Sunday, January 22, 2017

Expecting Victory with Sickle Cell Disease


This past January I met an orthopedic surgeon for a second time. I met him 12 years before when he had replaced a recently retired seasoned orthopedic surgeon. The seasoned orthopedic surgeon had given me the diagnosis of Avascular Necrosis of both hips in 1992. If you do the math that’s a total 25 years of living with “bad hips”. 

The older “seasoned” surgeon told me at my last appointment with him, “Wait as long as you can before getting a hip replacement”. I held onto this “wait” idea until I met his replacement.

At my first appointment, he seemed to rush me into scheduling a hip replacement. Scared, but wanting relief, I agreed.  We talked about doing the surgery in the next few months and then I panicked. I kept hearing the older, and I thought wiser, doctor’s instruction to “wait.”  So, when months past and the surgery scheduler called I never returned her calls. I was going to wait.

Flash forward to January 2017 and I meet that young (a little too eager to cut my hips off) orthopedic surgeon for the second time.

Feeling embarrassed that I stood him up for our surgery date back in 2006; I was all prepared to offer my excuse. He lightly knocked on the door, and then entered. Before I could open my mouth he said, “I remember you”.  He was older now and still handsome, but worn. The fresh faced youngster, who was inching to cut my hips off, had lived some life. He had done some hip surgeries on other sickle cell patients and he had experience.  

We talked about the past, my not following through with surgery scheduling and the advancements in hip replacement techniques. We talked about my history of stroke and concerns about sickle cell complications. We were very transparent about what was going to happen. 

I told him “I’ve dealt with my fear because I’m in the hands of Jesus”.  And, I really have released this whole matter to my Savior and Healer, Jesus Christ. 

I have done all I could do from 1992 to 2017; with herbs, exercise, message therapy, etc.  All of these prolonged the issue but the issue remains. Avacular Necrosis in both hips, a complication of sickle cell disease could not be ignored any longer.  

The one thing that stuck me as God’s wisdom, was when he told me, “You’re in a fork on the road. One road leads to the same suffering, the other leads to a life of possibilities. Decide what kind of future you want.” 

I made my decision....surgery scheduled March 2017 and I’ll trust Jesus and leave the consequences to Him.



Saturday, January 7, 2017

Sickle Cell Success....Nothing Less


#NewYearNewHips 

2017 is my year of change. I'm on my way to healthy hips and here's my first step.

The drive to Los Angeles was clear of traffic but not clear of rain. I thought it to be ironic that the clouds seemed to reflect my spirit. Although I was optimistic about getting relief for my endless hip pain, the gloomy day seemed to reflect the endless emotional roller coaster that I seem to be on.  Nevertheless, I was excited to see my grand-babies, daughter and son-in-law.

When I arrived at their home I drove past their house wanting to go to the ocean.  I love the ocean. It always makes everything else seem small. Before facing my family, I needed to see the endlessness of God’s creation. The ocean seems to calms my soul and I really needed this emotional relief. Feeling silly for taking this detour, I drove past the Santa Monica beach exit and went back to my daughter’s house. It took me five minutes to bend, creek and crack my bones to stand up and walk. "Welcome to my world", I said, thinking out loud.

Seeing my daughter and her babies made me smile and forget my anxious thoughts. The next day I was up early due to barely sleeping the night before. I got dressed in warm comfortable clothes, thinking they would require me to change for examinations, but no physical examinations were performed. My health care provider has interconnected medical records, so the doctors in LA had full access to all of my medical records. I just love technology.

The first meeting was with a beautiful soul who met me with gentle compassion. This doctor was part of the sickle cell team, with experience with people who live in pain. We spoke about my past, current, and future health issues. We laughed about the funniness of doctors and how (we) patients need to be pro-active about our health. I explained that I wanted to connect with this sickle cell team to assist me in my journey to have new hips and she agreed to follow my care and pre-operation needs. This started my day off right. I was optimistic about the next appointment with the orthopedic surgeon later that same day.

That story is for another day.  

Tuesday, December 6, 2016

New Year! New Challenge! New Hips!!!!!

 It's all set, my new year is going to include new hips.
One of the many complications of Sickle Cell is Avascular Necrosis, and guess what, I have a double dose of it.  Now, I'm past the grieving stage. I'm done crying. So now I'm in phase of acceptance and solution mode.

I'm done suffering with hip pain; crunching of hip joint and reduced functionality (walking, standing, dancing), and EVERYTHING else the hips do for our body. I'm willing to face my fears, trust God and jump (onto a surgeons table) for the first of two hip replacements.

I'll keep you all posted on the details (good & bad). 

Say a prayer & wish me luck. First appointment January 5th!!!!! 






Wednesday, September 7, 2016

Sickle Cell Coalition & The State of Sickle Cell

This is progress!

There is a group of medical professionals, clinicians, advocates, drug manufacturers legislators & researchers who have teamed up to create a new world for sickle cell sufferers. That new world looks bright and hopeful... Check it out

Sickle Cell Coalition
The State of Sickle Cell (the report)

Thank goodness for the #SickleCellWarriors who keep this subject (our lives) on the table of discussion...

We won't stop talking, we won't be discouraged, and we will win!!!

Just watch us

Saturday, April 9, 2016

Better Not Broken - Sickle Cell Disease




Recently, I spent a wonderful time with a support group of sickle cell warriors from The Cayanne Wellness Center in LA, California.

I was invited to talk about "Healing Through Journalism" and as I reviewed my book "I Only Cry At Night, the subject was confirmed to me. My past journals revealed the truth, that I had released the pain I carried from childhood through adulthood in its pages. There is truth in the belief that "we" can't and shouldn't carry our pain, or our past, if we want to live a full and happy life. We must learn to "let it go" and journaling worked for me.

As I re-read the book, I remembered the events and saw the people, places and events. The difference for me is that they are on paper, in my book, not in my heart. What we all agreed; was that those challenges made me better not broken.

Get a journal and try it. Let the tears fall just like the words, on the paper.

Find out more about P. Allen Jones

Happy journaling!