Ok, it's time that I start talking about a thing I'm constantly dealing with.
I have Lyme Disease.
It's not that I'm ashamed to say it, or anything. I sort of keep it to myself in most contexts because it seems inappropriate to just walk up to people and start talking about how miserable your body feels all the time. Not least because of fear of covid-19 and the fact that I'm immuno-compromised because of Lyme Disease. Even if we weren't living in a pandemic it seems wrong to just answer every "how are you?" with "Pretty miserable, thanks for asking." But it is nonetheless true. And it is something, like it or not, that is part of my ongoing reality. So, I think it's finally time to start talking about it.
I don't have any illusions that I'm going to really make a difference for anyone with my discussion or posts of Lyme. But, one of the things that I deal with currently is "brain fog" or confusion and memory troubles. I try to laugh it off. I'm just being extra "lymey" today I jokingly laugh at myself. What other option do I have? But it may in fact be helpful for me to write about it here as a sort of Lyme Journal. Perhaps it'll help me keep track of more of my symptoms and if it helps anyone, that's great.
If you don't want to read about Lyme Disease, I get it. I'm sorry this topic isn't as random, and fun, as most of my other posts. I will keep writing random and fun posts, but these Lyme posts are going to start figuring into my writing too. Skip them over if you're not into it. Ok, that said, here we go:
I have Lyme Disease.
I was finally diagnosed with Lyme Disease in October 2019.
(I had several slight positives in several bands of the IGeneX Lyme test. - note it's not enough for the CDC to consider me a Lyme patient, but it's enough for several doctors to take it seriously and perhaps more importantly to begin treatment.)
Because it's hard to ever be certain you have Lyme Disease and not something else, I can't say too much for a certainty. I have been diagnosed with Lyme, but it could be another infection or any number of other things. I've been tested for mold poisoning, auto-immune diseases and arthritis (I don't have it and yet my hands are arthritic). With the help of not one but two doctors, I am currently operating under the assumption that I have Lyme Disease and possibly another co-infection that we are still doing testing to identify. Nonetheless, I will tell you the facts as I currently know them. I'll amend anything as we go along and find out more.
So, I was diagnosed with Lyme in October of 2019.
But I have had Lyme Disease since December of 2018.
It took nearly a year to find out what was wrong with me, and now it has been almost a year and I'm still fighting. I still feel miserable. So, in roughly six weeks I'll have been dealing with this for two years. While I am hopeful that the most recent tests will give me a better path forward, I'm just tired of dealing with Lyme. Mainly because it's a nightmare.
A multi-year nightmare.
I am lucky that I don't have it as severely as some people and I recognize that. But I am really not well, and the thing with Lyme is that nobody really knows what is going on with Lyme disease, not science, not doctors, there are competing philosophies on Chronic Lyme disease and whether it even exists. Even your friends and family, they don't really understand, or sympathize in some cases. You don't look sick to them, so they don't know how bad it is for you.
Anyway, I don't want to go on today. I just wanted to make a start. If you have Lyme Disease or a co-infection, or anything like it, I'm terribly sorry. If you want to share your story with me, successes, or tearful tales, I'm here.
Other Lyme Disease Posts:
How to Find the Right Doctor for Lyme Disease
How can you be Certain you have LYME DISEASE?
Lyme Disease a List of Symptoms
Lyme Disease the Great Masquerader of Diseases
I Feel Like I'm Playing Lyme Roulette
Let's Put Lyme Disease in Perspective with Covid-19
Do I have Lyme Disease or West Nile Virus? or a Co-infection?
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