Comment on Living with AutoImmune Diseases by Elena.
Hi Barb,
So today was the first day that I said it out loud. I HAVE AN AUTO IMMUNE disease… I have been dealing with significant pain in my legs for the last 10 years. A couple of years I was in “remission” — lately no such luck. My first desperate attempt at medical help — the doctor yelled at me. “I TOLD you, you have inflammation!”
I could not take that as an answer. According to her I would be taking Flexiril 3 times a day…and sitting in a tub of ice. (I couldn’t function on ONE Flexiril taken the night before!) I just kept on – crying in my sleep, taking Motrin, Tylenol and Advil like candy. Eventually they found a lipoma tumor in my right leg and I thought removing that would alleviate my pain. I was wrong. I found an incredible chiropractor/kinesiologist — practioner of functional medicine. She was always confirming how I tested for heavy metals. I was at the end of my rope when I walked into her office in desperation and she said. “Elena you have serious inflammation — let’s take care of that” One month later through diet — (strict cruciferous vegetables and supplements) I was 25 pounds lighter and out of pain. What a godsend! WOW! she gave me my life back.
Fast forward 7 years – I have had continual bouts…and set-backs. Thinking that I am normal and can have a piece of sourdough bread — or that piece of pie. I no longer am responding to clean eating.
I am having total hip replacement surgery in a month as I have been walking with the help of cane for most of this year. X-Rays don’t lie so I am no longer in denial and I have agreed to have it replaced. Having said that I am frustrated of trying to explain to people about my “other pain”. They don’t understand —I do suffer from leaky gut — I have never been formally diagnosed but have suffered through some extremely painful episodes. There was the time I thought I would do a “juice” diet with my daughter, after the first day…. I could not walk a block to save my life because I felt like my leg muscles would explode.
I have learned to listen to my body, to pay attention to what I put in my mouth. No sugar, no gluten…I have tried to heal my gut only to have the pain come back months later with a vengeance…
Right now my pain is about a 10. I resorted to taking Aleve to get myself into work this morning. I have literally broken down in the solitude of my home when simple tasks have proved daunting. I can no longer make my bed, or come down the stairs, or do the laundry. I started weeding in my garden the other day because it was sunny out and I love being out there. I got down on my knees in the grass and looked up at the redwood trees against the sky…and I lost it. I sobbed and sobbed like a child. I sobbed until there were no more tears left. I asked God and the universe for help — for strength to “fix” myself and what ails me. Barb, your story resonated with me. I too used to be a super mom… taking care of 3 girls by myself. Working full time. I cleaned my own gutters…and fixed my own faucets. I was so INDEPENDENT and now I can barely get in a car. My dear devoted fiance has to lift my legs into the car for me. He lifts me gently in the bed at night… and when I get myself in a position where I cannot get up — he is there to help me stand. I have had way too many breakdowns recently because the pain is fierce. I keep going because I have no choice. I have not given my pain a name until today (just autoimmune) and somehow it has empowered me. I don’t believe I have Hashimoto’s but interestingly enough my sister was diagnosed with it. I have yet to get a diagnosis for what exactly ails me because I gave up going back to traditional doctors. Having said all that, I feel more positive than I have in weeks— I no longer feel alone. I know I can do this —and reading your blog and all the other women’s stories has given me hope.
Hope that I thought was slowly withering away. I’ve wanted to throw myself off a building or go off a cliff at times. (fleeting thoughts… but that’s how bad I have been) I think how unfair this has all been to my loving fiance. We just met this year and months later I started my painful spiral downwards. He refuses to leave my side so I am feeling extremely fortunate for that as well.
All in all — stopping in here today was like a shot in the arm. I like your opening line : I am blessed. I would constantly say that as I walked in the pain…. “thank you for my legs that hurt” —-because I know that I at least have legs. Thank you for the body that has turned against me because I am still able to be here to enjoy my family. Thank you Barb for letting me share. I am feeling pretty blessed today and praying that tomorrow will not be a ten…but maybe a 9 — or maybe even an 8. I will take the small victories where I can get them. AND THANK YOU MOST OF ALL for showing me that I ( that we) are not alone in this.
May your journey get easier.