THE RECOVERY -- PART 13

ESSAY BY HEIDI JOHNSON-WRIGHT

I was referred to Dr. P, an anesthesiologist, in yet another attempt to find a solution.

A pleasant, unassuming man, he made no guarantees but promised to do his very best to help. 

In a three week period, I went to him twice.

Both times, I lie prone in an out-patient O.R. suite, while Dr. P. and his team looked into my pelvis and groin with a fluoroscope.

Using a nerve stimulator, he located the place to inject me. 

The whole process took less than 30 minutes and hurt less than a flu shot.

Within two weeks of the second injection, I returned to swimming twice a week.

I was able to increase my walking to multiple 100 feet treks each day. 

And the worst of the blasted pain was gone.

It’s been nearly 18 months since my surgery.

I have very nearly reached my goal to return to the same level of activity I was capable of prior to getting a new hip and femur.

Make no mistake: my sciatic nerve still occasionally lets me know that it can be a very nasty SOB.

But I have gotten my life back. 

And there are still so many bullrings to explore.     

Heidi Johnson-Wright is an attorney and ADA professional. She lives with her husband in the Little Havana neighborhood of Miami, FL.

THE RECOVERY -- PART 12

ESSAY BY HEIDI JOHNSON-WRIGHT

I tried everything possible: PT, rest, electrical stimulation, massage, heat, ice, and meditation.

I took Vicodin round the clock.

Nothing worked and nothing mattered, as I grew more morose. 

Each successive pain management doc had a different theory.

I heard: “This was a big surgery; it will take a year to come back from it.” 

Or “It’s only been three (four, five, six, seven) months since the surgery. Be patient.”

On my office wall, I had a photo that my husband had taken of me in the bullring in Ronda, Spain on a trip four years before. 

There I stood in my best cocky matador’s pose, full of life. 

Superimposed over the photo were lyrics from a song by David Sylvian:   

“Life is a bullring for taking risks and flouting rules.”

Now each time I looked at the photo, I fought back tears. 

The woman in the photo seemed like a stranger. I simply could not imagine ever feeling so joyful again. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 13

THE RECOVERY -- PART 11

ESSAY BY HEIDI JOHNSON-WRIGHT

My leg was still very weak, but I knew this would improve. 

At last, it seemed that my life was on the road back to normal.

Then Thanksgiving came, and it was as if a trap door had opened and I fell straight into hell.

The next four months were a blurry nightmare of unrelenting pain. 

Some days it felt like battery acid on the back of my thigh, or I was being Tasered in the groin.

Other days a sickening achy, pulling sensation took center stage.

What never varied was the intense pain every time I stood or attempted to walk. 

Prolonged sitting brought on more pain.

I was only comfortable lying flat on my back with my legs elevated on a pillow.

My life was reduced to a miserable slog of trying to get through each day.

I constantly strategized so I could minimize any amount of weight bearing.

Months before at the rehab center, I could walk over 100 feet at a time.

Now I could barely manage 10 feet. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 12 

THE RECOVERY -- PART 10

ESSAY BY HEIDI JOHNSON-WRIGHT

By my second full day, I walked about 30 feet. 

By discharge day, I could walk 130 feet at a stretch.

I was sent home with a customized platform walker, PT orders and prescriptions. 

My husband took me out for Chinese food on the ride home to celebrate.

For the next couple weeks, I worked like a dog each day on exercises.

My hope was to return to work in five or six weeks.

All was going well until about a month after the surgery, when excruciating muscle spasms and nerve pain came out of the blue.

I had suffered with musculoskeletal pain for 30 years, but nothing could have prepared me for this load of bricks.

My surgeon confirmed that the bones were healing very well, but the pain was likely the result of his lengthening my leg about a half inch. 

The muscles and nerves were being required to serve a longer leg, and were temporarily rebelling.

He gave me muscle relaxants and a nerve med.

I was much better in a couple weeks, and eased back into a full-time work schedule.  

SAY CONTINUES TOMORROW -- FEBRUARY 11

THE RECOVERY -- PART 9

 ESSAY BY HEIDI JOHNSON-WRIGHT

That first evening in my private (!) room was heavenly. 

I took my first shower in eight days. I used a toilet instead of a bedpan.

I sat up in a chair while I ate a decent meal. I lay down on soft, clean sheets and watched Animal Planet.

I worked harder than I ever had over the next week. 

My day was rigidly scheduled from 6:30 am until 5 pm every day but Sunday.

I quickly learned that treatment protocols for joint replacements had changed considerably over 30 years.

As a teenager, I had to lie flat on my back for an hour after each hour I sat up because of concerns about swelling at the surgical site. 

