What’s Next

AVN - Newest Year New Hip

After this blog post I'm going on vacation. My vacation will consist of renewed focus. I'm not going to talk about pain, surviving Sickle Cell or any of my past comments. After this blog post, I'm going to celebrate every new day, every moment of breath, every hour of life.

In a nut shell; going to surgeon, getting date, have surgery, recover and live.

This time, really live. 

A New Day...Again

September 2017 was supposed to kickoff Sickle Cell Awareness Month by having the "1st Annual Sickle Cell Awareness Event at my ranch. At the time, we were also going to kick-off the birth of  Joneswood Foundation, an advocacy, educational and sickle cell awareness organization.

A forest fire ended all of those good intentions.

But what it could NOT destroy was my goal: the birth of Joneswood Foundation. There's still work to be done to advocate and educate the world about Sickle Cell Disease.

So, it is a new day for us at Joneswood Foundation. We will continue the vision and continue the cause: Sickle Cell Disease Advocacy, Education and Awareness.

A Do-Over - New Year New Hips

#NewYearNewHips

Infection can be a burden in more ways than one. Always a possibility, "one out of a thousand" as my surgeon told me, I hit the lottery. May 5 was not only Cinco De Mayo, it was the day I got the news. "We're going to have to go back in," after that everything was a blur.

My mind raced through the last month of my supposed recovery. How I got a second chance, how my guardian angel watched over me, and I woke up to the aftermath...recovery. A month after surgery, with a wound that would NOT close, now "they have to go back in", Lord help me!!!!

I never thought to blame anyone, I quickly moved into survival mode. Let's fix it mode.

Looking back now I see it was all Gods plan. I had some personality problems that needed fixing.
-  I was an over planner, no one could have planned for this.
-  I didn't want to ask for help, I was forced to ask people to help me.

God forced my self-reliance to God-reliance in every aspect of my life.

When I asked God to show me the purpose of this "new" challenge, He showed me myself. The pride, the arrogance, I needed an attitude adjustment. He took me through (still taking me) the Truth where He said, "Humble yourself before the mighty hand of God."

I'm still in training, nowhere near done, but I see the destination...heaven.

Second Chance- New Year New Hips

Psalms 91

My #NewYearNewHip

Having lost my mother-in-law two days before surgery both my husband and I were numb. We were going through the motions like robots, not feeling our loss, not feeling anything.

In the pre-op waiting room, the nurse who was preparing me turned the television on and I saw something, I don't remember what, but it reminded me of my mother-in-law and I started to cry. I was mourning my mother-in-law's loss right there in the pre-op nurses’ station.

For the first time, I assumed I saw God’s plan. I believed that my mother-in-law was assigned to me as a guardian angel to carry me emotionally through the surgery and to help remove any pain, any sorrow, any fear that I felt. I believed she was acting in behalf of God for me and I felt her presence. At that moment, I felt safe.

Seeing tears and hearing of my mother-in-law's loss, the nurse tried to comfort me. She offered a reassuring hug and her condolences for my loss. But this moment was between me and God. My mother-in-law loved the Lord and I knew she was in heaven. 

My daughter Christina came into the room afterword and offered comforting words. I told her that I felt my mother-in-law was looking over me, protecting me.  Christina knows my faith, so she didn’t doubt that I felt I would be OK.

Then, my husband Rick came back into the room and I told him what I thought. He, being still numb from losing his mom one day and being here with me the next, it didn't register to him. He didn’t know my hidden fear which was right under the surface of my strong fearless exterior. He didn't understand because it was between me and God, as well.

Everything after that was a blur.

I remember them wheeling to me into the operating room, I remember the anesthesiologist standing over me asking me to think of someplace beautiful to which my response was "heaven", because part of me did not want to wake-up. I did not want to survive and deal with the repercussions of the aftercare conditions. Part of me wanted to unplug and die.

But my anesthesiologist his response was no we're not going to heaven yet think of a beautiful place where you want to go and when I put my mind to that focus I inhaled once twice and then I went into darkness.

Waking up after surgery caught me by surprise. For one thing I couldn't believe that I went through with it. Previously, I was on auto-pilot preparing for surgery. I had so much to do to prepare, I intentionally focused on my list of things-to-do and did not allow myself to think about the aftermath.

I don't even remember the sound of the heart monitor beeping or oxygen tanks filling, which I've heard before when I’ve had surgeries. I just remember being awake and thinking to myself, ‘I survived.’

I remember thinking that my mother-in-law watched over it all. And, I remember thanking God for not hearing my prayers “to take me to heaven.”

I remember my husband waiting for me to wake-up and when I opened my eyes he was the first person I saw.

Thank You Jesus for a second chance.

Can't Do Much But Laugh with Sickle Cell

New Year New Hips 

The days are getting longer as sunset is 1 minute sooner each day. My hip replacement surgery is not too far off because I also see new buds on trees signifying Spring is near. March is my daughter's birthday and my Niece, who loves love, wedding. Oh, how I love Spring.

Besides all this I'm trying to not focus too closely on the gory details of total hip replacement. I've turned my attention to my to-do lists. Borrow this, buy that, ask this person to help me do this, that and the other. So much to get settled.

         Now to explain the clown picture. 

My most recent doctors visit included a class I call, "What You Cannot Do After Hip Surgery". The instructor was a male nurse, Robert, who was an entertaining man who told stories about his elderly father who recently had hip replacement surgery. Robert explained rules that we all must follow; like don't bend past 90 degrees, don't cross your legs and don't point your toes toward each other. Of course, Robert's father managed to do them all. Robert also told us about a breathing machine that we must use to open our lungs after surgery to prevent pneumonia. Of course, his dad didn't want to use it. Robert was concerned about his dad's age and that pneumonia as a huge risk factor after surgery. Robert joked that he'd called his dad everyday to ask, "Are you doing your breathing exercises?" His dad's response was "HELL NO, that's stupid!" Thankfully, his dad recovered without any problems.

