Life with a Disability

Originally from Michigan, I’ve spent most of my  life in Virginia and North Carolina. An avid writer, I now reside in sunny Florida.

Born with a congenital skeletal abnormality called bilateral congenital hip dysplasia/dislocation (also sometimes now called bilateral developmental hip dysplasia,) I was born without functioning hip sockets or joints.  I began treatment at the ripe old age of 24 months old. 

I’ve had a variety of procedures to allow me to walk, including multiple femoral osteotomies, acetabular osteotomies, a PAO, fractural lengthening/release of paoas tendons, bone realignment, notching procedures, bone spur removal, multiple bone grafts, avascular necrosis repair, and two total hip replacements.  Right now, I’m waiting on a hip revision to repair my 24 year-old right hip replacement, which has worn out. 

I’ve run the gambit when it comes to mobility.  I’ve walked with a limp, a waddling gait, and Trendelenburg gait.  I’ve had braces, body casts, and more surgeries and treatments than you can imagine.  I’ve had to use canes, dual canes, hiking sticks, crutches, walkers, rollators, and now, even an electric cart to get around. 

Throughout my life, I’ve had many physical challenges.  Severe muscle weakness and atrophy in my legs, and limited abduction are the biggest issue.  Multiple surgeries in the same areas have left me with nerve damage, and spondylitis has left me with a balance impairment.  But then,  about ten years ago, I started having some medical issues I simply couldn’t explain. 

First, came some very strange rashes.  My balance became more affected.  I started feeling a numbness in my hands and wrists.  I honestly thought that was because I use a rollator, and that puts so much pressure on your hands and arms.  It made sense, so my doctor and I didn’t explore it further.

I began to have generalized weakness in my legs and core, and much greater difficulty in walking or standing.  That isn’t so unusual for someone who has had so many surgeries.  My doctor sent me to have some more physical therapy.  It helped a little, but then it quickly faded, and the problem reappeared with more veracity. 

Then came the fatigue.  No matter how much sleep I got, I had trouble staying awake during the day.  We even looked into seeing if I had narcolepsy, but I didn’t have that.  Even if I went to bed at 8:30pm, I was still exhausted the next day.  The exhaustion never went away.

Again, we explained it away.  I was working full-time at a very demanding job and caring for my father, who had Alzheimer’s.  We assumed that was the cause of my exhaustion.  Truth be told, I was so busy taking care of my father and all of his medical appointments, that I started neglecting my own medical care.  I’ve paid a very heavy price for that.

Last year, after my father passed away, I moved to Florida, and just weeks after I got here, my medical issues became so intense that I could no longer avoid them.  My hands kept “freezing up” as I slept.  My fingers curled and were stiff and swollen.  I assumed this might be rheumatoid arthritis, because my mother had RA.  My back and neck became stiff.  My exhaustion made it almost impossible to do anything.

And then one night, I got up to use the restroom, and my back was “frozen.”   I fell, and ended up in the hospital.  The next weeks and months were a whirlwind of finding doctors in my new home state, getting in to see specialist after specialist, as we tried to figure out exactly what was wrong.

Some of the treatment helped a little, but it was all “hit or miss” since we really didn’t know exactly what was wrong.  After a seven month wait, I finally got in to see a rheumatologist. 

After reviewing all my medical records and history for the past twenty years, running dozens of x-rays, ultrasounds, bone density scans, and more labs than anyone can imagine, my rheumatologist knew exactly what was wrong.  I didn’t have rheumatoid arthritis.  I had a fairly uncommon autoimmune disease called psoriatic arthritis (PsA.)   My doctor felt I’d had this for at least 15 years.  It isn’t uncommon for PsA to be mis-diagnosed becasue people look at the symptoms and never put it all together to see the disease.

The PsA didn’t come alone.  It brought with it diabetes, high cholesterol, high blood pressure, kidney failure, liver damage, gallstones, connective tissue disorders, enthesitis, crippling arthritis in my fingers and toes, neuropathy in my feet, spondylitis, psoriasis rashes, thinning hair, dry, itchy eyes, blurry vision, dry mouth, mouth sores, inflammation, and stiff, swollen joints.    Some of these are symptoms of PsA, while others are co-morbidities.

I never in my life thought I’d wake up “sick” one day and find out that I was never going to recover.  That is the reality of chronic autoimmune diseases like PsA.  There are some treatments, but there is no cure. 

So that is what this blog is about – my journey through living with a lifelong disability coupled by a chronic disease.  This may sound discouraging and overwhelming, and truthfully, sometimes it is, but this is also the story of hope, determination, and forging a new life in the face of adversity.

I hope you will become an active participant in my story, by leaving your comments and sharing your frustrations and your uplifting experiences.  As my grandmother used to say, “A burden shared is a burden halved.”  Let the sharing begin!