For the first month after surgery, it was one hour up, then one hour down, over and over again. 

But now, the rehab staff had me sitting up all day long, regardless of how much my leg ballooned up by day’s end. 

One thing that hadn’t changed: I could sleep only on my back for six weeks, a miserable situation for a side sleeper. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 10

THE RECOVERY -- PART 8

ESSAY BY HEIDI JOHNSON-WRIGHT

I was expected to start weight bearing just a couple days after surgery. 

The hospital’s PT staff was unable to bring me the type of walker I needed to attempt to stand, despite my daily entreaties. 

Three days after surgery, a PT somehow persuaded me to walk a couple steps with nothing to take the weight off my legs but holding his hand. I’m not a bragger, but I guarantee even Dick Butkus would have wept like a baby from the amount of pain it brought me.

I knew it was hospital discharge day because that’s when the maintenance staff fixed the A/C in my room. 

The rehab facility had everything the hospital did not: highly skilled PTs, OTs, and nurses who knew how to care for hip patients, quality cable TV and functioning A/C with a thermostat I could control! 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 9

THE RECOVERY -- PART 7

ESSAY BY HEIDI JOHNSON-WRIGHT

Those seven days in the hospital were perhaps the longest of my life.

As the senior orthopedic resident said to me: “Consider this surgery a hip replacement, times two.” 

Twice the pain, twice the rehab effort, twice the recovery time. 

To even sit up on the side of the bed filled me with horrific, nauseating waves of pain.

It took one person to lift my torso into a sitting position while another held my leg and little by little, lowered it to the floor.  

Compounding the misery was the hospital’s -- how can I put this? – less-than-stellar quality of care. 

The A/C in my room barely functioned during sweltering August Miami days.

 Nurses repeatedly failed to support my leg while getting me off the bedpan, allowing it to slam back down onto the mattress.

I needed a special chair to sit in when I got out of bed. 

What they brought me was a glorified bar stool that 4 foot, 10 inch me would have needed a ladder to reach. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 8

THE RECOVERY -- PART 6

ESSAY BY HEIDI JOHNSON-WRIGHT

When I began to awake some six hours later, I was preparing myself for the worst: that the doc would tell me my femur had completely shattered in the process of him removing the old prosthesis. 

Perhaps he had simply shored me up best he could, but that further surgeries were needed, and I may never have a functioning hip joint again.

But the news was good. While my femur was as thin as a sheet of paper in places, Dr. T had gotten out the old prosthesis, implanted the new one, reconstructed half of my femur and part of my pelvis, and carried out the necessary bone grafting.

Now it was a matter of healing up enough in the hospital so I could then go to an in-patient rehab facility.

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 7

THE RECOVERY -- PART 5

ESSAY BY HEIDI JOHNSON-WRIGHT

After a few X-rays, Dr. T announced the verdict: the left hip prosthesis was pushing outwards from my femur to the point where it would inevitably fracture the bone. 

Maybe not today or tomorrow or next week, but it would most certainly happen.

And if it did, it would make a hip revision much harder to do. In short, if I didn’t have the surgery soon, I would be in a much bigger world of hurt than I had ever bargained for.

Six weeks later I found myself sitting on the edge of an operating table, dopey and propped against the shoulder of an O.R. nurse, while someone from the anesthesia team attempted to insert a needle through the calcified ligaments of my lower lumbar region.

 RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 6

THE RECOVERY -- PART 4

ESSAY BY HEIDI JOHNSON-WRIGHT

This appointment, however, was different.

In his most fatherly, reassuring voice he made it clear that it was time to consider a revision of the prosthesis in the left hip. 

Since I had chosen my doc because of his reputation as an experienced “revisionist,” I figured I was in good hands. 

That was until he told me that my arthritis-ravaged anatomy and thin, decalcified bones were too big a challenge, even for him. 

Which is how I soon found myself in the waiting room of Dr. T.

Doctor J. had spoken of Dr. T. in hushed tones of reverence, a pioneer in the reconstruction of joints ravaged by cancer or severe arthritis.

He pioneered a procedure in which he handcrafts a customized joint to each patient.

I figured that, when I finally met him, there would be cherubim and seraphim fluttering around him, shielding his face from the gaze of mere mortals. 

But he was just another guy, although a very tall and large-framed one, built like a college football linebacker, as so many of the best human carpenters are.

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 5

THE RECOVERY -- PART 3

ESSAY BY HEIDI JOHNSON-WRIGHT

What I kept pushing out of my consciousness was the reality that the hips weren’t going to last forever. 

Because even though I use a wheelchair most of the time and only walk short distances, the man-made appliances that had been driven with surgical power tools into the shafts of my femurs before I was old enough to drive were not made to last forever.

