Having hit something of a block while finishing up my latest book, I found myself visiting my past. I have had quite an interesting life. In my very early years (those delightfully dark days of teenage-dom) I didn’t anticipate living past twenty-five. That may sound morbid but I was a rather gloomy teen.
There were times during my first violent marriage when I thought I just might be right. After passing the magical, mystical quarter century prediction it occurred to me I should take advantage of the bonus years I had acquired, make like an egg, and beat it. So, with three small children in tow, I ran full tilt into my future.
While attending college full-time, working, and raising those three kiddies sans spouse I hit a huge block. The first episode was a loss of sensation down the left side of my body from my neck to my toes. My initial thought was I had pinched a nerve while toting around one of the large and ponderous video cameras we used in my TV Production class. However, things got worse and I was soon dragging my foot like a recalcitrant toddler who refused to go to bed.
After a primary care doctor appointment, I was referred to a neurologist. He was a very upscale doctor who cost more in one visit than I made in a week. His tentative diagnosis was that I was experiencing a transient ischemic attack (TIA). However, he felt that to be certain I should have a CT scan. I decided that was a bit more than I could afford at the time and opted to forego it.
About a year later something very different hit me hard. As I mentioned I was working toward a degree in Media Arts focusing Television Production. I wanted to be a TV News director or journalist. Either way, I was looking at a high-energy job that would require terrific stamina and good vision. So when I began to lose vision in my left eye I was understandably concerned. What began as blurriness rather quickly escalated to excruciating pain; a pain I compare to having a toothache behind my eye. Every time my eye moved even a little I experienced intense pain. This made sleep impossible because as soon as I entered REM sleep I would be jarred awake by the stabbing behind my eye. By March 17th I knew I had to go to a doctor. I didn’t even start at a primary care doctor; I went directly to the Manhattan Eye, Ear, & Throat Hospital. A quick examination resulted in a diagnosis of retrobulbar optic neuritis. That’s a mouthful. Based on the fact that I was in my early thirties and female, led the doctor to opine I might have multiple sclerosis. I had no idea what that was and like most people at the time I thought it was related to muscular dystrophy. She put me on prednisone, a synthetic corticosteroid that is an immunosuppressant drug that is an anti-inflammatory drug. No one told me about the possible side-effects of the drug.
“There are mild to severe side effects associated with prednisone use. The side effects occur more frequently with high-dose or long-term use of prednisone.” (http://arthritis.about.com/od/prednisone/a/prednisonefacts.htm)
Possible side effects include:
- Sodium (salt) retention
- Fluid retention
- Weight gain/Obesity
- High blood pressure
- Elevated blood sugar
- Elevated blood fats
- Potassium loss
- Muscle weakness
- Puffiness or moon face
- Growth of facial hair
- Bruising easily
- Thinning of skin
- Poor wound healing
- Stomach ulcers
- Aseptic necrosis
- Irregular periods
- Rounding of upper back
- Growth retardation in children
- Increased appetite
- Psychiatric issues (depression, mood swings, personality changes)
The doctor discussed possible causes for my condition. None of them were good. Optic neuritis was most commonly associated with multiple sclerosis (MS) or other autoimmune diseases. However, it could have been caused by a tumor, viral or fungal infections, hypertension, or even some toxins.
After two months of taking prednisone, I was given a lumbar puncture (a nice name for a spinal tap) where some of my spinal fluid was drawn for analysis. At that time I was also scheduled for a CT scan. The prednisone had given me almost immediate relief. I wasn’t even certain I wanted to undergo yet another procedure. The desire to know definitively what was wrong with me won out and I scheduled the scan at the Cornell Medical Center which was a part of New York Hospital at that time.
None of the doctors had asked me about drug allergies. No one mentioned the possibility of an allergy to the dye used during the scan until I was seated in the waiting room filling out some paperwork. At that time a young doctor asked me about my allergy test. When I told him I hadn’t had or been asked to have an allergy test. A small frown creased his forehead and a tiny alarm went off in my head. He proceeded to explain that about one in forty thousand people had a serious reaction to the dye that would be used. After confirming I was not allergic to fish he had me sign a release.
The signs and symptoms of an allergic reaction include: (http://www.healthguideinfo.com/drug-latex-allergies/p95398/)
- Facial swelling
- Shortness of breath
- Difficulty breathing
- Rapid breathing
- Hypotension (low blood pressure)
The allergic reaction to a contrast dye may be immediate or delayed.
(See more at: http://www.healthguideinfo.com/drug-latex-allergies/p95398/#sthash.U9knqoLN.dpuf)
I honestly wasn’t concerned. These were doctors, nurses, and technicians were highly qualified; they were employed by the Cornell Medical Center. Cornell University is a highly rated school. We all make mistakes.
