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 minor concussion and wore a helmet for 2 months. Losing the ability to walk on my own was tough but when I started to losing control of my bladder was my lowest point, It was devastating to ask my husband to help clean me up in that manner. Another moment etched in my head was there was a medication meant to reduce seizure also reduced my ability to “think fast” . Losing the ability to control my body was one thing but losing the ability to communicate and form sentences was heart breaking. To me it meant I could not verbally be part of a regular conversation,I lost my talent of being sarcastic. I was a child again and needed to relearn words.
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. * This same situation happened when my mother in law called a world renowned immunologist. When we called there were no appointments but when she called some one had cancelled that very day and I got it *
Anyway my mom and husband drove to see the Nuerology specialist and while we waited in his office I had a seizure that lasted over 30 minutes, and eventually they dialed 911. I had just been discharged from that very same hospital the night before and here I was again . While we waited the Nuerologist called my husband the and said she has a Functional Neurological Disorder and started to explain that my brain sends the wrong signals to my body that we are in pain and eventually gets overloaded and shuts down hence the seizures. This is also the case for my allergy disorder my body creates way to many white blood cells as of to fight of some kind of infection or an allergy.
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 our nuerologist called on our behalf to explain the situation. When she got my case she had us come in for an evaluation the following week. I don’t think I’ve ever had an appointment that was 3hrs long but she looked at every single testing , imaging etc I had over the year and a half and she confirmed my diagnoses of FND and a movement disorder. My symptoms at this point were unbearable. Physically, I was exhausted. Emotionally , I was drained . The only 3 beings that were keeping me alive at this point where my husband, my mother in law and my mom . I had no fight left in me BUT a year and a half later 13 hospital visits 2 ICU stays and 1 intubation we had an “answer”
FND with a movement disorder with multiple areas with “clonus- a type of neurological condition that creates involuntary muscle contractions. This results in uncontrollable, rhythmic, shaking movements. And since I always have to win my FND came with neuropathic pain specifically in areas I’ve had a previous injury ( we will cover this gem if I write about CRPS . Since FND and the direction I was going mentally and physically I needed to go to a speciality clinic that has an FND department it was either Mayo Clinic or The Hospital In Louisville. As a family, we decided to go to the Mayo Clinic in Rochester for a full workup since they were able to get me in ASAP * also our priest called the Nuerology Department on our behalf to advocate for us and wrote a letter of recommendation * talk about divinity . So we got me stabilized enough to fly and I had to go alone because everyone had to work and the closest relative was my sister in law in Chicago.
I spent 10 days at the Mayo Clinic in Rochester. We rented an airbnb that was walking distance to the hospital because I did not want to be inpatient just me in a hospital room alone. Again I believe that this is/was Gods plan. The Mayo Clinic is founded and operates under Catholic guidelines. There was a chapel that held mass on my floor and around the corner from my Airbnb there is St. John the evangelist co-cathedral which was open any time of day or night. All these coincidences were occurring during my religious classes as I was in the process of converting to Catholicism. So when I talk about coincidences, I really am talking about divine intervention.
I know and understand my privilege in being able to get to MN to be seen by top nuerologist, orthopedic dr’s, physical therapists and more who were assigned as my care team. I am also aware how blessed I am for all the sacrifices my family made to get me to Rochester. I also know only a few people are able to get an answer in under 2 years.
Eventually, I came back home and we started working on my treatment plan. Naturally things got worse at first for a while adjusting to the new medication and all the 1000 things we had do .
I slowly started to retreat into my bubble and I completely isolated myself from the world. I felt like a burden to everyone around me. I felt guilty for all the Get Well Soon messages because I wasn’t getting well . Also, It doesn’t help that extremely sensitive to medication, food, or even air sometimes and that can set my MCAS/CIU * (allergy conditions)off at any moment and things can go from bad to being intubated.
In the beginning, I had so much support so many phone calls and flower deliveries they all wanted me to get well soon. I wanted to get well soon and I was frustrated as to why ? I was doing everything I was told to do. Until my therapist (Cognitive behavioral Therapist) started helping me understand what Chronic meant there is no cure for any of my conditions there is remission and management. Until you begin letting the old version of yourself go and learning to adjust to Your New Normal. The battle is going to be harder and longer than it needs to be.
I still grieve for my old self, it’s only natural as human beings. But I’m also adjusting to the new me. And this version of myself is kinder, more forgiving. Grief is a very complicated it comes in waves some bigger than others. To anyone reading this whose going through a medical,mental or general hardship. Just take it 1 minute or moment at a time.