If I was driving, I would think I was going crazy with my self talk. Panic that I was behind the wheel and could just flip out and turn into someone. Every once in a while I’d see my hands on the steering wheel and wonder why my mind saw an illusion of a 90 year old’s hands.
My ability to multi-task was literally gone. I tried explaining it to my physicians,, it was if my adrenal glands were totally drained. I had lost the ability to think FAST, and now, almost in slow motion, was struggling to even make decisions. This, is what ‘they’ call ‘brain fog’.
It was more than mental though. i thought I had early onset dementia. I would stop mid-sentence and forget where I was going in conversations. I’d not be able to think sharply. For DAYS I would be sluggish, more clumsy, when stressed or had too much on my daily calendar, I’d feel my left arm get extremely heavy, like I had a 10 pound weight strapped to my wrist.
Intermittant shooting zaps in my feet at night, a weird snap of a ‘zap’ in a right shoulder near my neck.
Waking up in the morning, I’d have more often than not, a severe headache in the back of my skull, the top of my neck in the back of my head. I’d feel drunk, or at least dizzy and off balance.
Slurring. It was like I had a fifth of tequila. My left side of my tongue would act like it had a shot of novocaine. When asked, my friends said they couldn’t hear my slurring, but I sure could!
These were just SOME of the symptoms. I’d come with a list, as my physicians watched my osteopenia go to osteoporosis. My D and B12 were low. My ANA (test for autoimmune) was always high.
When I felt my ‘episodes’ coming on, I’d know I was in it for 4 days. My first reaction would be to grab my blood pressure cuff… sure enough, I was either 194/114 ish, or I’d be 80/60. Just no sense at all, especially since my regular blood pressure prior to this was a standard 120/80.
The doctor’s office sent me to specialists one after another. MRI’s, CT scans, trying to understand if I had now become an MS patient, or was my heart failing. Did I have lupus? Lymes Disease? Electrician side cardiologists, rheumatoid arthritis specialists. I had ONE doctor tell me it was ‘all in my head’. That was the biggest insult of all.
I am one of those that can FORCE myself out of bed, even if I don’t want to. I am a survivor, a performer, one that can make myself look good in the midst of feeling miserable. I can ‘fake it till I make it’ as a general rule, which has it’s qualities…yet, my doctor that was most often seeing me said one day, “You know Karen, you usually look good, because you have that personality that you try to make an effort to always have your best foot forward, so it is hard to know how sick you really are, especially when you are not LOOKING the part”.
Well, that was not a good thing, I suppose, as I don’t know that doctors knew how seriously LOW my quality of life was sinking. One evening I cried to my husband, that I had sunk to an all time low of less than 30% of quality life. I was so frustrated…. for SEVEN whole years…this was what I had gone through. The merry go round made no sense, there was no method to the madness, I simply had no idea what was wrong…
Then, one day, a magical, amazing moment happened. I was supposed to go to an autoimmune specialist, and my insurance denied that particular office. They were not in the ‘list’. So, I had to settle for the second doctor on the list. Waited three weeks to get in to see him, Dr. Kopp had absolutely NO bedside manner. I came locked and loaded with my lists, my analyzations, my thoughts, and he wanted nothing to do with any of it He quickly took charge, in his ever-so-dry humor manner, and told me this first appointment was just for him to ask me questions, and he only wanted a ‘yes’ or a ‘no’. I was blown away. How could this doctor not want to know what all I had been going through? Was this a waste of my time? His humor was absolutely horrible!
Bottom line, he made a decision to run some blood tests. Yet again, the nurses always had a difficult time finding the right vein and not bruising me for days.
Next appointment, he had promised me, would be my turn to talk. Yet, he took charge again, at the beginning.
“Ms. Stevenson, I can tell you, we had one thing that I feel may be the culprit.”
“What is it, Dr. Kopp?”
“You are allergic to Gluten products, the protein in gluten to be exact. It’s called Gluten Ataxia”. He nonchalantly replied.
“What do I do?” I asked with wide eyes that we could be on to something…
“Stop eating it!?
Lots of silence.
ARE you Kidding me? He had gone on to explain that some people test negative for celiac, but there are many non-celiac reactions to gluten products, and mine fit right nicely in the gluten ataxia category of reacting neurologically to eating the protein in the gluten. That means, that each time I drank a beer, or had a sandwich, or had pasta, I was reacting neurologically, which meant, each time I had one of these now-forbiden items, I was having 4 days of issues. Now, think of this. One day a beer, which is four days of reacting, then the next day some pasta, then a sandwich the following day, and another beer with pizza, the next day… I didn’t have a CHANCE in hell to ever get past these feelings of drunken weirdness that caused so many issues.
Here’s my question. WHY do doctor’s not THINK about what you EAT as a possibility of how you are feeling with all of these invisible reactions?
Could it be that had this been discovered 7 years prior when it first came up, that I would not have evolved to this horrible osteoporosis now? Would I have not had the depression, the feeling of doom, the constant nagging feeling that I was going to die early or have early onset dementia?
Why are we not integrating what we put IN OUR BODIES with what is the reaction in our health? Do doctors’ not learn that if I ate birthday cake every day all day long for 3 months, my body may start to rebel and I may have a sickness come on from my lack of nutrition? How can this be that we are not TRULY understanding whole body health, with consideration as to what we are putting in our guts, here in american where we have fast $1 menu’s everywhere, easy access to massive soda’s with their tablespoons upon tablespoons of sugar? Why is it we can eat this GMO laden bread and not wonder what it is doing to our bodies? I am blown away that so many women, more than men, have these issues, where they are silent suffers.
There is a connection. Once you understand that, and take your health into your own hands, you feel and see the connection. You become aware, that if you stay away from certain foods, or write a journal or diary of your food consumption, there could be a correlation of what you are eating and the miserable reaction you are getting. Hives, overly tired, gassy, inflammation in the gut, dizzy, panic stricken, joints hurting, depression…all are possible signs that you need to turn your eating habits around. Maybe it’s TIME we take our health and the food we put in our bodies seriously. It’s not about ONLY taking a pill.
I am not saying this is a cure-all for everyone. Yet, I am saying, shouldn’t there be an awareness? What IF?