by getting my body to play sick, lol. I had no idea there was something more serious going on. Certainly I feared this possibility, but I didn't believe it.

Over the last couple of years my activity has dwindled considerably as the disease activity has picked up. I'm just not able to be as active as I want to be - when I push myself too hard I get sick. And what is now considered "pushing myself" is pretty lame. I continue to create art for self-expression and income as much as I can. I don't really have the energy to do the marketing and sales in order to have art support me financially. And I really do not have the energy to continue with my coaching practice, and am no longer accepting new clients. This does leave me in a bit of a financial quandary.

I hate admitting this stuff - the exhaustion and lack of energy especially. I've always prided myself on being a strong trooper who pushes through even if I'm not feeling well. So having to slow down (and often do nothing) is hard for me. In fact, a lot of the symptoms really push my ego-buttons. I don't want anyone to feel sorry for me, or tell me how strong I must be, or think I'm full of shit, or be afraid to talk to me, or tell me to buck up, or be mad at me. I don't need advice, or encouragement, or discouragement, or admonishments, or to be told how to feel or think. I don't need anything at the moment besides being allowed to be wherever I'm at in the moment. Listening and nodding is enough.

There is some grieving I will be doing around all of this over the next few months as I work out what all of this means for me.