Disability

The road to disability has been long and hard. For the first year of my illness, I kept thinking I could just "beat this disease", as I had conquered and achieved any other goals I and set my mind to. The second year, I didn't qualify because my diagnosis didn't fit into a pretty little package and was complicated with an unnamed diagnosis. A little over a year ago, the rules were changed and a lawyer took my case. For the last year, I have bent over backwards, jumped thru hoops and did everything the doctors and lawyers said. 

Today was one of the hardest things I have done. 

I had a dr appointment today for the disability doctors to prove if  I am telling the truth. Of course I am. I do not lie. In order to go, I had to go off all meds that were not on my original medication list without a doctor letter of explanation. Q96 was not on the list. So last Friday, were the last doses I took until this afternoon. 

Saturday, after dose one that I skipped, I felt uneasy. I wanted to take Q96. I wanted the relief that came with the relief and help Q96 offered. I plead for peace. By Saturday evening, I was miserable and in tears. Sunday brought more tears, more pain, more symptoms and more frustrations. 

I also found out the evaluation they were doing, was not a medical or physical exam but a mental exam. Really. I can't walk. I have seizures. I have almost died on multiple occasions and they are more concerned about my mental health instead of my physical health. 

I lost it. I cried. I cried more. I laid in bed and had a complete and utter breakdown. Why? Why can't they see what this is? Why because I don't have cancer or leukemia, Parkinson's or Multiple sclerosis, do they not believe I am sick? 

I was given multiple diagnosis. Dysautanomia. Peripheral neuropathy. Autonomic neuropathy. General autoimmune disorders. Neurocardiogenic syncope. And a disease that mimicks Parkinson's, ms and lupus at the same time. I cannot drive a vehicle, and haven't been able to in over 3 years. I can't work. I can't cook. I can't take care of Hayden in the way I want. I can no longer run the toy drive. I can no longer be an advocate for autism. I can't play and do what I used to do. I can't go to activities. I struggle to go to the movies once every three or more months. I cannot cook dinner for my family. Bathrooms must be cleaned by others. I cannot walk the dogs. 

I have been told on multiple occasions that death is imminent. That this disease is a life sentence. Death is imminent. I was told this in incurable. They call me "the one who refuses to die". Not, the one who lies. 

Yet, they are going to test if I am lying or just mentally struggling. 

After talking to the attorney and Jodi, I felt better. I guess the disability doctors have just volumes md stacks of medical records on me. They have facts, test results, prognosis, events, and all of the true hard facts of the physical reality that is my life. What they are missing, is how I am coping with this. 

Can I work? Ummm.  I can't walk hardly or drive and even sitting in church for 3 hours is completely out of the question even on my very best days. Even on the rare days I can go to church, one hour and I am dying. If I make it just a little overan hour, I'm flat in bed for days. Exhausted. Miserable. 

Yet, the state is more concerned with why I don't need counseling to mKe it through? They don't understand why I don't need a support group? How I can emotionally be ok. 

Truth is.....it is hard. Incredibly hard. But my Savior doesn't leave me alone. He sends loved ones and friends and ward members to comfort and uplift me. I have my own personal support group. I am strong because my Savior has strength not because I do. I am ok because I know I do not walk alone. I know that my Savior walked before me and carries my burden. 

As the attorney told me. "Just tell the truth", I calmed down. I can do that. I can be truthful and honest. That is all I know how to do. So I will mellow out and relax and endure. I will take the tests. I will let th test my short term memory. 

I will be grateful when I can again take Q96. Until then, I will try to endure.