I am here!! I have arrived a bit battered , bruised, and a little worse for wear,.but I am still standing!! I am about to embark on a subject that has remained "off limits" in my grand scheme of what I have called, my life. I have placed a permanent limit on the topic for nearly 30 years, and it has created many pet peeves, that only I notice in others actions. I also giggle at times, at my past 4 years of experience, and somehow think, I created my own karma. (I didn't,..but it still makes me giggle)
I still have people today that say,. "Why didn't you tell me you were so sick?' Well, quite frankly, I have a list of reasons. One of them is , people want details. Huh,. no! People want to help. You couldn't, of course no one knew this at the time. People also want to know they are safe. You were.
The worst part, people wanted to also share their experiences, and on more than one occasion, I would be standing in front of them, politely listening to their every detail, sweating, losing color, losing strength,..clenching my stomach, with no end in site. Ultimately, people would step to the plate and arrive at my office with the "sure cure" item, broad smiles, great intent, and stand over me, waiting for me to eat, drink, take whatever voodoo pill or concoction they had discovered via the internet, or from the ever ready health section of the National Enquire. Now for the other reason and the main reason.
My Mother, enough said,..............................................wait, there's more!!
I have spent the last 30 years of my life, on a weekly basis, listening to my mother, describe the details of her life from the recliner. Those details always included the latest diet, not just any diet, but the mack daddy, know all, be all diet. This diet always helped her lose in 25lb increments.( I once made the statement, "you must be a negative 315lbs by now." she didn't speak to me for months) My Mother was truly convinced, that she was "toxic" according to the latest articles, or news reports, or worse,.some article hidden in the back of (you guessed it) the National Enquire.
With a voice of authority, my mother would give vivid details of the shape, size ,color, and frequency of her bowel movements. She used words that would only be equal to an expert describing the swirls and color contrast of a painting by van Gogh. She would then say good-bye as she passed the phone to my father, who would continue the story, but from a victim/witness/plumber point of view. I would sit in horrified silence, making promises to myself, that I would never , EVER,..well,.. just this one blog, EVER,..speak this way. True story, end of the story, now you know.
The last bit of advise my physician from the Mayo clinic said, "Take probiotics!" That is where the information highway ended. I was left with google, and 30 years of my mothers advise echoing through my head. I pretty much led a paleo lifestyle , and I felt great for 6-8 weeks after leaving the Mayo, then slowly but surely, physical weakness began in invade my body,then brain fog, confusion, forgetfulness, and then to my panic and horror, the diarrhea returned. So I bought probiotics, and they are NOT very affordable.
Now they are readily available, on shelves everywhere you go,They even have unknowns throwing bottles of them around a plane in commercials. How did she get them past security?? Can you imagine explaining this? In spite of hollywood stars displaying their over stocked pseudo-fridge with probiotic yogurt, I read with great disappointment, that shelf safe probiotics barely make it past the stomach,some of it does, but I am not sure how much, since they are measured in billions of units.
I did ,....remember,..something,...my Mother said,..ugh. You have to buy the probiotics in the freezer section in spore form. The spore form, by-pass the stomach and "bloom" in the small intestine, and of course, spore form is 10 times more expensive then shelf safe. I had to make the plunge. (no pun intended) It worked, I was good,moving forward, feeling wonderful,then it stopped. Hello google,. I found an article that said, "to much probiotic could be toxic from over use" ,WTH. I certainly wasn't over using, less is more in my book,so a 45 day supply could easily last me 90 days. after weeks of study study, research, and more study, (did you know they are doing stool transplants in europe?" really? ) I came across an article that mentioned one small, but vital detail,..inulin. Not insulin, INULIN. I have never heard of it, and neither had my mother. Apparently it is really important. I could use supplements, but I am very against man made, anything. At the bottom of the article was a reference to natural forms in inulin,sunchokes, or jerusalem artichokes. So I tracked down where I could order some, and they do not ship them until october (It was February at the time and I didn't care about optimal planting times,...geez) and there was a waiting list . Of course this year was already sold out!. This stuff must be important!
I had already returned to my neurologist with my story of the signs and symptoms slowly making their way back into my life. He didn't have any suggestions, beyond what I already knew. This is NOT the part, where the hippie massage therapist begins to bash the medical community. My Neurologist showed amazing compassion for someone who entered his office, looking a bit crazy. I utilized every person available, I did "body talk", Reiki, tuning forks, rain drop therapy, massage, ingested charcoal, herbs, essential oils. I did yoga, and mediatated, and repeated "Ommmm" over and over again. PLUS HAPPY THOUGHTS! Don't forget to change your mind so you can change your life. Life was good, as long as I had a can of air freshener, and enough toilet paper. Yep,..happy thoughts.
