I am nervous to post this and apologize if I sound at all negative in this post..I'm trying not to be but I've had a real string of bad luck and bad news the last 9mos.....I am actually surprised I have not fallen into a depression over all this. ( I thank my gluten free diet for that:)). I am just going to write what i am thinking and feeling RIGHT NOW and hope no one JUDGES me for it!
Well as per my last post, I got an MRI...it was Not Tarsal Coalition. It showed that I have unexplained Tenosynovitis in multiple tendons in my foot and ankle..(probably the same thing going on in my hip).
Dr. McClanahan had to tell me that he no longer knew how to help me and sent me on my way with a referral to more foot doctors:(.
I didn't go. I started to dig DEEPER.
If I have tenosynovitis and I've been resting for over 8mos then something at a deeper level is going on. Most people get tendinitis or tenosynovitis from over training....I have pretty much sat on my butt the last 9mos.
My husband started to question "Reactive Arthritis" which is caused by a chronic infection in the body somewhere....this would make more sense......
I did alot more research and got some tips from some other people suffering from my same diagnosis and symptoms.
I went to the doctor 2wks ago with 2 pages of notes, questions and tests that I wanted to run.
I asked him to check all my vitamin levels, TSH, T3, T4, Reverse T3, as well as test for Lyme disease, chronic infection and a gene called the MTHFR b/c someone had recommended I do that.
Thank goodness they did, b/c my results came back on thursday. I tested positive for infection or chronic infection, high Reverse T3, he is pretty sure I have a candida overgrowth and most shockinlgy I have a double mutation of the MTHFR gene, location C677T. This means I inherited this mutation from both my mother and father.
There are many mutations of this gene but the most common are 677 and 1298.
I have a double 677 mutation which is considered the most severe.
So what IS the MTHFR gene?
AS you can see by what I underlined and bolded.....THIS is a big deal to me since I am dealing with chronic inflammation and pain and alot of fatigue!.....as well, Depression runs rampant in my family and I have suffered for years.
So what does a defective (mutated) MTHFR gene do to you?
Here is what the leading expert Dr. Lynch has to say about it:
"I believe the MTHFR gene mutation is a highly significant public health problem that is completely ignored. Yet, millions are suffering from pulmonary embolisms, addictions, fibromyalgia, miscarriages, schizophrenia, severe depression, cancer and autism to name a few."
What started with "You have Hashimotos thyroiditis". 4 mos ago.....is now (and counting):
-chronic leg pain
-chronic infection (he is testing me for Lyme and TB this week for starters)
-Mutated MTHFR gene. (terrified I am going to be diagnosed with fibromyalgia...although I suppose that is what my symptoms are right now anyway.. but I still don't want that label:)
I am so tired all of the time. On the OUTSIDE, I APPEAR seemingly healthy to people (which sorta makes me feel like an idiot) but inside my body is a toxic mess. I struggle to get dinner made, keep the house clean, stay up on work and just get out of bed each day to help get my kids to school:( this breaks my heart. no one sees the struggles that go on behind closed doors. I am SURE my husband is sick of hearing "i just can't honey, I'm so tired, my head hurts, my legs and back hurt, can you please do it?"....ugh just writing that makes me want to cry with frustration! i don't want to be a burden to ANYONE!
I had to teach lessons this morning to two new makeup artists I'm training and after 5hrs on my feet, I can hardly find the energy to do anything but sit here and type in my cozy chair. Somehow I need to go make dinner and catch up on work after a weekend away with my family.
THIS is not MY NORMAL:( the last few years I have just watched myself FIZZLE. it is so infuriating and discouraging.
I find myself questioning whether I can keep this up. Whether I can keep my business going?, my life going?.
I am still struggling to learn to say NO. I THINK in my head that I can keep doing everything that I always did, but then as the day goes on I see that I've again over scheduled myself and that I'm a weak shadow of what I used to be. It seems to glare me in the face as if to say "See, I told you you can't do everything you use to do"
I worry that If I ask for help people will laugh at me b/c everyone on the outside always tells me how I LOOK healthy. I don't want to be that person that NEEDS help so even when it's offered, I find myself saying "no i'm FINE.!!!" and being very adamant that I can do everything on my own.
When i'm laying in bed, I have urges to get up and run or exercise or go-go-go and clean my whole house and then I get up and try to go and realize i have no fuel in my tank. it is a let down every time.
I hold to the HOPE that SOMEDAY I will be able to be that vibrant girl again...and not just put on the facade for a few hours at a time and then feel exhausted and useless for the rest of the day.
I am still new to being an unhealthy person(that sounds wrong to say...but the fact is I am not healthy right now) and I really haven't figured out yet how to make this work in my life. I never in a million years that that THIS would be part of my life plan. and I KNOW it could be worse..OH WAY WAY worse...I know. I really do.... and I'm thankful that I'm stilll alive and walking and have my children and husband. I would rather be sick that see them be sick for sure!!
Part of me is afraid to run anymore tests and find out something worse. I try not to think about the increased risk for more chronic diseases, heart attack or stroke and I remind myself that KNOWLEDGE is POWER. If we can find out the source of the problems we have a much higher chance of succesfully treating it.
I can't ever get RID of Hashimotos, or FIX my mutated genes......but I can take this knowledge and try to find the best possible treatment there is. I hope we find solutions...that my thyroid starts functioning properly, that my antibodies come down to normal range, and that that pain in my legs subsides so i can run more than 2 miles without feeling like I ran a marathon.
I meet with my doctor tomorrow to discuss the next steps.......
I do know that My diet will have to become even more strict (don't mind me i'm NOT jumping for joy over that one)...my supplements have to change and probably the most intimdating part is my LIFESTYLE.
People with two mutated genes like me do not have the ability to break down TOXINS. This means we must try to live in the most toxin free environment as possible.
water (for cooking, drinking and showering)
makeup and hairsprays, (ummmm that IS my business, crap!)
I could go on and on but my mind starts spinning. Not sure how or when I am going to start detoxing my home:/
How did I get here? and i know that HERE is not even that bad compared to some I have seen with my same diagonosis...I PRAY that does not mean things are going to get worse before they get better.
I pray daily for strength, for hope and most importantly for ANSWERS and SOLUTIONS.
I have faith that at some point down the road, i will read back on this and will be in a much better place and will hopefully have found solutions to many of these things!!!
And I still have hope and faith that someday I will get back and be able to run the Boston Marathon.....(that is my life goal or anyone who doesn't already know that:):))
YAY for MEB and SHALANE today!!!
The MTHFR gene has been scientifically linked to a number of disorders and symptoms that you can find here:
I think it is worth looking into for Anyone who has any of these symptoms...if you found out you had a mutation you could increase your body function by avoiding Folic acid and supplementing with methylated B and folic acid.....a small thing could make a BIG difference.
Here is another great article I pulled some info from if you want to learn more: