Wednesday, May 24, 2017

My Story Of Illness

****Warning Long****
I thought I might never share the pictures of my illness but today with Mothers day approaching, I felt led to share. It is a 13 year journey of good days and bad days and God days.. I am sharing to let every one know that the human spirit is an amazing thing. We can get knocked down 10 times and still get up again.
I was a Wife, Mother and a sole support Nurse in upstate NY when I got these sharp pains in my right upper arm. It was so sharp and then gnawing at times that I thought I had bone cancer. I couldn't lift a chart at work without pain. I couldn't do my job and then in Dec of 2004, I broke out in red bumps on my hands. They were only centered between the thumb and forefinger. They were raised, painful and itchy.
I showed them to the Dr's on staff. They had never seen anything like it. I went to a skin specialist who biopsied the bumps. That came back that I had a condition called PNGD or palisaded neutrophilic granulomatous dermatitis.
It was rare and associated with connective tissue disorders like Rheumatoid Arthritis, Lupus, Sweets, Sarcoidosis which they at first thought I had. The tests were all negative. They tried antibiotics. Prednisone, Neurontin, then amitriptyline as they could not diagnose me and wanted to give me a pill to make me feel better about that.
It did not get any better. I was in bed six months, not eating, changing meds like my underpants. Nothing worked. We all thought I would die before they could get a handle on what was happening. My husband, at the time, was telling every one I would die, to garner sympathy from his women. My son was afraid. I could tell it in his wide eyed looks at me, when he would try to get me to eat or drink. He thought I might leave him alone with his father, that could not take care of himself, much less another.
After months, I finally made a decision to come South to be near my Nurse Daughter. I had a diagnosis of Fibromyalgia, possible Sarcoidosis, possible Rheumatoid Arthritic Deviant. and I had gained 70 lbs from the "treatment" for my malady.
By the time we got to Florida, my husband bailed on me. I was too heavy for his desires and I was too sick to support him. Almost 20 years gone in a poof and I did not realize how getting sick was the best thing that ever happened to me, at the time.
It rid me of a man that would never be able to care for me, in my young age or my upcoming old age.
I learned that it is better to know that before it hits you upside the face.
I learned that each time a new treatment was devised that I embraced it and tried to do my best with it.
I lost my health, my job, my home and its contents, and finally my husband. I never gave up. I fought back. I had no health care but I had a place to live. My daughter made sure of that for many years, then in 2009, a vagabond existence began.
I was still selling all of my treasures and Thank God I had them. Between 2005 and 2013, I moved 13 times, sometimes for a yr, sometimes for a few months. I could not find a place to light. I was a moth circling the flame of sickness and death.
In 2008, I was trying to walk. It was January and cold but the cold numbed the pain so that I could try and walk. On one such walk, I heard rustling in the woods on either side of the road and 5 deer of differing sizes came out right in front of me. The large deer leading with smaller and smaller deer to the little deer trailing the line.
I felt like I was thunderstruck watching them. God had sent me a definitive message that I would survive. The first deer was my health, walking away from me, then my job, my home , its contents, and finally my husband leaving me. I knew in that moment that my problems had become smaller as each deer passed and that i was still here. The deer were showing me that one day, i would be a thing of beauty running free.
I kept at it, walking then running and lost weight and gained strength. The first photo below was before I knew I was sick. The second one was during treatment and the successive ones after that.
The years of non treatment and health care took its toll on me with my organs and especially my lungs. They aren't great now but I am still here, still breathing, still fighting the good fight. They still don't know exactly what connective tissue disorder is taking my health. I don't know that they will ever know. They only know the tests reveal that I have one. The inflammation in my body is off the charts. The pain is a constant reminder that I am here. I truly don't know what I would do if it suddenly stopped.
I try all kinds of holistic things and organic things in the 11 pills in the morning and the 6 pills at night and the liquids and balms and and..... lol. And I am still here. Loving every day that God graces me with. Loving my family beyond belief. Loving my friends with all of my heart. Loving.. Loving...
I don't look great again now.. I haven't shared a photo in a while because of it. I don't want to scare the people. LOL.. But today is a day of thankfulness and celebration so I am sharing the latest photo with my Granddaughter. She shines bright and my heart is the better for it...
My smile will always shine brightly because I have life and if you have life, then all is well. I am truly blessed and thankful today to be living with my oldest daughter, my daughter in law, my grandson and his girl. We are a family, an unconventional one, but a family and I love and appreciate all that they do and have done for me.
On this Mothers day, hug your Moms if you still have them. Love and live each day as if it were your last. Let life lift you up. Let the grace of God and the people that love you help you find your smile. We aren't guaranteed easy days, but if we are above ground, then that is an opportunity for greatness.
I don't share so that you all feel sorrow. I share so that you all feel strength in the human spirit. The strength that comes with Love.. A four letter word that means nothing has to be spoken aloud. It surrounds us, permeates our being and gives us strength to keep on walking, just as I am.... Much love to you, Kamama

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