Chronic Illness

The Battle's ON:

At the age of 33 my world changed.  I was standing over our printer, making copies of schoolwork for the kids when I was suddenly slammed with excruciating back pain.  I didn't hit anything, bump into anything or do ANYTHING to cause the amount of pain I was experiencing.  I took some Ibuprofen and laid down.  Several hours later the pain progressed, my face went numb, my hands went numb and I had vertigo - my husband took me to the ER.  So began my 18 month journey to figure out what exactly was wrong with me.

The doctor in the ER couldn't find anything wrong, so he sent me home with a prescription for painkillers and the instructions to see my GP.  The following day; however, the Radiologist from the hospital called me to tell me that the ER doctor was wrong and that I had multiple lytic lesions in my pelvis.  The Radiologist hadn't been there in the middle of the night while we were in the ER, so he reviewed all the xrays the following day.  He was very concerned about my health, stressing the importance that I follow up with my GP asap.  I saw my doctor 2 days later on a Monday.

Initially, my doctors feared I had Multiple Myeloma.  In fact, the type that they thought I had would have only given me 1 - 2 years to live.  The tests began.  I had many, many, MANY vials of blood drawn.  I had CT scans, MRI's, a bone scan, 24 hour urine studies, ultrasounds, bone density was a whirlwind of activity.  My pain escalated and now included my pelvis/tailbone area.  I was in so much pain that I could no longer sit or stand without great suffering.  The painkillers took the edge off but didn't take all the pain away.  I spent most of my days in bed around the clock.  About 5 days later a new symptom appeared:  from my face down my torso and down both legs I had purple and red spots.  Petechiae.  Bleeding into your skin.  My doctor admitted me to the hospital with the diagnosis of Multiple Myeloma.  We were still waiting for most of my test results to come in, but for all the tests that were back - everything was normal.  EVERYTHING.  My doctor told me he never sees blood tests as good as mine...there's usually at least one thing off: cholesterol, potassium...something.  But to see someone as sick as I was with completely normal lab work, well - he had never encountered that before.

I was in the hospital for several days.  I was on Vicodin orally and morphine by injection.  The morphine did nothing.  My mother-in-law was with me when I got my first doses and she was expecting me to just keel over and sleep...but, no.  The shot burned but that's all.  No pain relief.  At this point I had also lost about 20 pounds, and that meant I only weighed 98lbs.  Total.  So, yeah - that morphine should have done something!  At some points in my hospital stay I was getting double doses of morphine every 4 hours...but it didn't help.  Eventually they gave me Toradol instead, that gave me some relief - finally!

Thankfully, while I was admitted they ruled out MM.  They ruled out cancer altogether.  The next guess was possible auto-immune disease.  I met with the Rheumatologist and he ordered more labs.  This time the phlebotomist came to my room and dropped about 15 vials on my lap asking, "Are you ready for this?".  Sigh.  At least at that point my veins were still good - so she was able to get every vial drawn (not anymore.....).

After processing the blood tests I was shown to have low complement levels and low vitamin D.  They sent me home.  No one knew why I had the petechiae.  The doctor's just said, "Well, you don't look like you're dying."  Uh....thanks.......I was told to follow up with the Rheum. in 2 weeks.  I did.  He said, "Wow, you look great.  Here's a prescription for Naproxen (like Aleve but a little stronger).  All your tests are normal, come back in 3 months...."

I continued to see my GP almost weekly.  He referred me to a back surgeon who told me I just needed physical therapy.  I went for PT, the hydrotherapy helped while I was in the pool - but didn't help alleviate the pain the rest of the time.  Back to GP.  By now 6 months had gone by and still no diagnosis.  I began taking Lyrica, which did help my joints.  The Rheum now guessed I had Fibromyalgia.  My ANA was + but not high enough for him to include it in my differential.  "Come back in 3 months".  The next year was more of the same: excruciating pain, vertigo, vasculitis + weakness and SEVERE fatigue.

During the summer I began having malar rashes and my muscle enzymes began to climb.  My ANA also continued to climb.  The Rheum said it didn't mean anything...come back in December.  At this point I sought out another Rheum for a second opinion - at least a 3 month wait, but I made the appointment for December 31, 2012. In December I saw the original Rheum again an he told me, "Well, we've checked you for everything and it's all negative.  There's nothing wrong with you!  Aren't you so glad to know that?"  I said, "what about my ANA? And the muscle enzymes?".  His response, "yeah, your ANA has changed but it's not significant.  I will no longer be testing it for you.  Even if it rises it doesn't mean anything.  The muscle enzymes can go up when you exercise so that explains those."   Well, sure - IF I was exercising!  I spent the majority of my days at home, in bed or in my recliner.  I couldn't get up off the floor any more.  I struggled climbing the stairs in our home.  I struggled just getting up out of a chair.  And there was NOTHING wrong with me????  I knew at that appointment that I would not be returning to see this doctor again and I was counting down the days until I saw my new Rheum.

FINALLY!!!  I went to see my new Rheum who was wonderful!  She listened to my whole tale, read my files and reviewed all my test results.  She ordered new labwork and guess what?  SHE FIGURED IT OUT!  Normally, you wouldn't be happy to find out you have an extremely rare disease....but I was so relieved to finally know what was going on!  I was diagnosed within 1 week for Sjogren's Syndrome and also showed my ANA was now higher still.  I also had antibodies to JO-1 which indicated possible polymyositis.  I saw my neurologist for nerve conduction studies and electromylogram.  He confirmed the polymyositis based on those exams.

So now at least we know what we are dealing with.  I have an illness (polymyositis) that is found in only 5 - 10 per MILLION people and there's no cure for this disease.  There's no cure for Sjogren's either or for the other autoimmune problems I have.  But, I have an awesome God who has carried us along this path and He knows what's going on.  He has blessed me with 6 beautiful kids who love to help Mommy out.  He gave me a loving husband, a true best friend to shoulder this ordeal with me.  He also has blessed me with great doctors now and we are attempting different medications to try and get everything under control.  My difficulty in getting diagnosed is not unique to me.  I know many people suffer with similar stories; including my own mom who suffers from a different autoimmune problem.  If you took the time to read this whole thing I would ask just one thing:  If someone you know is suffering from an invisible illness...BELIEVE them!  Even when the doctors don't.  Pray for them and for their doctors.  You just might be the blessing that they need today.
Current Diagnoses:
Sjogren's Syndrome, 
Anti-JO1+ Polymyositis,
 Mixed Connective Tissue Disease,
Bulging discs in spine,

For more about my struggle with these diseases please go here. 

1 comment:

  1. Well written and a great "warning" to listen to your own body when you "know" that something is wrong and to rely on the Great Physician to guide you through it all. Love you honey, Mom


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