Stretched out on a table, the room bustling with activity, a nurse prepared me for the injection that would send the dye coursing through my system. I’ve never had a problem with needles; injections or having my blood drawn has never bothered me. The injection didn’t bother me. Within minutes something did bother me. I began to feel hot; significantly hotter than normal. When I told the nurse she assured me it was normal. According to all that I have read, that’s true. This was followed by the strong taste of iodine in my mouth. Again, I was reassured this was normal. This is also true. But then I began to feel what I can only describe as strange. The nurse patted my arm reassuringly. That was the last thing I would be completely aware of for a while.
I stopped breathing. I inhaled and that was that. I felt as though I was floating away. This disconnected not entirely unpleasant sensation drew me away from my physical form and I seemed to be suspended above the room gazing complacently down on a hive of activity. This all seemed to take place in a short period of time. My next fully aware moment was when someone was trying to smother me with a plastic cup. In fact, it was the nurse attempting to place an oxygen mask over my face. I was trying to push her away, certain she was trying to suffocate me.
The memories of those moments and the hours following are vague. I know they decided to go ahead with the scan. I was told emphatically that I was never to be injected with the dye again and must always inform physicians of my allergy. I left the hospital with no mention of any possible after effects.
My best friend had been in the waiting room and she was able to tell me what happened outside the room. She heard them call a “Code Blue”. She watched as what she calls a “Crash Cart” pushed by a running technician sped past her. He was followed by two more white coated hospital personnel. At that point, she said she knew it was me.
In retelling this story I realize that when I stopped breathing I had essentially died. I have no answer as to how long I was breathless, if I was administered any resuscitative drugs, or how serious the staff considered the event. Regaining consciousness after something like that didn’t leave me much of a mind for asking questions. I regret that now.
The results of all the tests and exams left me with a tentative diagnosis of multiple sclerosis. I was relieved. I did not have a tumor, lupus, Parkinson’s disease, nor had I had a stroke. Somehow MS seemed the least debilitating of all the possibilities.
That was about thirty years ago. Over the following years I had exacerbations, was hospitalized once, had to use a wheelchair for one event that required a lot of walking. Over those years I also had another baby, graduated although not with a Media Arts degree. Instead, I have a degree in Interdisciplinary Studies with Concentrations in Psychology and Sociology. I worked in retail, as a daycare teacher of three-year old children, as an after-school childcare Director and teacher, Interim Director of a daycare, a telemarketer, and thirteen years as a social worker and Supervisor of a State regulated regional work readiness program. I was a member of former Tennessee Governor Phil Bredesen’s Families First Task Force, a Domestic Violence Advocate working with the Knox County YWCA Enough! program and the Knox County Family Justice Center’s Voices program. I raised four children to adulthood, now have five grandchildren in whose lives I am very active, and am happily married for the second time for almost fourteen years. I enjoy photography, writing, and extensive traveling.
I have been fortunate to have had a wonderful neurologist who has kept me on track and functional for about twenty years. Dr. Michelle Brewer of the Knoxville Neurology Clinic and, currently, Dr. John Dougherty are miracle workers in my book.
At the very end of 2013, I finally realized I was wearing out. I was traveling 225 miles round trip daily to work at least eight hours a day as the supervisor of a program. I opted to retire and do something I had been toying with for most of my life.
In October of 2014, I published my first book, View from the Sixth Floor: An Oswald Tale, a romantic thriller based on the assassination of President John Kennedy. In May 2015 I published my second book Riddle, a romantic thriller. In addition I have had short stories published in two anthologies with two more due to be released this spring, I am also completing my third full-length book, Stolen, another romantic thriller about a young Gypsy girl who learns that her mother was murdered while in the Witness Protection Program. With the involvement of a drug cartel, the FBI, and American Gypsy life, it is an exciting fictional tale.
If you’re reading this you also know I am an active blogger and book reviewer. My point is there is life after a traumatic diagnosis, an abusive marriage, and also poverty because for a while I was darned poor.
My advice is to never give up and always follow your dreams. We have one life to live. Live yours fully. Don’t find yourself in those last few minutes of your life with the words “I wish I had…” on your lips.
12 thoughts on “As I Get Older: My MS Story”
You are an inspiration, Lizzi.
Thank you so much. You’re very kind to say so.
You are most welcome.
Thank you for sharing this. Hugs, my Internet friend 🙂
Too much that’s too tough – made me weepy 😦 May each day bring you more success with your projects and time with your lovely family.
Thank you very much Jean. There’s so much in life to celebrate we shouldn’t waste time sweating the small stuff. 😉
You’re an amazing lady, an amazing author and an inspiration. ❤
Thank you so much.
That story is amazing! I am proud to know you! I will reblog this on my blog and call it an interview! We couldn’t do better if we started from scratch.
HUGS! I didn’t realize I had known you and Neal that long! http://www.MaryMarvella.com. Feel free to comment there, if you have the time.
Thank you so much Mary. Yes, you have been a big part of our lives for many years now. We’re like the Three Musketeers, one for all and all for one! ((Hugs))
Reblogged this on MaryMarvella and commented:
I have known Elizabeth (Lizzie) since before she married her current wonderful husband. Her life is a lesson in not taking life lying down and s;pitting in the face of the problems life throws at us.