Fibromyalgia: Facts & Fun?

I have mentioned, in passing, before that Cat Scratch Fever is a real disease. Actually, anyone who has ever been scratched by a kitten has probably gotten Bartonella Henselae (look at me using medical terms lol). When you get scratched and your skin turns red around that is Cat Scratch Fever. Unfortunately for me, my kitten happened to puncture my skin in my Psoriasis, at least that's what we assume the problem was. Whatever the problem was I wound up in the hospital with a fever so high I had a seizure. My mom told them the first night I had Cat Scratch Fever, I had my blood tested and it came back negative. My blood was tested for just about EVERYTHING and it all came back negative. This led to the decision to do a Bone Marrow biopsy to check for several diseases including cancer. When your doctor says you are being tested for The Big C you take stock of your life and what you are willing to put up with. After 6 weeks I got the call that changed my life, my mother was right however the illness had already made its way to my bone marrow.

Showtime At The Apollo!!!

The treatment for Cat Scratch was a round of pills for 6 wks and I was supposed to be fine, and I was for nearly a year. I auditioned for Showtime At The Apollo, I wasn't chosen, at first... I received a phone call a couple weeks later from the tv show and was asked to appear. I stayed with my friends in New York, the last family I had worked for, so I got to see how big the girls were. Everyone came to see the taping. I got to see Billy Paul, be still my heart. Then I went home, leaving my beloved NY again. I was singing in a band, a mom, working my full-time job, and doing my best to have a social life. Two weeks after returning from NY I would catch myself taking mini-catnaps while on the phone with customers, for say 10-30 seconds. I went to the doctor and found out I had Mono. You can laugh, we all did, I didn't get Mono in high school I had to wait until I was 37 years old. I was told to stay in bed for 6 weeks.

Something Is Not Quite Right

I remember when I realized something was really wrong, I was reading a book and could not remember what I was reading from one page to the next. I loved reading. I used to have so many books and bookshelves. I told the doctor, they didn't say anything. When I got the go-ahead to go back to work I remember getting in my car to drive, pulling out of the parking lot, looking both ways however I didn't know what I was looking for. It was muscle memory and my body was so tired that I turned around and went back home. I called my boss and told her I was too tired, she told me "Tanya, everybody is too tired". I went back to the doctor, the mono hadn't cleared up. The next 6 months maybe get hazy, doctor after doctor, being told there is nothing wrong with me. That was fun. And then some doctor said three magic words and handed me a pamphlet... Chronic Fatigue Syndrome. Well, I had every single symptom on that pamphlet, the year was 2005. I was sent to Neurology. I live in a small town, I do not drive since I was trying to park and could not tell if I was going forwards or backward. I was and still do, having spatial issues. I say this to let you know my choice of doctors was limited and the neurologists did not believe in CFS at the time. I was sent to a psychiatrist. At this point, I just wanted to go back to work. I was exhausted all the time, I couldn't think straight, I couldn't remember things and I had developed a stutter that I still have when I am stressed or tired. I went to the psychiatrist, knowing I wasn't Depressed because I had struggled with Depression for years before. That was my superpower I believe. I had also had Migraines for years so when doctors tried to tell me I was simply having a migraine I could tell them "no, this pain is different and not a headache but head pain".

Chronic Fatigue Syndrome and More

I was a 37 yr old, mother of two, book reading, high-heel wearing, singing, intelligent independent woman. I remember when the neurologist told me my IQ was 20 points lower than it had been for decades, he didn't understand why I was upset. My IQ is lower now. I tell you that to let you know that though I have had this illness for nearly 17 years one of the components is Cognitive Impairment and I have moderate cognitive impairment. I have Memory Loss and Concentration Issues. Let me explain the link between my illnesses the way it's been explained to me ie. the dumbed-down explanation. I have had Psoriasis since I was a baby. Psoriasis is an Autoimmune Disorder.  When the Bartonella Henselae entered my bone marrow it set off a chain reaction with other autoimmune disorders. (For more information about Bartonella Henselae please see the Centers for Disease Control.gov website or speak to your local physician). The first autoimmune disorder that showed up to say howdy was Fibromyalgia. Many people use FM & CFS interchangeably when this is not true and I have always found them to be described as quite opposite. I cannot actually say if they are different since I have both. Doctors suggest exercise or exertion will help with FM, the opposite is true with CFS; and I have done my best to "just push through it". There is no pushing through FM or CFS! The next illness that came around was Small Fiber Peripheral Neuropathy. At first, I thought I was getting shocked by electrical plugs. I also thought I had a pinched nerve in my back, I was sent back to Neurology. Fortunately for me this time it was a disease that could be proven and he even believed in CFS. As soon as I said pinched nerve he tested my feet, broke something wooden in half, and poked my feet while my head was turned, it was very technical!

Just Say No 

Every time I saw a new doctor and got a new diagnosis I was given a new prescription. I refused to take anything that made me to woozy. I was fortunate enough to go to California and see a specialist in LA for a year, unfortunately, he wasn't able to help and, due to other issues I was sent home with prescriptions for Morphine. This was 2008. My first grandson was born in 2015. For at least that 7 years, possibly more, I took 2 types of morphine every day for my pain. At the time I was also a smoker. One day, while in bed, I went to light a cigarette and saw one already lit and I had no memory of lighting it. I talked to my doctor, we did an MRI and I was sent to Neurology. Luckily, in 2009 I had started seeing a new, young doctor. All my other doctors had been old and would retire, the new doctor told me she didn't know anything about FM but was willing to learn. She is still my doctor today. I am very fortunate that she has the same view that I do about doctors' and patients' roles. We should work together to better the patient's well-being. My doctor took me off morphine cold turkey. Really bad week. Really worth it because I can enjoy life much more now. I am still in so much pain however I am also at peace with my body and illness and we are taking it one illness at a time. I now have Psoriatic Arthritis that I take shots for, in a pandemic! When possible I give them to myself in front of my grandsons to show them that 1. Gaga is supercool and 2. Shots don't hurt. My neurologist explained my MRI to me. I have "slowing of the brain" is how she explained it. I have Alzheimer's in my family so I know it will happen, however, it isn't here today and my grandsons are.

Enjoying Life 

I teach my grandsons how to cook. I introduced them to Hamilton, on Disney+. I had never heard anybody hum to hip hop until my little blonde one fell in love with "My Shot" hahaha. FM and all the other illnesses that continue to pop up are part of my life just like having brown eyes, the only difference is some days I sleep all day due to the illnesses not due to my eyes. I have found this is the way I need to fight it, if you have FM or another autoimmune illness and you have found a way to beat it with Capsaicin or Gut help, good for you. I am very happy that there is one less person in this world struggling. I am drifting along with the flotsam and jetsam that is my lemon of a body. Next time I will post something about Spoon Theory.

By the way, I have not said this because I thought it went without saying. If you have any comments or questions please contact me.

thx,

t