I don't talk about my health a lot because it's hard to explain in an everyday coversation, but I feel like I should share some of my story in light of the blogs that are starting to circulate about mold illness.
I got sick out of no where back in 2002. As I struggled looking for answers the doctors ordered countless procedures, labs, scans, and surgeries. I tried diets and vitamins and everything you can imagine and nothing worked or showed what was wrong. I came across a book about fibromyalgia and I was relieved as I read about this horrible illness because I thought this was the answer to my questions. As bad as it was, at least I had an answer to what was happening to me. I was desperate for a diagnosis of something, anything. My doctor told me he would never diagnose me with fibromyalgia. I was so confused. Why not!? He told me it would be like sentencing me to a life full of pain and suffering without a cause and he just couldn't do that. He said he knew something was going on but he just didn't know what and to keep looking until I found the answers.
Thanks to him, I did keep looking and I did find some answers. I'm still looking for more, but I promise there is a cause for what we feel. Just to give you an idea. In a decade of horrible pain and too many horrible symptoms to name, maybe two lab tests ever came back abnormal and they were brushed off because they didn't know what to make of it. They could have diagnosed me with fibromyalgia and CFS.
When I finally went to a mold illness specialist, I thought it was too crazy to be true, but he did labs and just like that a dozen came back extremely abnormal. I was shocked. These were actual labs done at a mainstream lab that show what's going on in my body. I had a MRI that showed that three quarters of my brain was showing a lack of oxygen. A main neurotransmitter that controlls many body functions was so low it was almost non existent and my cytokines (immune response) was over 20,000. It ls supposed to be under 2,000.
This wasnt some quack telling me crazy stuff and making stuff up to explain why I'm so sick. That's actually what all the other doctors had been doing for the past decade. This was actual data showing what's going on in my body. It makes me so sad to think about all I've been through and the lack of help out there for people like me.
I know there is truth out there, I've seen a glimpse of it. There's a whole world out there that main stream doctors don't currently consider. So while I don't want anyone who is diagnosed with fibro or CFS who is content with their treatment and situation to feel like I'm downplaying what they're doing, I cannot take that diagnosis knowing what I know and I won't.
Long story short that specialist retired shortly after I met him and now I can't even get a consultation with anyone because I don't have any abnormal labs that they typically deal with. I can't even get in to talk to them about these other labs and I continue to get sicker and sicker. It's just maddening, but I'm writing this because I had a sweet friend ask me if people treat me badly because of my unclassified, unknown illness. I said "No, I've been really blessed to have really supportive friends and family" and I really do, but I know that a lot of people who don't know me well probably still think I'm absolutely crazy or selfish or lazy and that's ok because I'm none of those things.
The thousands of other people who deal with chronic illnesses aren't crazy or lazy or trying to get attention either. We're just really, really sick and were taking it one day at a time just like you do when you have the flu, except we feel like we have that flu every single day.
Please ask me anything. Please tell me it's hard to fathom, but please don't tell me i just need to try harder to do things that are simple for you because that's just not right. You forget that I used to be healthy, I used to have energy, and I used to be pain free. It was taken away in the blink of an eye and not because of anything that I did wrong.
Please try to understand and get to know me. I'm just like you. I have a husband and four crazy boys who are my whole life. I fight every single minute to push through the thick fog of pain and sickness and shattering fatigue just to care for them. I think that puts me about as far from lazy as you could possibly get and why would anyone make this up? They wouldn't. It's horrible. It's the stuff nightmares are made of so please don't go there.
No one should have to live with such sickness, but people do and not only do we survive somehow, we actually have joy. We have so much gratitude for every day that we get with our families and friends because when we go to sleep at night it feels like we probably won't wake up. Sickness is horrible and beautiful at the same time. I am a better person than I was. I don't take the little things for granted and I see the good in really difficult times and I'm so thankful for that. I choose to keep fighing this illness and to keep going because this is my life and I am grateful for every minute of it. I'm thankful for what it's taught me and for the people who know me well enough to love me even when they don't understand.
