My Bionic Hip

Greetings, Hola, Bonjour, Ciao, Olá, Hello and blessings to everyone near and far.  I dream dreams of being well and ACTIVE.  Only in my dreams do I get the chance to be active and a physical risk taker; without enduring physical consequences.  In my dreams I can skateboard and jump trampolines, with my nephew.  Go rock climbing, and ride bicycles with my husband.  Take kickboxing with my sister.  Travel the world with my mother.  Pick up my camera again, and go on photography excursions with my brother.  Garner enough energy to keep up with my youngest brother and sister.  Finally go on my honeymoon.  As a young girl, dreams of my wedding were always magical. In them I'd dance and spin the night away the frills upon frills of wedding gown material floating up and all around me.  Spinning and dancing wildly until I collapsed to the floor in fits of laughter, and happiness.  My dreams were always merciful never imitating the cruel parts of reality and varied in one critical way.  There was no pain.  I wasn't shackled by pain or the physical limitations of my trauma addled body and necrotic right hip.  I dream dreams of a new hip.

My name is Myiesha Demery-Warden, I am 39 years old, very recently married to a disabled Naval Veteran and reside in Boston, MA.  I was born with a debilitating chronic illness, from which I have endured MUCH pain, trauma and suffering.  I have also experienced a litany of secondary complications, like Avascular Necrosis (AVN) which has holistically impacted quality of life and my relationships.  Frankly, I'm sick and tired of being sick, tired, always in pain and physically wasting.  I am a newlywed looking forward to all the joys of married life.  Thus I humbly join the GoFundMe community to ask for your help in funding Operation #MTDsNewGroove.  My groove/hip has been missing in action for 24 years and now I have a chance to reclaim it!  Dr. Stephen Murphy at New England Baptist Hospital is an orthopedic surgeon who performs a minimally invasive total hip replacement.  Dr. Stephen Murphy Surgery

Donations to operation #MTDsNewGroove will be used as follows:
$0 - Abundant Love and Blessings
$2200 - 3D imaging of hip anatomy (non-billable and requires payment upfront) Due by April 20th 
$1000 - 20% of medical care not covered by health insurance
$3300 - Accessibility Modifications to homes space.
$1000 - Post surgical support, assistance and rehabilitative aftercare.
$7500 - Total

With your help I look forward to embarking on the next phase of my life as a wife, best-friend and partner, stepmother, aunt, and a dancing woman in much less pain!    

First.  Before I continue my narrative I have to warn you.  My next disclosure is slightly T.M.I (To.Much.Information) and possibly not meant for the entire world wide web to read. However, my journey as a woman with a chronic illness continues to reaffirm how fleeting, laughter, love, joy and life can be.  So, for you and purposes of growth, I throw caution to the wind on the good chance my disclosure will spark a deep intrinsic understanding of the importance of always living in the moment and in one's truth.   At the very least, I hope it forges a connection between you and I and an affinity of understanding about chronic pain.  Ready? Here it is...

I can make music with my hips!!!   

Seriously? I know, awesome right, I'm 39, yet, I kid you not, I can pop, lock and drop it better than most video girls.  The dance many believe originated in the south during the early 2000's,  is much older and is actually my brainchild conceived in the early 90's.  Initially that may sound hard to believe, delightful, trendy, and some of you may even find it cool, but let me ASSURE you, "dropping it" originated differently than the media reports.   When I began popping and locking the only it dropping was my body, dropping to the floor, and landing in tons of teeth clenching PAIN, lol.  So when I saw the dance 10 years later I knew I'd been duped...darnit!  They turned my anguish into profit and I was left with a musical hip that couldn't seem to drop it, and haunted for 24 years by a dance and dream deferred.  Now I would like to put the whole thing behind me and move on to a new dance, a new groove, a new life and a new HIP.

At the age of 15 I was diagnosed with Avascular Necrosis (AVN) of my right femur head with a full hip collapsure.  Typically found in athletes, like Bo Jackson, this condition also afflicts people with Sickle Cell Anemia due to low oxygen nourishment to joints during painful crises. SCA Pain SCA 2.  The effects of AVN are devastating.  AVN Hip I lived on crutches for 3 years in high school, not cool.  ALL activity from normal to rigorous can cause an excruciating seizure of the hip joint.  In my frozen distress I am always reminded of the slightly comical commericial for lifeline whereby an elderly woman has fallen and cries out "I've fallen and I can't get up!"  Well, I often feel like and see myself as that elderly woman.  I am young in spirit, but physically old and fragile like these brittle bones.

My right hip pops, locks, cracks, and creaks.  Without warning the joint becomes frozen.  When in this position the inner joint feels like an old hardened rubber band that's resistant to fluid movement and prone to popping. The slightest bend of the knees, rock of the hip, alignment of the back triggers the fiercest pain, and pulls tightly on that old rubber band.  

