The first half of November has seen me sleep more than I have been able to in months. A lovely trip to Melbourne for PAX allowed for me to forget about the realities of home for a few days, only to be met with welcoming arms a cold/allergic reaction/virus combination that saw me spent 2 and a half days in bed completely, and so far a week being completely lethargic, aching and nauseous.
Over a few months I have done more tests than I had previously in my life, and everything brings back something new. The very first opinion of “I could have a dozen little things wrong with me that are culminating into a huge mess” seems to be the most accurate. Doctors have found: a syrinx in my spinal cord, 2 spots of newly developing scoliosis, osteophyte development indicating small degenerative change, sacroiliitis, and indications of Scheuermann’s Disease. However, none of these are big enough to warrant a larger diagnosis of something such as the previous leading theory Rheumatoid Arthritis – yet if left to worsen they could have easily developed into something irreversible.
I still have a strong tremor, food intolerances and find myself throwing up for no apparent reason. However, I am feeling better than I was 6 months ago. The problems with my back all come to the same thing – prolonged periods of standing only make the pain worse. Since I was 14, until 6 months ago, I worked exclusively in retail. Retail, hospitality, music festivals, big nights out and waiting in line for excessive periods of time are a thing of the past (a real sign should have been right before I quit my job and moved to Brisbane, Tim and I lined up for Free Comic Book Day only 2 hours in to have my back and legs give way and I almost fainted in line. What followed was vomiting in public restrooms for half an hour and a cab home to vomit and cry through the night). Life is different for me now, and I have to accept that.
Luckily for me I found a wonderful Rheumatologist who is running every test, cancelling everything out and telling us what matters and what doesn’t matter. Unfortunately, he appeared only after a complete wanker of a Neurologist who didn’t believe a word I said and left me in a very sad, dark and lonely place full of self doubt and anxiety. Timothy spent far too many nights holding me as I cried and couldn’t understand how it could all be “in my head” and what if it wasn’t real. The magnificent human being he was always told me he believed me, he trusted me and had seen me at my worst – “why would anyone want to go through this” he simply said. How does a happy wonderful day out turn into 4 hours of vomiting at the drop of a hat, how does a physiotherapist tell you your back muscles are “on fire” and they don’t know how to stop the spasms, or how do 9/10 Doctors agree something is really wrong if it’s all in your head.
For my fellow spoonies out there, if you have a doctor you don’t like DO NOT put up with seeing him. Find a new doctor. Get opinions. See multiple specialists. Get tests done. Do not put up with someone’s opinion when they refuse to look at the facts. What matters most is how you are feeling. Don’t be afraid to seek comfort in someone else going through similar changes, the internet is a wonderful tool to connect and reach out to people. I wouldn’t know half of what I know now if it wasn’t for forums and blogs and the wonderful people behind them.
Saturday there is another test, followed buy almost 2 months on new supplements, change in diet and some alternative medicine that so far I have responded well to. Actually, perhaps the best out of everything since most prescribed medication I now react to…
This all could come down to that one little tick bite that sent me into anaphylaxis when I was 16, and a whirlwind of events since. If I hadn’t had my jaw surgeries this year, who knows what could have happened if the damage continued to be slow and steady. 10 years from now it could be something I couldn’t reverse. At least today, there is still hope.