Part II

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 dura, for no apparent reason. The dura, a tough, inflexible tissue, is the outermost of the three layers of the meninges, the system of meninges surrounding the brain and spinal cord.
I had already read it about it, of course, I was now that ‘research medical junkie’..but the Dr seemed sure it would not happen. “No worries” he said, as he pat my sore, purple bruised arm.
I was put in a wheelchair, last method of transport I wanted, and wheeled into a surgical room. Everything was set up in plain view. A kind, older nurse helped me position myself on the table, as I lay flat on my stomach..while resting my pounding head on my folded arms. The nurse asked me, “why are you having this done?” I said, “My neurologist wants to double check for MS but he’s sure I don’t have it..” I could see the surprise in her face. “Really? What symptoms do you have?” she asked. “Well, I’ve had mind blowing headaches..” At this point the Dr was in the room and listening…they both told me I should take Excedrin for Migraines. I thought to myself, REALLY?! will that stop this head pain?! I wondered. While the nurse and Dr. looked as though they were doing this for a hypochondriac because I was fine in their eyes. I could see it in their faces. If they only knew who they were dealing with. Lying on a table for a spinal tap is not what I chose to do on this gorgeous warm day.
They informed me that I would be numbed so I wouldn’t feel my spine. The numbing procedure was the last thing I felt, as I seen the nurse handing the Dr. different instruments and a needle I hadn’t seen that long since a horror movie Bobby and Drew forced me to watch with them..as the Dr. and nurse had a discussion..I was a little preoccupied.. their voices were the teacher in Charlie Brown cartoons to me, muffled and incoherent, I was not with them. I was hovering above my body visualizing the needles taking fluid from my brain and spinal cord. This was easy I thought…why is a spinal tap a big deal again? The fear of what they were looking for is the only thing I was suffering with.

Then! poof! It was over. I was taken on a gurney back to the recovery room, while the nurse stationed there told me about her life, she gave me ginger ale and crackers, telling me I need to lie completely flat. I found out later, she should have made me lie flat down, for a few hours before releasing me. But I was just at fault. Bobby believed I was fine. I wanted to believe this ordeal was all over. I told him, ‘no big deal’..stayed flat for a half hour, drank my ginger ale, and asked to leave.

I thought riding from Pittsburgh to Cheat Lake, WV, flat down in the passenger seat and heading straight to bed to watch TV, I would be fine in no time. Bobby and I were a little concerned the holes they made in my spine were not bandaged, but it was painless..so what could happen?

As the next few days wore on, with no word from my neuro yet, my head pain grew into an altered type of pain. Not the usual bullet blown into my head, but a new piercing head pain that now reminded me of what it would feel like if someone attempted to murder me with pounding my head with a shovel…while starting a bonfire on the top of my skull. Google spinal leak. It’s horrific. Bobby and Drew came home from the movies and I informed him of this. He was sure it was the same pain I always endured. Once again, my witchy intuition told me, ‘get to the freakin’ hospital..the rare leak has now made you a statistic..’

Once again, back to Pittsburgh, we went. The dire emergency from St. Clair’s reaction, told me this leak was dangerous but naturally, before the rush, I was able to research it while lying at home in pain, so I knew I was in immediate danger. Bobby called ahead..as I looked out the window..and the hospital instructed him to pull up front. Once there, a nurse was waiting for me with that damn wheelchair. I was rushed into a room of chaos. Twenty gurneys lined up with everyone in serious need. STAT! STAT! is all I could hear.

As I lie on the gurney, I felt so out of place. I see so much blood and sickness. Why am I here? Is this necessary? What about that excedrin for migraines? Nah..I told myself..you have that famous leak he told you would in no way happen. A nurse walks over, “Hi there..” as she was studying me and wrapping my arm in the all too familiar dreaded rubber for more blood..god, more blood work..her face became brighter..while she would glance down and read my file. “Do I know you? Your face is so familiar?” she asked me. Once again, my good ole training from the school of Linda Morris kicked in. “yes, you look familiar too..” I said..while smiling. (she kind of did, but I wasn’t sure..I just want who has the medical tools to like me and get me out of this pain..)

While I wondered what these three hospitals are doing with the LARGE amounts of blood they have taken from me, a thin, beautiful, doctor came in with a demeanor of a thug. The no nonsense type, but I understood. There were twenty other gurneys holding people in much more of emergency need than I. She went over my type of pain with me, the spinal tap, how I felt, she informed me I had a fever through the roof. Then she wondered why I wasn’t crawling on the floor and how I just stood up to get on the gurney in the room. I said, “I don’t know. Maybe because I am accustomed to this head pain..but this is a different head pain. It’s excruciating to lift my head.” I answered. “Okay, listen, you have a spinal leak, it’s dangerous, I am going to insert your own blood into the hole they made at the LP..okay? you ready? Sit up and lean over.” the Dr. said. As the nurse held my hand and told me to squeeze it as tightly as I wanted.

No numbing. The doctor picked up what looked like a turkey baster, filled it with my blood, and then I learned WHY a spinal tap could be so very painful. If you ever have to stop a spinal leak, all I can compare it to is childbirth without drugs. I know that because I got to St. Clair too late for drugs, in 1993, to give birth to Drew. (*even though all us ladies know any childbirth is painful..) Complete agonizing pain to repair a spinal leak. Just agonizing. However, the thuggish Dr. told me if it was a leak, the pain would immediately stop once she done this procedure. Sure enough, the familiar three year old bullet in my brain pain was all that was left. My horror movie spinal tap leak pain GONE.

Off to a room they put me to ‘recover’..once again, here came my ginger ale and crackers.

This time, when they said I could leave. I asked, “Are you sure? I can stand up outside, get in the car, leave?” — The nurse had a good laugh. While I told myself, “I can’t wait to get home to my trusty medical books and read more about this..holy crap, how much brain fluid did I lose?!” I wondered.

On the way home, my first useless, young Dr. called to set up to begin ‘helping me.’ I had a good, delirious laugh..

Now it was time to get home, rest, hug Drew, and wait for the neurologist to call me with the spinal tap results…

About Donda Danforth

I am the product of lifelong assorted novels in the works. Amateur music producer with official background. Long time freelance writer and ghost writer. Working to tell the truths and tales to the abuse and survival of cancer, Lyme disease, misdiagnoses, adolescent marriage, narcissistic abuse, and the humor that accompanies such a diverse list.
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2 Responses to Part II

  1. Dan Reinhart says:

    Donda,

    So had no idea the storm that was going on in your life! You will be in my prayers and always here for conversation, i know we have not really been the closest but definitely close enough to call you a good friend. You know sometimes helping another person in one aspect or another will help you without you not even knowing! Obsessing over medical books and drowning your mental state with obsessive thoughts is not the answer! No matter what your sickness may be, you are still here! Why waste a minute on figuring out whats wrong (not that it’s not very important) but living today like it’s your last. Without today there is no tomorrow, so make it the best!

    So glad that you Courtney and I are talking again…unfortunately i have been swamped lately and have not had the opportunity to talk much but i know she is well and really, that’s all that matters!

    On another note…you are a truly amazing writer!! i wanted your blog to go on! Will you write a book for me!? It would be a good one! Well i gotta get back to work, but i am always here, never too busy…well most of the time, to talk…text me when you get this please!

  2. Gigi Green says:

    Wow Donda, you are amazing and might I add one hell of a writer. Post more please soon, I am so worried about you. Praying for you since I read the fist post, love ya. Remember where you come from, and what you have in abundance, love, strength and Morris blood..

    Gigi

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