Autoimmune Diseases Are the Devil

Time has gotten away from me.  I have been sick and haven't had the energy to write.

Everyone on my mom's side of the family has some type of autoimmune related disease.  Everything from Fibromyalgia and Lupus to Chronic Fatigue Syndrome and Multiple Sclerosis, we've got it all!
I was diagnosed with some form of arthritis about 4 years ago.  My doctor has not decided exactly what kind it is, but it's there.
Over the last 6-9 months my symptoms have escalated.  My joints have swelled.  My muscles ache.  Most days my body feels broken. There is a blood test called a SED rate.  It tests the rate of inflammation in your body.  A scale of 0 > 20 is within normal limits.  When I was referred to a rheumatologist a few years ago my SED rate came back at 96.  My most recent blood work showed that my SED rate was 46. It is much better than 96, but it is still very high.  When I have had flair ups in the past I would just be tired and have a lot of pain.  But over these last months, that has changed.  I have started having swelling in my hands, debilitating bouts of exhaustion, excruciating pain, severe photosensitivity, and a lovely butterfly rash on my face.  My rheumatologist seems unconcerned because I have not had a positive ANA test for Lupus and my body does not tolerate most medications that are used to treat autoimmune diseases.  So, I am in the waiting process of getting a second opinion.
The escalation of my symptoms has been a bit tough to deal with.  I have been used to the arthritis symptoms, but everything else has hit me hard.  In order to go out and photograph the beautiful daylilies in my garden, I have to be completely covered up and wait until it is cloudy or my skin will feel like there are thousands of needles sticking me.  When my hands are swollen, I can't write.  My face looks red and bumpy from the butterfly rash. It is something superficial and probably silly in comparison to other problems people have, but I have always had really nice skin and this has been a tough pill to swallow.  It is called a butterfly rash because of the butterfly wing pattern it creates on the face and over the bridge of the nose.
I would think that after all of these years dealing with the pain I would be used to it by now. The truth is I was used to how things were before the symptoms escalated, but now it scares me.  I am scared because there is no formal diagnosis for why my body is going berserk and without that, there is no real plan to treat it.  I'd like to be able to put a name to the thing that is beating me up from the inside out.  I feel like if I have a name for the son of a bitch, it won't seem as scary as it does now.
For now I will continue doing what I am doing: sleeping more, resting more, keep stretching, take better care of myself, lose weight, and reduce stress.  That shouldn't be too hard, right?


  1. I am so proud of you for sharing your story, which in a lot of ways is our family story. It will help many people. You feel terrible but you remain an inspiration sweetie.


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