November, 2003. The spontaneous decision to turn into the nearby clinic to grab a flu shot was mindless . After all, I had gotten a flu shot many times before. Isn’t that what all americans do? Every doctor, every nurse, every minute clinic, you see flu shot stands at the state fair, you see them ready and willing to stab you with a quickie every where you turn. It just seems like we are to get in line, like robots… with the expectation that we’ll hop on the bandwagon…..or is it more like sheep to the slaughter?
I was recovered from a mild cold, and didn’t worry much about running into the clinic near my salon, and ‘checking it off my to do list’. They handed me the ‘standard’ paper to sign. After a few ‘John Hancock’s” I had without thought signed my permission, and all recourses away. If you read the fine print, you’re literally signing away your life. 15 minutes later, I was out, done. On with my day.
That night, no reaction, however, a few days into it, I was at the salon and felt my left arm acted stubborn, heavy and droopy. I didn’t think too much of it, and carried on.
Three weeks later, the arm drooping progressed, heavier and less cooperative. On December 3, I was happily wrapping presents with my husband, sitting on the floor. My ‘heavy’ arm, had now become quite sluggish. It often needed rest. I found myself struggling – a few brush strokes on someone’s hair, or pushing a dresser drawer closed, just small tasks, took great effort. It felt as though I had a 10 pound weight attached to my wrist.
I looked at Jimmy, my husband, and said, “Something’s terribly wrong”. It hit me like the feeling you get when you are about to go over the top of a roller coaster ride. It was this upside down stomach feel that was so uneasy…. I wondered if I was having a stroke.
Typical to my behavior, a researcher at heart, I pulled out our huge medical encyclopedia in an attempt to look up my symptoms (Keep in mind, this was 2003, we’ve come a LONG way on the internet since then!). My husband was quick minded enough to tell me it was way past the research, we had to hop in the car and get to emergency unit of our local hospital. In to the car we went.
My face was white as a ghost. I couldn’t think. My brain was beyond fogged. It was as if I had immediate dementia, no ability to think of anything, or concentrate on where we were going. I was struggling to breathe, slurring like I had been downing shots of liquor, just trying to be aware enough that I was in a car and help was soon.
What changed? The heavy arm became almost immobile, my left side of face became quite numb feeling, I felt faint. My slurred speech and non-cooperative tongue was plenty to get me on high alert.
We realized Jimmy’s anxiety and my fast downward spiral, mixed with the inability to hardly keep my head up in an attempt to not keel over was more than we both could do. He called 911. They met us at the intersection of the highway, and transported me into the ambulance.
The ambulance responders asked me a number of questions, taking my vitals, having me talk, checking my awareness level.
“Ma’am do you hear yourself slurring”?
“Yes, I do”.
“Ma’am do you feel anything in your left arm?”
“Yes, tingling and it’s very heavy”. As they carried me from the gurney to the bed in the emergency wing, they told me it was looking like a stroke.
Three days of testing, MRI’s, no sleep, many doctors, IV’s, etc., and they were willing to discharge me claiming it was a mini ‘stroke’. Thankfully, the neurologist was more convinced it was something else, as my legs didn’t indicate anything like a stroke, and asked me to follow up with him over the course of the next week or two. I most certainly was willing.
Who knew. The exploratory tests they put me through were unbelievable. They were so excruciatingly painful, I had silent tears pouring out of my eyes. The tests where they probe into your nerves and muscles, the zaps, etc.,
Two weeks later, I had a call.
“Had you by any chance had a shot or vaccine over the past few weeks”?
“Why yes… I certainly did! November 11th!”
“There’s your culprit” He replied….. “You had the flu shot collect into your brachial nerve, and you have what is called guillain-barre syndrome.
What? I had no idea what that meant, much less, how this was all going to play out. Now, keep in mind, I am not saying that I had no autoimmune issue prior to this event, as regular physicals, regular lab work, never really checks for any autoimmune issues, and unless you are complaining about some systems that resemble autoimmune, you simply live your life without knowing.
What came of this was one year of rehab. Weights, pushing myself past my comfort level, and making my left arm behave. It was my miniature ‘Rocky” moment (do you hear the theme song in the background?) Yet, I pushed through, and sure enough…. slowly but surely, I mastered that bad-boy.
During this year of rehab, however, I was still faking through the pain, and continued on in spite of my left arm wanting to give out on me. What I noticed that was becoming new however, was that each time I stressed, or felt pressured, each time I felt overwhelmed, my left arm would give me problems. It would start with the meaty area in the forearm just after your elbow… then it would increase and cause pain and ache in the front shoulder joint… after a bit, I’d start slurring, having the left side of my tongue become very uncooperative.
Other signs, as the next year evolved, I had extreme foggy brain. I was thinking clearly and sharply, all of a sudden I’d be stopped mid-sentence and totally forget what was being said. I’d blank out like an air-head. I would wake up with massive headaches in the back of my head, above my neck, base of my skull. It would give me ocular migraines, where I felt like I was looking through oil slicks from under water. Not a good way to be doing hair!
