182 Days... Of Lupus

Six months ago I had a physical collapse.  I had not felt normal for a long time.  But suddenly I was unable to just push through it and keep going.  Suddenly I was knocked flat.  I was in bed all day every day.  I had no idea what was wrong, and I doubted my own sanity at times as the weird, seemingly unrelated symptoms kept adding up.  I went to the doctor and cried as I tried to describe what was going on.  He ordered some tests and kind of increased my feeling that I was a bit crazy. It was so hard!

The days and weeks rolled by.  We went to chiropractors and doctors, we had blood work and MRIs done, we visited the Emergency Room.  And the symptoms kept getting worse.  Those were dark, difficult days.  When I got calls saying tests were negative I sobbed, I just needed to know what was wrong!  God carried me through those days in a very special, real way.  My amazing husband was absolutely unwavering in his love and support.  Never once did he make me feel like I should be doing more.  And my sweet family and friends, I cannot thank you enough for being there for me!

Eventually we began to get answers.  Definitely an autoimmune disorder, definitely reactive arthritis, so we began to treat those things.  And eventually it started helping.  It is a long, slow, painful process.  Every time I am functioning fairly well we reduce the amount of prednisone I'm taking, and then the pain increases again.  But... I've gone from 80mg a day a few months ago to 15mg a day now.  So, while I still have a fair amount of joint pain, I know I am getting so much better.

Eventually I was diagnosed with Lupus (and maybe a couple of other autoimmune issues).  I have spent the last couple of months trying to learn what I can and trying to wrap my mind around this strange, cruel diagnosis.  There have been times of grief.  I think I've cried more in the last six months than I did in the six years prior to this.  I really just want it all to go away.  

And now?  Well, I still have joint pain, I still have days that the exhaustion hits me like a wall,  I still get tired and overwhelmed easily. I still have tremors.  (I think this is the symptom that I dislike the most.)  And, of course, I have the side effects of being on prednisone for months (hello "moon-shaped" face, good-bye restful night's sleep. UGH!!) But over all I am so, so much better.  I'm able to function more like a human on a day to day basis.  On Saturday I peeled a few potatoes for the first time in six months.  They didn't look great, but I did it!  (Next time you peel potatoes or sweep the floor think about how much joint movement is required!)

As I reflect on the last six months I experience many thoughts and feelings. I'm sad to have Lupus. I'm overwhelmed at the thought of dealing with this for the rest of my life.  I'm scared that I may never be able to do some things again.  But mostly I'm thankful.  Thankful to God for His love and tender mercy that He has poured out on me. Thankful that I'm so much better and that it seems the treatment plan is working for me.  Thankful that my husband and children are so understanding. Thankful that I have hope of continuing to improve. Just thankful.

I want to say one more thing, if you have Lupus, or any other chronic, confusing, terrifying physical problem, please don't hesitate to reach out to me.  I may not be able to do much, but I do understand.  And those of us who understand need to hold each other up!  My email address is erinmrtn@yahoo.com.