A Few Basics--And A Thank You

   I cannot believe just how many amazing people are there for me.  I knew I wasn't alone when this last flare started, I began setting records for not only the number of doctor referrals I was given, doctors I had seen, appointments I had, tests I was given (lab tests, imaging scans, you name it, it was either suggested, or I had it done), diagnoses put on the table and crossed off the list, and my health got worse--again.  What I had no idea was just how many people were there.  As my new specialist got closer to a diagnosis, some people disappeared (which I expected to happen--it usually does when a person gets sick or sicker and doesn't have the time to do things for a certain kind of person), but others came closer and really reached out.  Many to my surprise.  Then the diagnosis came, the tests started to find out about treatment, and reality started to sink in and even more family, friends, and loved ones reached out.  I honestly don't have the words to thank everyone enough or how I feel for what they've done.  For being there, their prayers, positive energy, encouragement, and putting up with my temporary insanity while I adjust to all of this (mostly the medication and all of the warnings, precautions, and changes that come with the treatment).
     But there are a few things that some need to understand.  First of all, this disease is real.  I've had it for at least the last decade, if not longer.  It was never Fibromyalgia, I was never faking anything, being over dramatic, nothing.  I was misdiagnosed.  Laziness had nothing to do with it.  Still don't believe me? Not my problem--go crawl in a hole somewhere, drive off into the sunset, do what you want, but stay out of my life, forget I exist, do whatever you want; I'm done with you. 
     I'm in pain.  Every day, all day.  I have been my entire life.  It wasn't until a decade ago that it got to the point that I couldn't work because of it.  And it got worse from there.  Now I have 3 different medications to control it: Advil and 2 narcotics.  Some days are better than others.  Some days I can't even get out of bed it's so bad.  It's something I can't control, but it's not like I don't fight it.  Nothing changes that fact.  All I can do is continue to fight it and see how I respond to treatment.  Hot baths, heating pads, ice packs, "getting out more," losing weight, and a thousand suggestions won't make it stop.  It's from the disease.  I know most people mean well, but it is what it is.  I've accepted that.
     Like every other autoimmune disease, mine has no cure.  Only treatment.  And like many, steroids is one option.  Except my last specialist tried steroids to treat pain flares and they didn't really work, except to worsen my vitamin deficiencies, cause some kidney damage, and higher cholesterol.  Which means that my current specialist was left to try immunosuppressants.  Also because I'm at the very least 10 years behind the ball in getting a proper diagnosis.  So I'm on a higher dose right now. 
     What does THAT mean?  A lot.  It means I have to make serious changes in my life.  I have to be conscious about germs, cleanliness, injury... It's not where cleanliness or germs wasn't something I wasn't mindful of before, but I have to be very vigilant now.  (Think military clean and germophobe).  And injury?  Never gave it much thought.  Now I have to think hand sanitizer, surgical masks, rubber gloves, all possible ways I can possibly injure myself.  And what happens if I do get injured?  What exactly constitutes and injury?  A paper cut?  Bruise?  So I'm a bit of a neurotic, emotional, anxiety riddled mess and probably will be for awhile.  Not to mention I have no idea how the treatment is going to work.  If I'm going to start feeling better, or if this is as good as it gets.  My doctor doesn't even know.  But those are the basics of it.. or at least a few of them. 
     I know many things are said to make me feel better, or out of the need to say something to show support and I love that there are so many awesome people there for me.  And I am not only incredibly thankful, grateful, and blessed for that, but I also want to use this to help raise awareness of autoimmune disorders (and my own disease).  I will fight this.  I may not have a clue what's going to happen, or where this is going to take me, but knowing how many people are there for me right now (and knowing those same people aren't going anywhere) is what's going to keep me fighting this no matter what happens next.