2019 trials and tribulation · blogging · Faith · Life after a coma · Sickle Cell Disease · Spiritual, devotion · Survivors · Thoughts · Warriors · Writing

Fascination with the body

TIME LINE: Sickle cell has me fascinated by how the body works. It also proves to me the power in God’s healing if you are faithful. Ending of 2016, I had back pain that I couldn’t describe or explain .. went on into 2017. This is when I first learned about Avascular Necrosis (AVN) in Sickle cell (and trust me that took about 6 months of initial pain and about 15 doctor visits and two different hospitals specialist. I drove an hour to one of the hospitals about 3 times. Several X-Rays, MRIs and full body scans. Till I was told by an orthopedist doctor in a nonchalant way “what I really think is wrong and maybe no one has told you is that you probably have AVN in your shoulders but I only specialize in Knees so there is nothing I can do for you, find an orthopedic doctor who does shoulders” and poof just like that I was dismissed to figure out what is AVN and where can I find a shoulder doctor? Answers no one had. I then googled that word and in that moment I took to Facebook sickle cell group asking questions. well to my surprise I had about 40 responses to questions. Apparently many of my Facebook group members were a victim already, a few others had children who have been diagnosed but were to young for surgery because their bones and joints were still growing. With that knowledge I went to see my then Hematologist who then said ” It was eventually going to happen with sickle cell, its amazing you got it happening in your 40’s” – like say “what dude” no one ever told me that. Took a year of horrible pain and practically NO use of my right hand. Surgery November 2017 Fast forward to 2018…..

Beginning of 2018 I was in New York, I was walking to the store and felt slight pain in my hips, had my PCP order and X-Ray results as his office relayed to me mild arthritis of no biggie it was very mild not much pain and seems only to happen when it rains or cold… Summer of 2018, I moved to Texas. My left shoulder has now become problematic, new PCP new state, new doctors,… same issues. Apparently sickle cell follows me (LOL), but this PCP was on point. I asked her to just X-ray because I don’t want Déjà vu to happen again. These results came back with a reading of Ostenecrosis but she needs an MRI for more in-depth evaluation. MRI reveled just what the X-ray did Avascular Necrosis aka Ostenecrosis. Wait wait we are not done yet. two months later that very same hip back in the beginning I was told was mild arthritis began acting up, pain was creeping up on me. Testing again… repeat the process … results are the same… here we go again Hip replacement. … Present Day…..

Now, I have AVN in both LEFT shoulder and hips. I want one surgery but was told NO by both Hip Orthopedist and Shoulder orthopedist because obviously I need 2 different doctors. The said I need at least 5-6 months in between surgeries. So now that I had the shoulder replacement and if you follow my recovery, I am no where close to 100% recovery. I only completed one month yesterday. I was happy to be off Narcotics but guess what? Since Sunday I have been having hip pains again. My body is not getting medication and my mind is not 100% focused on pain. As amazing as the body is that it knows when one part is in trouble how to focus it’s shift on another part.

I prayed hard from since 2014 for God to keep my body free from crisis because I cannot handle one while I heal, apparently I missed praying for damages I did not know about. I have been blessed with 5 years of no crisis, not even a small one, that mark has surpassed my 3 year break. I have spent 3 solid years in 24/7 pain. Now I am praying to hold off and hang on till at least December for my hip replacement surgery. Extreme strength to handle pain. I can’t wait to get back to Living Out Loud.

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