The Beginning of it all
Some people are born chronically ill and grow up with a certain knowledge of their ailments. This however is not the case for others including myself. I would like to believe that I was born healthy and then somewhere along the winding road of life the fates were like ahh crap we forgot something. The irony is I have a tattoo that says “ do not forget to enjoy the journey of life from the beginning till the end”
When I first started getting sick we were running around different Dr’s who gave us different diagnoses and treatments some of which caused allergic reactions. Other doctors didn’t even believe my symptoms suggesting “have you tried yoga”. The lowest point was when my gait was so bad I needed assistance walking or when I had a seizure and hit my head so hard I had a concussion and wore a helmet for 2 months. Losing the ability to walk on my own was tough but I started to lose control of my bladder which devastating to ask my husband to help clean me up. Another moment etched in my head was I could not remember words felt like I was a child who did not know words so I wrote things down to communicate.
Finally, we got lucky and were referred to one of the best Neurologists on the east coast. When I called he didn’t have an opening for 6 months. I’m a believer in Devine intervention and someone last minute canceled their appointment and an opening for the next day was available. So my mom and husband drove to see the specialist and while we waited in his office I had a seizure that lasted over 30 minutes, they had to dial 911. He called my husband the next day and said she has a Functional Neurological Disorder meaning my brain sends the wrong signals to my body that we are in pain and eventually gets overloaded and shuts down hence the seizures.
Again I don’t know if I’m lucky or my friends and family are prayer warriors but there is only one Neuro-Psychiatrist who specifically specializes in my condition and when she got my case she had us come in for an evaluation. Our appointment was 3hrs she looked at every single testing I had over the year and a half and she diagnosed me with FND with movement disorder which with the wrong medication actually was making it worse. A year and a half later 13 hospital visits 2 ICU stays and 1 intubation we had an “answer”
FND with a movement “tick” with neuropathic paints is not as common. This is important because not all patients have the same symptoms. As a family, we decided to go to the Mayo Clinic in Rochester for a full workup. I went alone because everyone had to work and the closest relative was my sister in law in Chicago. I know I’m one of the lucky few who get an answer in under 2 years but getting a diagnosis that has no cure but a “management plan” is hard it’s like okay I’m not crazy this my condition how do we fix it (you can’t, you have to manage it )
Eventually, I came back and things got worse for a while adjusting to the new medication and I completely isolated myself from the world. Also, It doesn’t help that extremely sensitive to medication, food, or even air sometimes and that can set my MCAS off at any moment and things can go from bad to worse.
In the beginning, I had so much support so many phone calls and flower deliveries they all wanted me to get well soon. We /They didn’t understand what chronic meant. It’s been close to 4 years since my first diagnosis many others have followed but I’ve learned to grieve and miss the old me. But I have accepted that I will never be that person again and that is okay. I’m still figuring out the new me and although I’ve made progress grief is one hell of an emotion to predict.
My advice to spoonies still looking for a diagnosis do your research ask the Dr. how much experience do they have with your condition and most importantly don’t allow yourself to be a medication test dummy.