Not exactly the type of "Anniversary" someone really wants to have in their life, but, well here I am. A year ago today I was with my husband on the way to his office to help out for the day. We pulled into the parking lot and I suddenly didn't know where I was, how I got there, where my children were etc.. Needless to say it was terrifying. I guess you could say I snapped out of it for about 5 minutes or so and then came back to reality. I made it through the rest of the morning and we headed to an already scheduled medical test (I was having multiple medical issues for a while and searching for answers, but more on that in a future post) and once that was over I had another one of these "episodes" so we cancelled the rest of my husbands appointments and headed to the ER.
Never would I have guessed when I woke up that morning that I would be spending the next 5 days living in a hospital. In those 5 days I learned that those "episodes" were actually seizures, I had many more of them during my stay and for months afterwards. Why I was having them and the numerous other symptoms I was having of course went unexplained. I had test after test in those 5 days, but still I left with no answers.
That wasn't the only thing I left the hospital without. When the 5th day rolled around and I was leaving to come home I also lost years of memories, sweet precious memories that I can never get back. I can't remember my children's first days of school, I can't remember their birthday parties, vacations, family events etc.. At first I thought it was just from the summer of 2010 through the hospitalization, however as time went on I realized it went back years not months. Still something is brought up almost daily that I have no recollection of. Imagine having to ask your 8 year old son about a past event because you can't remember. I have so much more to say about memory loss, but again I will write more in a future post.
Backing up a bit, I knew all those months when my symptoms started to appear and my health was rapidly declining I was dealing with Lyme, unfortunately none of the Dr's I saw were educated on Lyme and I was being tested with unreliable labs and coming up negative and searching for lots of other causes, MS, Fibro etc.. Shortly after the hospitalization I found out about the right lab I needed to be tested through and FINALLY I had the truth right there in front of me, a clear positive test for Lyme.
How sad (but NOT uncommon) that I had to diagnose myself without the help of the medical community I reached out to. It frustrates me to think that what if one of those Dr's had looked into Lyme further and I had started proper treatment, would the Lyme have gone to my brain to cause those seizures and lose all those previous memories? There is no answer and I try not to dwell on that, but it just shows how far we have to go in education on Lyme Disease to help others so they never have to be in my shoes and the shoes of countless others.
This past year has been the hardest year of my life and I know I have a long road ahead of me. Yet even with all the trials I have learned that I have the most AMAZING and loyal husband in the world. He left my side only once during those 5 days in the hospital (for a quick run to the store). He has picked up household chores, grocery shopping, pretty much living as a single parent for months until I could physically pitch in and help a bit more. My extended family also put their lives on hold to be with me when I couldn't be alone after the hospital, taking care of the kids while my husband worked, drove them where they needed to be and the list goes on. I have also been touched by the caring and incredibly generous acts of others. Prayers, meals, rides, gift cards and other support is SO helpful and so appreciated. I don't know how we could have gotten through so far without everyone in our lives.
This post is probably a mess and I know I jumped around a lot, sorry. My brain is a bit fried today thinking of that day last year and all I have been through so far and knowing there is no end date to all of this. I hope to use this blog as an outlet and be able to look back and remember what my journey has been (since I still struggle with memory issues to this day).
A HUGE thank you to Mommalyme for setting up this blog for me, I SO appreciate it :) Check out her blog for another glimpse into life with Lyme http://www.mommalyme.com/
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