Let me back up. A couple of months ago, I heard about this amazing doctor who dealt with my disease. He had been able to help so many lessen their symptoms and have a better quality of life. I couldn't wait to get in to see him. I allowed myself to hope. I allowed myself to imagine being able to once again do some normal things once obtainable. He asked me to bring a list of my three greatest complaints to see if I could minimize my symptoms. I was so hopeful for some relief of the awful autonomic dysfunction symptoms.
I eagerly went to the appointment and was excited to meet Dr. Levine. We talked. He read my files. He pushed his chair back and crossed his legs. He took a deep breath. I hung on his every word ready to find some relief. He smiled a half smile at me as he explained I was "complicated". A little hope died but I was still eagerly hopeful for help. Instead, he explains the disease. He explained that certain varieties of the disease had no,treatment and no chance for relief and there was nothing known to help ease the disease or stop it. My heart froze. Then he continued... With my symptoms where they were currently at, my vascular system was shutting down. My arteries and veins were no longer pumping blood to my extremities which was causing the sensations of my,blood itching and the excruciating pain in my legs and feet, the cramping, and my struggle to breathe. More words were spoken as I felt the hope fled from my heart. Then, as if that wasn't a hard enough conversation to swallow, he added that where I was currently at with my symptoms, my body could only probably survive another 4-6 months.
I fought hard to fight my emotions as I looked at Dr. Levine. His mouth was still moving and words were coming out. However, "4-6 months.... Nothing more we can do..... It's so complicated.... We don't understand.... 4-6 months.... Nothing more.....no relief" radiated in my heart and head. I was deflated.
I told him I felt better than previously. Yes. It is true. The above symptoms were causing struggles and complications but still not as bad as I once was.
We discussed a treatment. Experimental. No results as to why it works but they have had some success. It was extreme. Complicated. Extreme. I asked what. I'd try.
He explained a high dose combination of IVIG and other medications, highest allowable by law, for 3 months, consistently given, may get my body to "give up" where the autoimmune is hiding and they could identify the type of autoimmune disease. He said it would take me to almost an inch of death to trick my body into giving up what has taken over in my body. He said I could expect to develop meningitis and be miserable. The treatment had a success rate of 10%.
Here we go again. I found myself agreeing to the treatment although part of me wanted to scream. So many emotions and feelings went thru my head and heart. I saw myself enduring the first experimental,treatment at Mayo Clinic. I had meningitis. So so sick. Almost died. Then the next treatment where I was so sick but handled it much better than the first. I felt that I was spared the first time. The second I had Dr. Shiflet and all natural supplements and remedies to help me thru. This time I also had Q96. I would be spared. My life would be spared again. I felt peaceful.
The doctor spoke. I could no longer hear his words. I fought back tears as he explained he would contact Mayo Clinic doctors and the insurance company. He would schedule me for tests once insurance was approved. He would get me in for autonomic tests. Then start treatment. I would come back in at the end of treatment for additional testing to see where my autonomic system was at and undergo testing to see of they could locate the autoimmune disorder that was unidentifiable at the moment.
I fought hard. I set my next appointment. I walked to the waiting room and out the front doors. I could no longer fight back the emotions. All of the hope and eager anticipation fled from my body. Fear and loss and hopelessness replaced all emotions. I felt absolutely defeated. How much longer must I endure? How much more must Thomas and Hayden continue to suffer because of my illness? How was I supposed to homeschool Hayden? Could I survive the treatment? 10% chance. 10%. 1 out of 9 chance of death and failure. I could barely breathe. My heart broke. Completely.
I cried or sobbed to Jodi not knowing how to tell my dear husband. She encouraged me. She gave me the strength to tell Thomas. My husband was inspired and knew exactly what to say. He assured me that the odds were not too great for our a Savior. He assured me that the Savior already knew my illness, my autoimmune disorder, my weaknesses and more. That I would be spared and protected by our Savior.
I calmed down but was beaten down still. I got home and collapsed. I cried into my bed. Sobbed. I was blindsided. Broken-hearted and blindsided.
I will fight this I will give my,all. I will trust my dear Savior. But I really hope that someday I will find relief from this illness. Unfortunately, I know relief will only,come in the form of death and escape from this life. Instead, I pray I will be able to endure. I pray I will be able to handle the pain and disease inflicting havoc on my mortal body. I pray my Savior will continue to walk with me. To guide me, help me and keep me safe always.
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