Saturday, January 7, 2017

Sickle Cell Success....Nothing Less


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!

Saturday, February 27, 2016

Three Strikes You're NOT Out - Sickle Cell

This is an inspirational story of The Tyler sisters, who all got Sickle Cell Disease from both parents who only had sickle cell "trait".

This is why sickle cell testing is critical prior to getting married or having children, because it gives you valuable information. It will let you know (the probability) of having children with the disease. But don't let this testing deter can't fight love. If after you've married and had children, and  your newborn test positive for sickle cell disease there is still hope for your children.

Just look at The Tyler, managing and thriving.....also known as #blessed.

Find out what their doing through their foundation