Fighting vicious invisible and painful autoimmune diseases are very hard and a daily struggle with pain, fatigue, & unpredictability. They are isolating and make it so hard to make plans as we never know when we will be slammed and with what. Just because you can’t see the illness or disability doesn’t mean it’s not there. For the most part we try and hide it. I can guess if you looked in our eyes, you’d see the pain.
This is a tough subject. I am on disability but I got disability after a three year battle long before I was diagnosed with MCTD. I fought for it because I have a urostomy that fills constantly and insanely fast. For those who may not know what that is, I don’t have a bladder. I lost my bladder many years ago to IC (Interstitial Cystitis). Now all these years later I’m told it was probably the autoimmune disease that caused it.
Anyway, for my own sanity I make and sell candles and melts. I use the sanity term loosely because as much as I love to make said candles, it causes me a huge amount of pain to do so. In the beginning it wasn’t so bad, but the disease is progressing very fast for me.
I also didn’t realize when I went into this, that I would have to go to craft shows and markets. Oh how I’ve always disliked them. Add in it does me in to be at them so I miss many. I was at the market for a time and that was not fun on so many levels but try doing it when chemo is hitting you hard. Yes they use chemo drugs to treat this disease.
I don’t know how much longer I will be able to continue unless I have help. Even then It would be really hard. However I don’t want this disease to beat me, and take away EVERYTHING that I love. I’ve lost so much already.
I’ve had this for many years but I’ve only been diagnosed in the last 3. I haven’t had any time to process all that’s happening because I’ve been to busy fighting the disease and fighting with doctors. Many many doctors. Man don’t get me started on that. I may not be able to stop. Suffice it to say it’s been a long, hard, exhausting process that is never ending.
Just for extra shits and giggles, all but one of my specialists are a five hour drive one way. So whenever I need to see my Rheumie or Nephrologist, my Hubby has to take off work to drive me. Ten hours of driving and a Dr.’s appointment in one day. That would be exhausting for anyone let alone when we’re sick as hell.
Add in winter driving in the far north and well, it’s just not going to happen. Try to tell the Dr.’s that and then you’re being non compliant. Damned if you do, and damned if you don’t.