After my useless phone conversation with my Doctor. I miraculously went into fighting mode. I was always a big reader .. but this brought me to become a research junkie and obsessive with medical journals. I never read ‘Joe Schmo’s blog’ (no pun intended) .. I focused on the experts. And as much as I wanted to believe I did not have MS, I thought I should read about what was said to me. Period. So, the first thing I looked up online and in the libraries was anything and everything on Multiple Sclerosis. & The very first thing I googled was ‘How to Help Multiple Sclerosis’ .. I found an amazing doctor by the name of Roy Swank. He had 55 years of experience with reversing or repairing the disease by what food was ate. Ludicrous! I thought. How can food make such a difference to an incurable disease? But I read, read, and read some more. Before I was ever told I had anything in particular, I’m still not sure what I have, but I started the Swank diet. No red meat, not going over 15 grams of saturated fat a day, no chocolate, no dairy, egg whites only. Many, many rules. I was never a big eater, so I was fortunate enough and able to take the diet seriously to accept the changes.
Bobby was old fashioned enough to hate it right off the bat. “You can’t go on eating like this! You’ll die!” But I kept telling him and myself, this amazing man (read Swanks bio) had proof. He had concrete evidence and that was good enough for me. Whether I had it or not, they suspected it, so I should start the one thing I could find, that could help me and our family.
During this time my oldest friend, Jacqueline, had her family refer a neurologist to me in Pittsburgh. I immediately set up an appointment. While still never hearing from the first useless young doctor on the neuro they wanted me to see. Little did she know I was done with her after our phone conversation and fruitless efforts with her for far too long.
My stress waiting for the Pittsburgh neurology appointment was absolutely horrible. My head hurt more than ever, my arms burned to no end, my legs hurt so badly I had to apply bags of ice to them. The stress was mind blowing. Believe it or not, the unknown, mentally, was worse. *& I have now come to discover stress is a killer to someone with lesions on their brain.*
All the while avoiding calls, texts and emails. The last thing I wanted was for others to know I may be sick. A downfall to being private…others knowing what misfortunes you endure.
The day finally came. I went to meet the neuro in Pittsburgh, with my MRI results in my hand.. and even though my arms looked like a drug addicts from the previous, much amount of bloodwork the hospital took from me, they seemed to find more veins and spots, over top of the purple & black bruises, and take some more. Much more.
Then the all important man himself walked in the room. Youthful looking, dressed in golf garb, and smiling from ear to ear. Eager to meet me and show me his comedic talents. As I still held my own and was who I learned to be from my mom, regardless of what was really going on in my mind. A lady, private, pleasant, charming, calm.
The first words out of his mouth. “Well, I have looked over your MRI..” As I was on the edge of my seat, trying to sit up and not show the awful Morris posture I have, fearful to give him the impression I have a disease and not just a crappy back! While looking over at Bobby, the love of my life since I was 17, smiling at me in confidence, that I was fine. The neuro said, “I’m going to do some strength tests..” And we did. I passed. “Now let me see you walk across the room.” I protested, “Um..I have horrible posture, but if you seen my Dads side of the family you would know I get it honest..” He laughed and made yet another joke. Then he went over symptoms with me. When I told him about my head pain he waved his hand and shrugged it off..’that means nothing..’ he said. I then mentioned the pins and needles. He again, “oh that can be because the band on pants..means nothing..” As he considered it all meaningless, I thought this was all one huge mistake on the medical community part. But again, don’t treat me like a moron and tell me jokes, I thought. Pants causing pins and needles for three years. Frustrating.
Finally, he made his announcement, “I don’t think you have MS. I just don’t.” I could see the relief in Bobbys face but my instincts told me, yet again, something is being missed.
I asked him, “So what do the lesions mean?” He replied, “Oh they could be from an old infection. Measles. a flu that never cleared up. Migraine disorder…many things..but I don’t believe you have MS. But I will give you a spinal tap to reassure you.”
As Bobby and I left the office, the feeling of a new life I was given was overwhelming. Yet, my gut told me once again, “they are missing something..this isn’t right..” I didn’t know why..but it felt off. STILL my release from hell and hearing those words from a medical professional who specialized in brains was good enough for me! As I walked out the door, I felt as though I was given yet another chance to the many times I came close to an end, I kissed a leaf of a tree blowing in front of my view. Bobby laughed. We were thrilled.
My Mom always said, and we all would crack up, “DondaLin can fall in shit and come out smelling like roses..” Pretty raunchy, I know, but if you spent time around this elegant, feminine woman, it seemed okay for that to come out of her mouth? Only her. Well, that phrase was what I heard over and over in my mind. And, I felt as though I may have missed a very close call to something I did not want to learn about..let alone take on. Although, I told my steak loving husband, I would stick to the famous, healthy Swank diet..just in case.
Now, I had to get through the lumbar puncture.
The spinal tap (LP) seemed like a lifetime away. But, Bobby had to leave for work and I was left to my obsessive reading..while keeping it all from Drew and other loved ones. While believing I can’t dare tell others..they will see me as sick. God forbid. I had too much fear for me to go on as I had. I could not be the friend who was always there for others problems, the happy go lucky life of the party, the positive one that always had a smile for others..while looking for and playing endless music. I just stayed quietly, at home..reading medical journals, researching how to improve on an incurable condition, starving, studying about supplements, while Bobby and I discussed the importance of moving Drew to Pennslylvania .. just in case she needed help while I deteriorated.
Again, if you know nothing about MS, you believe with all your heart, the luxury of walking and seeing will be taken from you.
I had my choice to where I wanted my spinal tap done. Naturally, I chose the hospital I trusted the most..where I gave birth to Drew..and where they treated me like Elizabeth Taylor. Mom always said, “you got that treatment due to your blue cross..” — Probably. Lord knows she was never wrong.. But..nevertheless, I was treated like a movie star there. If I had to get a needle as long as my body shoved into my spine, I want to go where I felt the safest. St. Clair.
The time had come. Bobby and I checked in..as I looked around I found myself in a whole new world. The all too soon, familiar smells and sounds of a hospital that I was not ready to relive since being in hospitals so often from the deaths of my parents, I calmly looked around and all of us strangers looked at each other with the curiosity of why we were each there. It was a beautiful May day outside, my best friends were dressed up – at a Dance recital, I was receiving texts being invited to barbecues..while a nurse was wrapping my arm to find veins..for the third time, third hospital, ten tubes of blood from my already sore, black and purple arms.
The tall, handsome doctor came in and went over the procedure with me..then warned me the rare chance of having a ‘spinal leak’..a medical condition in which the cerebrospinal fluid (CSF) held in and around a human brain and spinal cord leaks out of the surrounding protective sac, the