March is Autoimmune Disease Awareness Month

Autoimmune Disease-"An autoimmune disease is the result of the immune system accidentally attacking your body instead of protecting it."

I'll never forget the day I was told, "I think you have an autoimmune disease".

I didn't know much about autoimmune diseases, but I knew that in most cases there was not a cure.

And that's just the beginning of all the not so amazing pieces of information I would soon become very familiar with.

It all started with an eye exam at my local optometrist's office at a Target optical just around the corner from my house. I told him that my vision felt weird, I couldn't quite find the words to explain what was wrong with my vision. Sometimes it felt fuzzy or blurry, but that would come and go. Sometimes it felt like my eyes were working slow. All I knew was I had always had perfect vision and this was not what I was used to. We checked my eyes and it kept coming back with the tiniest prescription, so the optometrist said he would go ahead and write it and we'll see if my insurance would even cover glasses for such a small prescription. He told me that my eyes were probably just very tired and I needed some rest, he said I should consider cutting back my hours at work until my vision felt better. I had to wait a few weeks for the glasses to come in so in the meantime I lived my normal life, but it felt like my eyes were getting worse, I was drained everyday I couldn't even explain how tired I was and heavy my body felt, then my eyelid started drooping. I called my optometrist and asked if that was normal for tired eyes, he said no and said I needed to get back to his office as soon as possible. I sat in his office for hours while he was digging through some medical books in his office, then he finally said it, "I think you have an autoimmune disease. This specific one is rare and progresses very quickly. It's called Myasthenia Gravis. You need to see a neurologist immediately."

I went home and started calling my insurance and doctor offices and work. It was not an easy process. My insurance said I needed to get a referral to see a neurologist and in order to get that I needed my primary care doctor to write the referral, BUT I didn't have one so I had to find one...they were all booked out for months. I called and I called and I even started begging and telling them the situation, I finally got one office to say they could get me in within the week. By the time I went in for that first appointment, my symptoms were already progressing. When I told them why I was there they said "well that's a rare condition, we're going to have do some others tests first." I had to really speak up for myself and they finally agreed to do the tests I needed. When they called me to tell me that it came back as yes I could possibly have Myasthenia Gravis they said they would be referring me to a neurologist. Every day felt like I was getting worse, little by little it felt like I was losing myself. I couldn't walk around by myself, I was so tired, I was seeing double, my body felt heavy, I felt weak, even to speak was beginning to feel weird. 

When I had my first appointment with a neurologist he confirmed that I had it and said "This is just the beginning. This disease progresses quickly, you won't be able to drive again, you'll probably need a wheelchair so start looking for a comfortable one. I'm going to start you on mestinon and I'll see you in one week." Then he walked out the door. My husband and I were left in the office feeling scared, hopeless, and just lost. We walked out in silence, drove home in silence, and I think we both silently cried ourselves to sleep that night.

I started experiencing symptoms in August of 2014, I didn't get diagnosed until October 2014. I was upset at how long it took and how difficult it was to even get tested, since then I've heard of many others who have waited YEARS to get diagnosed, some who are still waiting. So many times people are being told that its all in their head, or its anxiety, paranoia...so many things but none of it helps. Autoimmune warriors are forced to advocate for their health, while living with one or more of the over 100 known autoimmune diseases. In many cases stress is a major trigger for these diseases. So just imagine how difficult it can be. If you are an autoimmune warrior, I'm sending you spoons and I hope you never give up! If you know an autoimmune warrior, be proud of their bravery to keep fighting and just be kind because you never know what someone else is going through.