My knees would swell, my feet would hurt. The bigger problem evolving is I would get extremely dizzy. This dizziness was so scary, I’d have to call my husband, or pull over when driving, and many times I felt concerned I was on the verge of a heart attack. When the unknown and fear took over, I would panic to the point of knowing I had better park my car until the panic subsided.
I often would be standing at my hair chair, calmly doing a guest’s hair, and all of a sudden my heart would go way out of whack, start to beat heavy, strong, like it was going to beat out of my chest….
A few months into these symptoms, my regular MD’s office would hear my complaints, they listened to my symptoms, bobbed their heads up and down, then tell me it was ‘all in my head’ or I was given options of Zoloft, Xanax, or other pills to calm me down. These answers were not acceptable to me, as I come from a family where prescription medications complicate matters. I can take a child dose and have reactions. Rx prescriptions intimidate me in the first place.
I began to associate my dizzy spells with possible blood pressure. I purchased a ‘cuff’ and started watching my blood pressure. When my dizzy spells occurred my blood pressure would get as high as 196/114, and hover there long enough until I would attempt to take a hot bath, maybe try slow breathing, I would literally lay still and pray that the action on the TV wouldn’t increase it any more. Yes, for those wondering, we did call my ‘on call’ doctor’ many times, and yes, we even visited the emergency unit of the hospital a few times, however, once the spells subsided, I’d then take my blood pressure and find I was running 80/60!
I had a Tilt table test, in which they told me I had Vasovagal syncope, I had electrical side heart doctors tell me I had tachycardia, I had MRI’s and CT’s, we were looking for Lupus, tested for Hepatitis C. I had irregular liver results, high liver enzymes, looked for fatty liver, more MRI’s, was told I probably had MS, the list goes on and on.
Somehow, through all of these tests and all of the diagnosis’ or almost diagnosis’, I had a hard time ‘accepting’ this was my fate. I couldn’t envision myself as that person act was doomed to bedridden life.
The mind games I had to overcome, as my subconscious would tell me I was dying. I had such severe depression, I had to literally kick myself in the bum, would force myself to get out of bed, I forced myself to put my makeup on, and PRETEND I was normal that day. I am a performer, as hair stylists, especially Hair Artists and Educators are, and therefore I put on my ‘happy’ face and the world was my audience.
The darkness was very much alone, as I know I could fake the outside to (ok, ok, SOMEWHAT) look good (lol). The thought of having to ‘show up’ to work, to ‘show up’ to family events, to ‘show up’ for my grown adult children, my husband. To not be a whiney baby, to not be a complainer, I just couldn’t see myself being ‘that’ person, that had to always talk about their health. Yet, inside, I didn’t know how much longer I would have.
Life became a dark tunnel. Each day, I no longer enjoyed the sun lit days. I would do deep breathing to avoid another panic attack. I didn’t enjoy my walks, I wondered if I would survive another year. My feet hurt and the shoes I tried, the orthotics, the comfort soles, all hurt as much as the last. My knees would swell up, my heart out of NO WHERE would begin pounding out of my chest, and then the blood pressure issue, would cause me to lay away for hours and hours in the darkness, for fear if I fell asleep, I wouldn’t wake up in the morning.
I internalized, I analyzed, I researched, I prayed, I would listen to my body and try to understand what was going on. Blood test results would say I had Rhumatoid arthritis, bone density test resulted in Osteopenia. I feared taking the Rx for bone density, for fear of more reactions or any other possible side effects that would cause me more harm. I’d be low in B-12, or maybe low in vitamin D. Take supplements. I gained weight My skin was starting to look older. Sometimes my mind would be so slow, I couldn’t push myself to do the things I used to do so freely, including multi tasking. Living was overwhelming. The fight to go on, was very real.
I knew that verbalizing my feelings would fall on deaf ears, since oftentimes ‘seeing is believing’ and I was trying my best to put on my performance face. Explaining the doom to someone that is not in the ‘doom’ place, is not an easy task, so I opted to not verbalize. Those that silently struggle with anxiety, internal pain, mysterious heart issues, unregulated blood pressure, knew or leg swelling and pain, feet hurting on the bottom like you’ve walked barefoot on rocks for years, left arm heavy, slurring speech, brain fog that causes you to feel so dumbed down it’s not work talking….
This begins my story of my journey to today’s health. This is part of the situation and part of the puzzle, as I continue to write, that which will help you understand the pieces and components of all that has gone on over the past number of years. There were a few more ‘players’ to this journey, which I’ll write about as well. Yet, this should give you enough background to know if you can relate or not.
If you are one of those that can relate. I feel your pain. I ‘get’ it. Let’s see if my continued writing helps anyone…. even by a speck….