Changes Are Difficult

Living with a chronic disease is not easy. Having so many changes happen so fast is just as hard to deal with as the pain. I am still learning the new me and trying hard to pay attention to what is different now. It has been difficult to notice some of the symptoms I am left with since the pain died down, which seems to be nerve related. So I had my first visit to the neurologist in which I learned I will need to remove few items on my wish list because of neck damage, no sports, not even jumping in a pool. I also cannot wear a helmet.

I did however; get to check off a few items on my wish list. I went to visit with my family and a friend in Indiana, went to see Carl Palmer of Emerson, Lake and Palmer at Saint Rocke in Hermosa Beach, did the Unity Run in Pasadena and I am still walking daily. I did wear myself out in Indiana, I have difficulty pacing myself and other times I have difficulty staying on track. It is crazy. Even though most of the time it was good stress while getting to visit family, the length of the day was longer than my normal day at home.

I visited my sister for awhile I was in Indiana and she was doing well. But now she is in the hospital for the second time in the last two weeks and I spoke to her on the phone this morning. I wish I could be there to help her more, I know how difficult it is to deal with the changes, pain, anxiety and fatigue. Please pray for her full recovery.

During the last year of flaring, when I was missing being able to use my camera, I began playing with my food and making faces. Even in pain I would stand in the kitchen, choose the produce and create a face. I found it gave me some peace. Sometimes it is difficult to find peace while living with this disease and when you do find it, it disappears again. I used to enjoy using the camera all the time, the few seconds framing the shot and taking the photo made me feel at peace. Riding on the back of the Harley with Lloyd made me feel peace.  When I began playing with my food and making faces I took a photo of each face and now it is a juicing recipe book called “Faces of Juicing“. In every photo sits the knife I used to cut up the fruits and vegetables, it  may seems strange but since my mother lost the use of her hands first I thought I would take advantage of still being able to use those knives.

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Faces of Juicing Book
Biotinidase Deficiency Not RA
Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.
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