Disability, due to pain, brings a mixed bag of blessings and troubles. Oswald Chambers wrote ďGod does not keep His child immune from trouble; He promises, ĎI will be with him in troubleÖ.íĒ Psalm 91:15
Boy, was I in trouble and really had no clue. Officially disability was declared a little over five years ago. I was struggling for years before that, but managed to keep my job.Then the body collapsed and said, ďIíve had enough of this!Ē
Neurological problems are so deceptive and very difficult to define, donít you agree?
They are also painful. I was diagnosed with polyneuropathy with an unknown source and probably autonomic neuropathy. I also was told I might have a form of dystonia - PKD. I have fibromyalgia and myofascial pain syndrome, Hashimotoís thyroid disease, Raynaudís, peripheral artery disease, carotid artery disease, coronary artery disease, high cholesterol, and arrhythmias.
You know in this day and age how the doctors love to specialize and hand out prescriptions left and right. Finding a primary care who is willing to coordinate all of these is a mighty task. I think in the last five years Iíve had six PCPs. I feel I have finally found the right one for me.
During this time of searching, I was at the mercy of each specialist. I would always bring a medication list but I donít think they paid much attention to it. They just added another drug to my growing list.
Many people with fibromyalgia are drug sensitive and I am no different. Allergic to most antibiotics, it is scary when I am given one I havenít had before. Mostly what happens to me is my throat fills up with fluid. Itís called laryngeal edema and it makes me feel like I am drowning. Often I can take a drug for a short time without reactions, and whammo! out of left field I am in trouble.
Just before I went on the lyrica, I started with excessive sweating spells that came out of no where. I hadnít had any problem with sweat at all. In fact, I didnít! I went to my endocrinologist and he ran some tests but nothing showed up. I then assumed, with my physiatrist, that I had autonomic neuropathy. The sweats were horrible. They came any time of the day or night. The doctor did nothing.
I was put on lyrica for my polyneuropathy. It helped with the pain but over time I found I had put on twenty pounds and couldnít take it off. My breathing became a problem. Moving in general was a problem. In addition to the lyrica, I was also on lortab.
After about two years on lyrica, I developed laryngeal edema and had to quit cold turkey! It was not pleasant. The withdrawal took about six weeks. The weight loss was the only positive thing going at the time. During this time I also went on a gluten free diet. That was positive and helped in the weight department, plus it made me feel so much better digestive wise.
I spent time in the hospital the first five months of the year. I had two surgeries and several attempts to figure out what was wrong with my heart and digestive system. My second surgery was a second surgery on my foot and the very most painful experience. I had corrective surgery from the first plus a plate and several screws put in to fuse a joint and lower a toe. The pain medication was like taking a tylenol - it did nothing. From 3 PM to 10 AM I was in horrible pain and no one would come to help. When the anesthesiologist showed up he looked at me and said, ďYouíre in pain.Ē No, duh! Instead of the occasional shot, he put me on pain pumps loaded with some good stuff. An outpatient surgery turned into an eleven day hospital stay.
When I got home I slowly got off the pain pills and went back to the lortab I had been taking as needed for years. Surprisingly the sweating returned and when it did, I realized that I had not been sweating for eleven days. What was going on? I discovered the days I did not take the lortabs I had the problem with the sweating. I was hooked! My body craved the drugs. I went to an ex-addict friend and he told me how to come off with as little discomfort as possible. For the second time in less than a year I went through withdrawal.
My foot was very painful and slow to heal. I had expected that as it seems this temporary housing of mine likes to do things others donít. My crutches were an absolute necessity and required more arm action than prior to the surgery. My hands started to become very cold. The coldness spread up my forearms. It was so cold it was terrifically painful.
I went to my physiatrist. He tested and said it was carpel tunnel. I knew that wasnít right. He put me on topamax. I took it for a month and went to get it refilled. I read about the side effects this time. As soon as I saw mental mood changes, I knew what had been happening to me. I had a horrible month of suicidal thoughts, constantly thinking about death, and an obsession about a person that was totally overboard. I stopped taking the medicine immediately. I slowly started to get better mentally but things were still a long way from being healthy.
A visiting preacher came to town. He spoke at my church for four evenings. I went every night and God saved the best for the last. He asked if he could pray for me. Of course. He told me my body was feeling things it had never felt before. He was right. I was feeling a dry rain starting at the top of my head and going down my body to my feet.
I rested in the Lord crying and speaking in tongues. At one point a friend told me I was speaking in English to someone. I went to get up but my legs were two dead weights, as though they were paralyzed. I waited for that to pass and went on my way.
When I woke up the next morning, I realized that God had healed my mind, not just from the past few months but from the beginning of my life. I had such joy and still do.
It is a deliberate act on my part to maintain what God has given to me. As Oswald Chambers says in My Utmost for His Highest ď Your mind is the greatest gift God has given you and it ought to be devoted entirely to Him. You should seek to be Ďbringing every thought into captivity to the obedience of Christ . . Ď" ( 2 Corinthians 10:5 ).
Since that healing, my pain level has not decreased but today I learned my blood work is better than it has ever been and the amount of inflammation in my body has decreased a great deal. My cholesterol decreased from 239 to 177! I didnít want to be on lipids so my osteopath put me on niacin, a non-flush product and it worked - that and my gluten free diet. Praise the Lord for all of His goodness.
Last week I had MAC anesthesia for a procedure and ended up in the ER directly from the recovery room. I was experiencing numbness in my legs and feet, pain in my mid thoracic back, shortness of breath, and then a whoosh of numbness came into both hands and moved up my arms. I had no control over my body at all. I knew God was there for I had the peace that passes understanding. I talked to Him about this being my time to go for my rest but He said no. I felt sorry for my husband as he looked on.
I remember some of the trip from one part of the hospital to the other but not all of it. I donít know why. I heard the ER doc say he was calling my cardiologist as the ekg was different from the one I had taken prior to the procedure. I wasnít worried about my heart. My skeletal muscles were paralyzed from my neck to my toes! What a sensation - probably sensation is not the right word because there wasnít any! What a situation, yet I felt at peace. My God was there. My pastor showed up and prayed for me after I had been there for a couple of hours. Before he left, feeling began to return to my muscles.
From the ER I was admitted to the hospital. It was true my heart wasnít happy and wasnít acting as it should so I was monitored for two days. I went home and the next day I received a call from the hospital. I told them about my pain and they said to call my doctor. I ended up in the ER! I donít understand any of this but I have peace. Thank goodness I got to go home.
Iím having my foot operated on for the third time next week. I have great expectations. The doctor came highly recommended. Iíve tried two different orthopedics and this time Iím going with a podiatrist. Iím having the same anesthesia. This will prove if it was a fluke or not.
I donít understand what God is doing but that is the very least thing He wants me thinking about. He wants me to know Him, to trust Him, for Him to be the most important part of my life and for me to be the least important part of my life. I want that too.