Sunday, March 22, 2015

My Battle With AutoImmune Disease

My Mom
My mom was the most energetic, full of life, fun loving and active person I know (that is next to my grandma - her mother).  She was always on the go.  She loved to  laugh, loved to cook and bake.  She loved to party, travel and get out, she just loved life. She especially loved her grandchildren.
I am not exactly sure when but  she came down with a condition called Scleroderma. It really wreaked havoc on her body.
 According to Wikipedia:
Scleroderma, also known as systemic sclerosis, is a chronic systemic autoimmune disease characterised by hardening of the skin. In the more severe form, it also affects internal organs."

It caused her to have many complications.  She would have shortness of breath, pain in her legs, arms and fingers.  It caused her to be unable to walk or work. Eventually a list of other Autoimmune disorders developed: Rheumatoid arthritis, Raynauds Disease and Diabetes as well as Hyperthyroidism .  She saw so many doctors and was on so much medication, it was really disturbing and frustrating.  We were living in NY and she told me she was moving to Atlanta.  She said it for years. So when I visited my godmother in Atlanta  one Easter, my mom insisted I meet her real estate agent.  So I did and caught the Atlanta  bug too.  Within 4 -5 months, I bought a house and got a job. My mom was preparing to move with us also.
The week we were supposed to move my mom to Atlanta, she died , unexpectedly, of a pulmonary embolism as a result of her illness.  I was devastated to say the least...I felt so horrible that I was not there with her.
 One year prior to her death, I myself was diagnosed with hypothyroidism, an autoimmune disease.

I still feel the guilt of not being able to help her, not doing more.  She knew her condition of Scerloderma was terminal but did not tell me.  If I knew then, all the things I know now I may have been able to save her..At least that's how I feel in my mind.

I didn't understand the implication of it all. I didn't understand Autoimmune disease and that it can be hereditary as well as possibly terminal if not treated properly.  So many things I just was not aware of.
For years, I had always been a person who had low iron. Very thin, low energy and always cold and tired.  I always felt something was not right because I would be so tired. I used to think because of my long hours in the classroom and the energy pull from the little Kindergarten and 1st grade kids I worked with did me in, As well as my own school age children. I was very active in my school and very dedicated to making sure my students excelled.
 I wondered if the fact that I had a vegetarian - really pescetarian  (fish) diet made me have less energy ..but I knew others who did as well and were fine. For years I was told by doctors your Anemic just  take iron. It never really made too much of a difference to me ( I was never good at taking pills consistently,,smh.)  I also suffered with heavy menstrual bleeding and pain. ( Sorry for the TMI).
When I moved to Atlanta, the  first year I was so sick. Not sure if it was the water or new food options..I was not well.   I went to doctor after doctor and they would say the same about me being Anemic and they could not find any other problem   Then I was diagnosed with a hiatal Hernia.
According to Wikepedia: .".hiatus hernia or hiatal hernia is the protrusion of the upper part of the stomach into the thorax through a tear or weakness in the diaphragm. Hiatus hernias often result in heartburn but may also cause chest pain or pain with eating

So I had to change my diet to no fried foods for a while.  I ate mostly steamed, boiled or baked foods until I felt better. For  about a year or so after that, I began to feel extremely exhausted every afternoon,  so much so that I couldn't sit down with out falling into a deep sleep.. Doctors kept telling me I am fine and it could be the blood loss from my fibroids. Then one day I woke up and passed my hand on the back of my hair an it was as if someone shaved the back of my head. At least 6 inches up from the nape of my neck the hair was gone. I made an appointment to see my doctor and that's when I was diagnosed with Hypothyroidism.  I was told that all my symptoms were due to this disease and that I would have to take a pill everyday for the rest of my life and I would be fine. One year later I was told that it was Hashimoto Thyroiditis.  The doctor didn't make a big issue of it and neither did I..I knew I had it but never looked at it in depth.  On top of it all I had low platelets which led to the ITP diagnosis. On top of THAT  I also had fibroids (#problemchild smh). Which I had a procedure to end the heavy bleeding and cramping..   These conditions have drained me at times to no end.  It has made me almost lethargic and has affected my thinking, my daily functioning, and employment.  It created some serious brain bad to the effect that my greatest pleasure reading became a struggle.  I have had sciatica, palpitations, migranes, early menopause, and so much more.

SO...6 years after my initial diagnosis, my condition just became part of me, on one hand I just thought that was how I was on the other I knew this was not me ..I started having these serious flare ups.  They would include palpitations, hot flashes, sinus issues, no sense of smell, drop in pulse and blood pressure, aches pains and a great pressure around my neck, great anxiety, mood changes, poor habits and decision making and depression. I would be visibly tired.  My eyes were dark and sunken in and I had some swelling in my face fingers legs and feet. Again going back and forth to the doctor..with nothing wrong all my test came back normal  for the most part.(Except for my low blood platelets). Another strange thing was that they wanted to check my liver because my enzymes were elevated  but I had to explain I was not and have never been anything more than an occasional drinker..
 By chance I met a person who had Hashimotos,  who looked at me and said.."Hey, do you have Hashimoto's"  I was like yes and she proceeded to tell me about things I should not eat..I decided to research it further and found a wealth of information.  I bought some books, changed my diet,  and found a natural health practitioner (functional medicine doctor). After 4 months with her, I feel about 75 percent better.  I am  still working to get to 100%.
 Hopefully my story and the info I will present will help someone.  Its not an easy battle.  Many do not understand this struggle.   And believe is a struggle.. I am here to say that I know I can get better and my symptoms can be lessened with proper treatment..and if you are experiencing the same  you can too.

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