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.


Finding Peace While Making Faces

Faces of Juicing Recipe Book Sign

Faces of Juicing Recipe Book coming soon!

Another month just went by pain and symptom free. I have been working hard on a recipe book called Faces of Juicing. I did not realize I have not posted anything on this blog in the last month. Time seems to go by fast when pain free, it is a nice change. I like having a hard time not wanting to stop walking or carrying my stuff. I love getting to pick up my dog Hershey, petting the dogs, holding my camera and anything else I want to do. I can even stand around and sit on any seats now, so yes I love it. I even wore blue jeans this past week, I haven’t done that in almost two years!

RA Warrior is doing another blog carnival and has asked patients to blog or comment on what do you do to keep the disease in taking over parts of your life? Which brings me to Faces of Juicing; during my three years of flaring I started juicing. In the fall of last year I started playing with my food and making faces out of the produce before I juiced them. Before I started flaring I took a camera out all the time to take photos of flowers, butterflies, events and anything else I found interesting. I really missed being able to do something artistic like that, so I decided to start doing something with the produce to make juice.

As I started it was hard staying on my feet that long, they would be on fire before I was done. My shoulder was also on fire many times after lifting and pushing the plunger down on the juicer, one time it swelled up pretty good a few hours after making the juice. But I was really enjoying making the faces and juicing each day. As drugs changed for my Rheumatoid Arthritis I had improvement and now I have no pain at all while juicing or any other time during the day or night. Making the faces gave me some peace from the disease even when I had increased pain from doing it.

I am not sure how to explain that feeling of peace. It was like when I held my Canon Rebel up to my face and looking through the view finder, the few seconds it would take for me to frame the photo and focus on the scene I would have complete peace and the pain would not matter. I found that same peace while playing with my food and making a face each day.

During the start of my third week of being pain free, I got a tweet from another patient in the #rheum community on Twitter. @anetto said on February 24th “@geekgoodgirl @gotbaddog You need to do a Faces of Juicing book. I bet you have enough pictures #rheum”.  I saw that and thought in my head, “OMG, I can do this! OMG, I never thought I would do this.” I have done short technical eBooks on how to do things, usually only a few pages long. Write a book, a recipe book, me? Well you know the craziness of Rheumatoid Arthritis, we do some crazy stuff. So yes, yes I will do this book! A week later I had all the photos downloaded to my computer and began working on the book. A month later I had a 90 page recipe book with over 50 juicing recipes. That is crazy right? To me it was, especially since in the last three years I struggled to write posts in blogs; it is hard to think when you have so much pain and fatigue. For that reason I decided the timing was right so I better get to writing. Currently I am finishing the website and then will release the book for Amazon Kindle and paperback.

But that is not all, what started out as something fun and peaceful to do has now turned into multiple books. I am working on the second book, juicing for weight loss now. Also another person in the juicing community I put my juicing photos up on has been making characters before blending. So I will be working with him on a recipe book for blending. How exciting is that? Continue reading

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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