These funny stories put everyone at ease, considering the life altering surgery is scary business and the information is very important. I was happy Robert made us feel comfortable about the whole ordeal.

Next stop; my pre-operation appointment with my hematologist. I'm concerned about taking iron, which my surgeon suggested, and the risk of iron overload. Iron overload occurs when you get blood transfusions over many years. The excess iron doesn't get absorbed or eliminated from the body and could cause renal damage. I assume I'll get a blood transfusion (or two) during surgery, so taking iron may NOT be a good idea for me, considering I have gotten quite a few blood transfusions over the years.

I'm sure I'll get my questions answered. I'll continue to prepare for my next trip to the dentist, and then to my primarily care doctor, where I'll have my list of questions all ready for him

The saga continues. 

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.

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.  

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!!!!! 

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

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!

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 you...you 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 girls....living, managing and thriving.....also known as #blessed.

Find out what their doing through their foundation
 

MTS Sickle Cell Awareness Foundation 

 

2016 - New Year - New CDC Pain Guidelines

So many new possibilities for people with sickle cell disease. The medical community is tripping over itself to claim "The Cure", but until we ALL can live pain-free, I stay on the mission.

We have a new generation of people with sickle cell trait not knowing the facts about possible challenges they may face. We have to be transparent with the truth, however uncomfortable. Again, that's my job.

Here's some truth, New CDC Chronic Pain Treatment  Guidelines open for comment - The CDC has posted the Guideline for Prescribing Opioids for Chronic Pain, along with supporting documents on the Federal Register for a 30 day public comment period ending January 13, 2016.

The notice is on the Federal Register - 31375

New Perspective- Living With Sickle Cell

This picture sums up my summer of 2015.

A trip to Utah to meet my newest granddaughter Kyndal, led to a health scare that I must take seriously. Utah, at 4400 feet elevation, is bad for me in the winter. Winter cold mixed with lower oxygen levels is not good. I know this. But it's June, my birthday month and I just HAD to see my baby be born supposedly on my birthday. Neither happened and everything went downhill quickly.



It's all better now, but it gave me a new perspective....I want to live. I MUST do EVERYTHING right, then put the rest in Gods hands. My granddaughter lives in Kansas now, elevation 1230 feet. So elevation problem solved.

I'm getting back to family, friends, and advocating for people with sickle cell disease......and staying the heck out of Utah!!!!!!!!! Finally!!!!!!!

Sickle Cell Does Not Win!

I've grown a lot since this high school picture and I've learned some hard life lessons. I conquered the world, best I could, with an unbeaten strength, the grace of God and the willingness to never give up.

Since that day a lot has changed. One thing that hasn't changed, is my resolve that Sickle Cell does not win. I resolve this every morning that I wake up in pain, and every night when I thank God for His strength. I've missed some things, but not my resolve to keep living, keep giving, and keep praising. 

As my journey continues into membership in AARP (Ameican Association of Retired People), I look forward. I ask myself, and God, What else can I do to educate, inform and speak for people with sickle cell? And I wait because everything I do now takes longer & my strength.

The answer is blood. People with sickle cell need blood, need donors, and need help with the gift of life that blood offers. I love blood donors, and marvel at their various reasons why they give blood. And I Love it! 

So, today I'm a blood donor advocate. I volunteer even when I'm in pain, because someone might receive blood that will save their life. Thank you Lord for my second wind.

Find out where you to donate blood and save 3 lives with 1 donation 

www.redcross.org

www.redcross.org/blood

You Can Do Anything Despite Sickle Cell Disease

I have a new hero and his name is Billy Garrett, Jr., and he's proving that we can do whatever we put our minds to.

He proves this on DuPaul University basketball court every week. He's my hero because he is an overcomer and refuses to let Sickle Cell stop him from achieving his goals. Check out Billy's inspiring story and don't forget his name Billy Garrett, Jr. 

My Purpose - God's Plan - Sickle Cell

Celebrating the man and his quote that began my journey.

# IOnlyCryAtNight

www.pallenjones.com 

New Year - New Sickle Cell Education Committment

 Education is Critical 

Advocacy is Essential            Ignorance is Unacceptable 

We are Overcomers

See what Sickle Cell Warriors are doing in the USA that got the President's attention. 

My theme song for 2015 

   

American Society of Hematology - Sickle Cell Awareness

The American Society of Hematology had its annual meeting in San Francisco, Ca this past week.

Sickle cell disease was on the agenda and Dr. Dubaun gave an account of our struggles during his  Ernest Beutler Lecture Series presentation.

Take a look at the images of the people who help us live.

Flicker images here.

Sickle Cell & Bioethics - What is it?

At the Johns Hopkins Berman Institute of Bioethics there is a vision of hope.

Specific to Sickle Cell, there is the VISION OF HOPE: INTEGRATION OF PALLIATIVE CARE IN CHRONIC PEDIATRIC DISEASE

The Vision of Hope Project builds on the curriculum developed by the Initiative for Pediatric Palliative Care (IPPC) to help facilitate the learning of practices in providing comprehensive and integrated care for adolescents and their families.

What - originally piloted in a 2.5 day retreat-style and subsequent 60-90-minute in-service trainings

Where - at selected children’s hospitals throughout the eastern US.

Why - a holistic interdisciplinary model of care that incorporates emotional, spiritual, developmental, and physical dimensionsotional, spiritual, developmental, and physical dimensions.