In the past few years random symptoms have been creeping up. It started with chronic fatigue and constant joint pain. We chalked it up to our busy lives working with youth and him playing too much basketball. He used to come home and complain he felt like an old man but I just figured if he could play that hard he was fine.
As the years progressed I noticed other issues and really believed he had something like Lupus or Lyme disease. In 2012 I began taking him to doctors and everything was coming back negative. On his own he decided to eat gluten free but the doctors continued to tell him that had nothing to do with his health and that he needed to eat gluten so they could test him and get an accurate reading. It didn’t come back positive for a gluten allergy but did show some unique genetic marker called HNL-B27 which basically just means that he has a predisposition to arthritic diseases. Other than that we were left with no answers from 2012-2014.
In Sept. 2014 Chris was leading his elementary PE class when suddenly his knee went out, or so he thought. His knee swelled immediately so he went to the ER and was then sent the Orthopedic who then had to wait on worker’s comp. to get an MRI. This all happened on a Wed. and he wasn’t scheduled yet for an MRI but his ankle had become red and swollen so I took him to Sarasota ER, thinking they would check him out a little more. They xrayed it and said it wasn’t broken and sent us on our way. He had his knee MRI that next week but wasn’t allowed to get his ankle MRI until that was approved my Workers comp. It would make financial sense to just do them at the same time but I guess bureaucracy trumps common sense.
He stayed in the hospital for 12 days and even though we went to the next town over it was still small enough that there weren’t many specialists that would go see patients. The only answers we really got were that his issues were due to something arthritic or autoimmune, which I could have told you. He lost tons of muscle in his legs and even if he had the strength to stand there was little left to support his weight.
What was funny though was he was in about the time of the Ebola scare and just to show how rumors can get started, we had just returned from picking up our two kids from Haiti on July 31st and even though Ebola was an issue in AFRICA there were quite a few who thought Chris was dying from that because we had been in HAITI. We did have him checked for all the Haiti stuff but it was all negative too.
Since then we have visited Shands (one of the best research medical centers in the state) and they diagnosed him with Spondyloarthritis (or spondyloarthropathy). Basically it’s an umbrella diagnosis for inflammatory rheumatic diseases that cause varying types of arthritis. When you look that name up though it often just talks about the spine and how this is the disease that makes the spine become curved/bent permanently. I was to the point of searching for a second opinion because his issues aren’t in his back… they’re in his feet and legs and he has the chronic fatigue, rash that he gets on his face (like lupus) and stomach issues (like Crohns) yet he tests negative for all of those things. However in my late night searching I found several support groups for people who have this and sadly many start with the debilitating pain in the feet and joints along with the chronic fatigue and it just progresses from there. Some do well with the medications but others, like Chris, seem to just stay sick with the chemo strength doses of medications he has to take.
I’ve been through a lot of emotions about this in the last year. I was angry at first, not the situation, at Chris. Not going to lie, I was about over him being so “lazy”. I didn’t get it. Then his mood and attitude was just so different and frankly it wasn’t a good different either but he’s reserved and quiet and he doesn’t share his issues or problems with anyway so he’d been bottling up all the frustration and fear about what he was feeling and I wasn’t helping him open up with my attitude towards him about it.
Now I’m heartbroken yet optimistic about our future. I hate seeing him in so much pain. I hate secretly watching him at night as he struggles to get out of bed with a cane just so he can go to the bathroom. I hate that we have a family that doesn’t get to be the family I envisioned because he’s too sick to do much with us. Yet, in all this I have this amazing dream of what this next year can be like and there’s no reason any more to hold back. I don’t know that Chris and I will be able to go after our dreams later in life. With his illness and my unpredictable old lady back we better do what we can now so, WE ARE!
So watch out world! The Grimes Adventures are about to begin…..