the day everything changed....

It was April 2nd, a Sunday morning, and the minute my eyes popped open I knew something was wrong.  My hands and ankles were hurting terribly, like that of an old woman.  My first thought was "Oh no... is this Rheumatoid Arthritis?" although I thought it was odd that it would strike with the suddenness of a rattle snake.  Aren't we supposed to age gradually?  I popped 3 Ibuprofen and went to work that evening anyway.

The next day was more of the same until finally by Wednesday of that week my ankles were so swollen they looked deformed.  I walked around like an 85 yr. old woman.  I ached all over so I put in a call to my doctor and luckily she was able to see me that afternoon.  My fever was 101.7.  It was then I realized I had been running a high fever that whole time.

My swollen ankle

My normal ankle

My doctor was immediately concerned about the swelling and the fever so she prescribed a 5-day round of prednisone.  10 mg. twice a day.  Within 24 hours I felt like Wonder Woman.  No pain.  Swelling almost gone.  I thought that would be the end of it.  I was wrong.  I finished my round of steroids and by the next day I felt the pain coming back.  The day after that came the swelling.  By the 3rd day the dry, hacking cough.  I continued to run a high fever and pop Ibuprofen like candy just so I could make it to work.  If it weren't for the fact that my job only involved sitting at a desk and doing data entry all day, there is no way I could have worked. Anything more physically-demanding would have done me in.

The cough grew worse.  It got to the point that I could not even hold a conversation without going into coughing spasms.  I had one of those incessant itches that no matter how hard I coughed, there was no relief.  At one point I even pulled a muscle in my side which made coughing excruciating.  I finally broke down and went back to the doctor in spite of the fact that I have no insurance and couldn't really afford it.  Luckily she had compassion and didn't charge me.  She prescribed a round of antibiotics thinking it was an upper respiratory infection.  I knew within 2 days she was wrong.  Still running a high fever and coughing.  God, when would this ever go away?

A week later I was back in her office.  This had now been going on for 3.5 weeks.  Joint pain, swelling, high fever, and that god-awful cough from hell.  What was wrong with me?  I wanted answers.  My doctor wanted answers.  She was more concerned about my fever than anything.  It just isn't normal to fun a high fever for that long.  I told her to go ahead and order the tests.  I knew I needed the tests but had no way to pay for them.   By this time I had gotten word that my job was ending May 4th so I asked about applying for charity at the hospital.  She thought it was a good idea.

I had a whole round of blood work done as well as a chest x-ray.  Little did I know the chest x-ray would be the key.  My doctor called the next day and told me it appeared that I had Sarcoidosis.  Of course I had never heard of that.  The x-ray showed the lymph nodes on both sides of my lungs were inflamed.  Turns out that sarcoidosis is an autoimmune disease that can attack any organ of the body causing inflammation.  It most commonly attacks the lungs which explains that awful cough I had.  Clearly it had decided to attack my joints as well.  Double-whammy.

She downplayed the diagnosis as if it wasn't that serious but hearing a word like that definitely had me worried.  The first thing I did was go on the internet to look it up.  I should have known better.  Any time you get a medical diagnosis you can find every horror story known to mankind on the internet.  The last thing I needed was to add fear to the already unknown.  Back on prednisone I went.  This time 20 mg.  Once again, the pain was gone within 24 hours.  It took about 3 days for the swelling to disappear.  The cough was a bit more stubborn... that took 2.5 weeks to go away.

After 3 weeks on 20 mg. she cut me back to 10 mg.  I will stay on that for two weeks then cut back to 5 mg for a week then to 2.5 mg.  The goal is to get me off this stuff altogether and believe me, it won't be soon enough.  I do have concerns about what will happen when I go off it for good.  Will my symptoms come back?  I shudder at the thought.  It would render me disabled and that is just not something I can accept.

I have made some huge dietary changes since all this started.  In a nutshell I stay away from all the "white stuff".... refined sugar, artificial sweeteners, flour, potatoes, rice, bread, and wheat.  That leaves fruits, vegetables, protein, and nuts.  Lucky for me the only silver-lining in all this is the loss of appetite.  Another side effect of sarcoidosis.  In spite of being on prednisone which is known to make you blow up, I have managed to lose 30 lbs. since April 2nd.  My doctor said I am the only patient she has ever seen to LOSE weight on prednisone.  Lucky me.

I didn't change my diet to lose weight though I definitely need to.  I changed my diet to get my health back.  Turns out that what I am doing is known as the http://thepaleodiet.com/ which has been known to reverse autoimmune diseases.  I always add lemon to my water (which is all I drink now) and I have an apple cider vinegar tonic twice a day using Bragg's Apple Cider Vinegar.  Believe me, this will cure what ails ya.  Just google the health benefits and it will blow your mind.  And once you get used to the tart taste it isn't half bad.

At this point I don't know what my future holds, but I am determined to do my part to manage this disease.  A big part of that is my diet.  Another big part is a positive attitude.  The good news is that up to 50% of sarcoidosis cases go into remission within 3 years.  I am believing I will be one of them.  The way I see it is I may have a disease but I refuse to let a disease have me.  I take one day at a time and with God's help I will have a life.