After 24 years of degradation I've lost close to full rotation of my right hip.  I am unable to walk more than 5 blocks, hike, run, cycle, drive, skip, climb stairs, sit, lay, stand >3 minutes, exercise, swim, etc. without causing pain and discomfort.  This level of restraint impacts and has threatened my livelihood and happiness by not being able to be active with and provide for my husband, step-children, mother, nephew, and siblings.  I am watching my family experience life from the sidelines, and without me and longing for me presence.  The only treatment for AVN is a total hip replacement which entails removing a portion of the femur bone and ball, plus the hip socket and replaced with an artificial hip joint.  Hip Surgery-Animation  Hip Surgery-Graphic 

I'll tell you  SECRET, another thing I get to check off my to do list is my first dance as husband and wife!  I became sick and was hospitalized 2 weeks before my wedding.  I literally stepped out of a hospital gown into my wedding gown.  So I had to take it easy on the wedding day.  I am so excited because as soon as my hip is fixed I'll be able to dance with my two special men, my husband and my father! Your donations will help me achieve that dream. 

Donations to Operation #MTDsNewGroove will be used as follows:
         $0 - Abundant Love and Blessings
$2200 - 3D imaging of hip anatomy (non-billable and requires payment upfront)- Due by April 20th 
$1000 - 20% of medical care not covered by health insurance
$3300 - Accesibility modifications to home space
$1000 - Post surgical support, assistance, and rehabilitative aftercare.
$7500 - Total

Life with Sickle Cell Anemia which is akin to existing within enemy lines. Despite it all, I rise.  Often I have to tiptoe around my own body fearful of the 12am force feedings of excruciating pain.   Despite it all, I rise. At mid-day hours after the pain has loosened its death hold and I become semi-productive, reality rears its ugly head to make certain your audacious hope of pain deferred is checked. Despite it all, I swallow tears, screams, and brutal suffering to RISE.  Then once you believe you've Risen, the combat boots of reality stomps more pain into vital joints and organs like the ferocious beat of a chain gang.  By 6pm the thump thump beat of pain either dissapates to a tolerable vibration, or expeditiously renders the body useless.  And I lay flat on my back unable to move, cry, moan, swallow or even breathe regularly from the cruelty of parasitic pain.  12am may bring the return of the laser sharp pain, the worst congregation be that of sternal chest pain.  Or if fortunate the onslaught ceases and you slowly turn on your side, draw your knees to your chest and gingerly rock yourself into a shallow but grateful sleep.  
I've gotten thru my trials because I have the most remarkable family. My mother is amazing!  She's been my champion, advocate, advisor, educator, friend and mother throughout a lifetime war for self-actualization.  Because of her resilience I have learned how to presevere and succeed thru most obstacles.  Mom would affirm that I am Lillian's grand-daughter and that was enough said to Rise.  My father showed me thru imagery (photos) and words (letters, stories, conversations) who I was from young.  He affirmed the value of family and community and the larger world from very young.  I remember as a toddler having the most innovative toy which mapped Myieshas' world; rooting my existence as the center of a greater whole.  Thus I was always headstrong, wanting to experience everything and never adhering to medical limitations or fearing consequence of risks taken. My father had to learn to allow his daughter to experience life un-tethered.  A notion that goes against the law of nature of men/fathers as protectors and providers.   However by managing his fear of loss and giving me room to soar Dad gained a deeper understanding for his daughter and the impact he had in nurturing my spirit.  My husband although new to his understanding of my disability is a quick learner and naturally nurturing and empathetic.  My step-father, sisters, brothers, and nephew also provide strong support during battles with my health.  Too often I am raging against the dying of my body with very little recourse but with their help I am able to rise.  With your donations I am hopeful I can permanently rise.

         $0 - Abundant Love and Blessings
$2200 - 3D imaging of hip anatomy (non-billable and requires payment upfr ont) Due by April 20th
$1000 - 20% of medical care not covered by health insurance
$3300 - Accessibility Modifications to home space.
$1000 - Post surgical support, assistance, rehabilitative aftercare
$7500 - Total

Donations for the the imaging is needed by April 20th. Operation #MTDsNewGroove will remain ongoing until we meet our goal.  

Thank you, Gracias, Shukraan, Merci Beaucoup, Obrigado, and Grazie to everyone near and far.  It really warms my heart that you stopped by to read my story, learn more about Sickle Cell Anemia and Avascular Necrosis (AVN) and what it is like to be in chronic pain.  Thank you for your donations, they and you are much appreciated.

Peace and Blessings, from my family to yours,

Myiesha Demery-Warden & Family
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Teña Dem 
Quincy, MA
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