Some in my world believed I was having a past life experience,..something in my core self that I was refusing to deal with in this life. You and you alone, are the only one who can come up with that story . Then there are the ones who believe, and this included myself for a long time in my life, that every disease is self inflicted, brought on by self hated, or by some fact, like not being breast fed as a child. My favorite,. I brought this upon myself for,. attention,.trying for disability, or because I simply didn't want to get better, or had decided at some time to just throw away my life, I WAS CO-DEPENDANT so I,. Mmmmmmmmmmmm Ommmmmmmmmmmm OOOOOOOOOOOOOOOOOOOOOOOOOOOooooooommmmmmmmmmmmmmmmm,..NOTHING! Maybe for a day or two, I felt better. It was not enough, and certainly never a cure, and this was MY world.
Now hear this! if I were going to attempt to gain attention or have my ego over inflated, I would pull a mid life Brittney Spears and shave my head, or I would buy tight leather pants, that would force my muffin top to have a muffin top. I would allow my hair to lock into dreads, and tie, blue dyed feathers and little bells and charms into them. I would get a tattoo, and buy a HARLEY!!! Get it? In no way, would my mid life, attention seeking crisis, involve even a MENTION of diarrhea.
My neurologist saved my life. He did everything in his power to discover the cause. He was also brave enough to step out of the box, and quick to get me to other physicians who he thought could help. I had read my chart, even he was convinced it was stress related and so did I , but he never gave up on trying to improve my quality of life. He was (still is)professional, kind and politely STUBBORN. I didn't choose him because I needed a new friend, I choose him because I was well aware of his 20 year reputation and mad skills!
This time, however, he was out of answers, and I was exhausted asking for more help. so I limped home and cried for the rest of the day.
So if I was accused of attention seeking before, now it simply looked like I had attached to all of the excitement, and attention I had just received, and I was there for more! My Neurologist never said so, he wouldn't, to professional, to kind, and always willing to try and make a difference, always available if I called in a panic. I at least had him in my corner.
I admire people who are their own hero's, leaping tall buildings in a single bound. I am pretty sure he has a red cape hanging behind the door of his office.
None the less, here I was, about to go under, with no explanation, and no way out. I sat in front of my computer, still crying, and on my facebook page, a link appeared
Dr Terry Wahls, TED.com "minding my mitochondria" This was a turning point for me,. that has led to the last year of growing my own food, blending and setting the pace for my return into life. Go look it up! I will try to pull in a link later. I bought her book,and I suggest you do the same, Multiple Sclerosis or not,it is across the board, good advice, that brought me to where I am today.
Through many suggestions,. I found a product called Green Vibrance. 12 strains of probiotics,(frozen spore form) plus 1 Tbsp is equal in nutrition to several trips to the salad bar. Then as quickly as I found out sunchokes were "out of stock" I came across them at a Whole Foods. I bought all they had,....and I set off to heal myself. Here is what I discovered. Never , EVER,. ingest something that you have never had, if you have gut issues, unless you are prepared to re-enact the scenes from the movie "Alien" . Need I say more?
Go slow, be kind to yourself, and don't panic. In a few days I tried again, I cut a small sliver of sunchoke off the bulb and put it in my smoothie, ok, that was better, and slowly increased the amount from there.
Here is what I have researched about sunchokes. They are what make probiotics "stick" to the lining of your gut. Otherwise, you are throwing your hard earned cash down the drain ( no pun intended) Your whole body is an energetic system that works on a give and receive basis. I had been so sick for so long, this very simple fact eluded me.
It has taken awhile, and I am in constant contact with my physicians. I don't walk this alone. I also don't fill my body with foods that can feed the bad bacteria in my gut, ie sugar, processed foods, legumes, grains of any kind, soy and dairy.
If your doctor doesn't understand what your trying to do, find another doctor, or a functional medicine doctor in your area, or a GI doctor, who can monitor your progress. Seek help if you feel you are in way over your head. It is not your fault our food supply is full of all the above mentioned.
I returned from the Mayo clinic, knowing full well, that I was negative for food allergies, but in no way ,shape, or form, does this mean I am Not reactive to certain foods. It also means that much of what is considered safe to eat, in the long term,will cause disease. I am also firm in the belief that I should not ingest low nutrition, high calorie foods, like the above mentioned. Look up paleo, look up "Minding my mitochondria" look up Dr. Terry Wahls TED.com video
Torture your family and friends with your condition, and repeated conversations, (or as much as you, or they can tolerate) It may one day , save their life, or yours, just like my mother did for me.
Never stop trying to move forward, never, EVER. give up.