Monday, November 21, 2011

What A Difference A Day Makes

If your days are anything like mine you start off with high expectations. I admit, I’m the queen of post it’s and the master of high hopes. But when you deal with chronic pain illnesses you have no idea what the next day holds. For that matter, you have no idea what the next hour holds.
I remember a few Sundays back. I was really looking forward to going to the morning worship service. Which means that my husband, Tippy, for sure can go because he doesn’t have to babysit me. He sings in the choir and I absolutely despise it when he has to sacrifice what he loves doing because I need someone with me during those times when things are really bad.
And by “things” I mean, the feeling of pain so deep (in my feet and legs) my bones feel broken, my feet are burning, the sheets hurt if I roll over in the bed. I certainly can’t get up and walk on these “broken bones”. At the same time I have frequent jolts of lightning in the veins of my feet and now up into the calf area of my legs. We can actually watch the veins pulsate and then sometimes turn a bluish color similar to an everyday bruise. Not to mention, I stay so nauseous I rarely drive or go anywhere alone.
As most of you know, several months back, my Primary Care Physician diagnosed me with having Reflex Sympathetic Dystrophy. Although he (and I) was certain, he sent me to see a specialist at UAB. I walked in knowing my PCP was right, but had this shred of hope that he was wrong. I was hoping to hear the symptoms were from my back surgery, gone wrong, and it could be fixed.
The specialist confirmed the leg diagnoses, known now as Complex Regional Pain Syndrome (a chronic progressive disease characterized by severe pain, swelling and changes in the skin). I asked bluntly, will this get worse? Will it spread? He shook his head yes to both questions. And then, palms down, he brought his hands up to his waist and said, “most likely, to here.”
He kept spurting out so many words and names of conditions I finally asked him to write them down. I walked in with a heavy load and when I left I felt that load would squash me at any moment.

The combination of my illnesses and disorders are GIANT factors working against me.
·        Malfunction of the Autonomic Nervous System (ANS) which effects the involuntary actions such as heart rate, digestion, salivation, perspiration, urination, diameter of pupils, breathing and most of the body’s internal organs. The ANS also controls the Sympathetic Nervous System (CRPS).
·        Dysautonomia ~ disease of the ANS most likely caused from having an autoimmune disorder. Symptoms can dissolve over time or continue over the entire course of my lifetime.  Per research the prognosis is not generally good for someone who also has an issue with the body’s nervous system. Symptoms include: (that I am experiencing) lightheadedness, weakness, blackouts or fainting, palpitations, shortness of breath, loss of or excessive sweating, nausea, abdominal pain, constipation, bladder dysfunction, fatigue, sleep disorders, migraines, facial pain, dizziness, changes in heart rate, clamminess, anxiety, flushing, feeling cold all over, cognitive impairment, high BP, noise and light sensitivity, muscle aches, weight loss or gain.
·        Fibromyalgia ~ diagnosed over 10 years ago. Symptoms mimic so many other health conditions it is often hard to diagnoses or find other underlying medical issues.
·        Complex Regional Pain Syndrome ~ a chronic pain condition.  The key symptom of CRPS is continuous, intense pain, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet.  Often the pain spreads to include the entire arm or leg. (In my case, both feet/legs). Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.
·      Spinal Canal Degeneration and Discs Degeneration ~ The specialist said it is his belief that my spinal issues have exacerbated the CRPS. Therapy for the degeneration issues did not work in the past. Two surgeries later I am still having back pain and problems. He stated that although my spinal column is degenerating, surgeries will likely make the CRPS worse.
·      Immunoglobulin G Deficiency Disorder ~ Treated monthly with IV immunoglobulin treatments @ Brookwood Hospital. IgG are the antibodies that fight viruses, bacteria and antitoxins. This health disorder is another factor in my fight to stay healthy and pain free.
·       Trigeminal Neuralgia ~ is a nerve disorder that causes very painful stabbing or electric shock-like pain in parts of the face. The pain comes from the Trigeminal Nerve which carries pain, feeling and other sensations from the brain to the skin of the face. These episodes can last a few minutes or become constant. Because of the intensity of the pain associated with TN, this disorder is also known as the Suicide Disease. Thankfully, it has been more than a year since I have had an episode.
???? Have I forgotten anything? I know, this is enough, but it seems I always overlook something.
I came out of the specialists’ office with confirmation and additional information. New and upsetting. My heart was so heavy last Friday when I left UAB. My Mom asked me on the ride home if I was OK? She knew I was awfully quiet. Although my heart felt as if it had stopped beating, my mind was racing. I was thinking. Wondering. Wishing. Praying. Questioning.
I cried Friday evening until my head ached. Until I could cry no more…….until the next day began and so did the tears. I felt the winds had ceased and my sails were hanging, useless.
The only thing that was still the same, that I was still certain of, was that I am a child of the King. A masterpiece. His design. Made as I am for a reason. He will use me as He sees fit. All I have to do is trust Him and believe.
We all should do the same. Trust and believe. Have faith when we don't understand. Your outpouring of love and support has been overwhelming. I am so thankful to you all. To everyone. Prayer has the power to change what we see as impossible. With God all things are possible. So for that reason, I have not lost hope.
Love and prayers to you all,

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