I made an appointment with my orthopod, Dr. J., and hoped upon hope it would proceed as usual. 

Which is to say, twice a year I would go to his office, and have X-rays taken of my hips.

He would say the same thing each time: that the prostheses had, over time, moved a bit out of their original positions – not uncommon for these types of old style implants. 

Yet as long as I was functioning without pain, I could go along my merry way and return in six months.      

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 4

THE RECOVERY -- PART 2

ESSAY BY HEIDI JOHNSON-WRIGHT

Fast forward 30 years: I am now 45 years old, an attorney, a disability compliance professional and a wife of 22 years.

My metal and plastic hips have served me well.

They have seen me through college, law school, and two decades of employment as a public servant. 

They were with me when I walked down the aisle on my wedding day, when I first rode in an all-terrain wheelchair down the sands of South Beach, when I ascended into the air on the London Eye, when I ventured across the floor of Monument Valley, and when I explored the Court of the Lions at the Alhambra.

But in spring 2010, I noticed a problem that just wouldn’t go away: when I would lie on my right side in bed, I felt a troubling ache in my left groin.

I tried every trick I knew: heat, ice, rest, stretching. 

You name it, I tried it. 

And all the while I prayed it was a temporary soft tissue thing and not a permanent joint problem.

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 3

THE RECOVERY -- PART 1

ESSAY BY HEIDI JOHNSON-WRIGHT

At age nine, I was diagnosed with severe rheumatoid arthritis.

It raged out of control for years.

Nearly every Christmas break, summer vacation and lengthy stretches during the school year meant ghastly orthopedic surgeries.

Surgeons would saw entire joints out of my body, then hammer in pieces of metal attached with screws. 

In between surgeries and the prolonged recoveries, I made the best of the life I had with all its limitations and chronic pain.

And yet I had friends and loved learning foreign languages and dreamed about traveling to exotic places someday.

I was 15 when I spent the month of June 1980 in the hospital, having both of my hips replaced, then the remainder of the summer recouping. 

Nothing could have prepared me for the breadth and depth of it, nor for the depression and anxiety I suffered, but kept hidden from my family and friends. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 2

GROWING UP IN PUBLIC -- part 6

Once I went to law school and got married, my time became very precious. Working as a staff attorney for a state agency, taking care of a house and finding time for writing is often all I can manage.

Consequently, volunteering with the Arthritis Foundation has taken a back seat to drafting contracts, helping to make our house more accessible and, in team with my husband, writing free-lance articles about people with disabilities and travel.

I don't really miss the fund-raising dinners or the staged photos with celebrities very much.

I had my time in the spotlight and I have my memories of television interviews, speeches before congressmen, and, of course, the Moose.

While I still have my qualms about using kids to raise money for charities, all in all, my experiences were positive ones. I gained poise, grace and public speaking skills that have helped me in my legal career.

And maybe along the way I touched the lives of a few kids with arthritis and their families who were as scared and confused as I was more than a quarter century ago when all I wanted was to do handstands in my back yard again.

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.

GROWING UP IN PUBLIC -- part 5

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

The Atlantic City trip was an awakening of sorts. A pair of young, adorable blond-haired twin girls had also made an appearance on the telethon. They were loved by the audience and I noted that although they had arthritis, they exhibited little, if any, physical limitations, unlike myself.

I was beginning to feel like an aging movie queen who had her close-up shot stolen by the pretty, young starlet. For the first time I began to have second thoughts about how children were used to raise money for charities.

My focus turned more toward public speaking and I traveled to such cities as Washington, D.C. and New Orleans for fund-raising events. I met senators and congressmen and made friends with people from other chapters across the country.

In the meantime, I was asked to write a column directed at kids with arthritis for the National Arthritis News.

The column addressed issues about coping. It featured a pen pal list so that kids could write each other and not feel so alone. Even after accepting my arthritis and meeting many others in the same boat, I could still remember how alone I'd felt when
I was newly diagnosed.

Throughout my teens, I never really had a remission from my arthritis. The disease continued to progress, forcing me to become the proud owner of bilateral shoulder, hip and knee replacements and also to have my ankles fused.

When college came along, my arthritis stabilized.
The damage resulting from the disease's previous fierceness, however, will always limit me physically.

I plan on a steady diet of anti-inflammatory medication the rest of my life.

I can walk only short distances and it must be with the aid of platform crutches. Longer distances require a motorized wheelchair if I'm alone or a manual chair if someone's around to push me.

Stairs are impossible without assistance, and then, only a couple at a time. I am able to drive a wheelchair ramp-equipped van with a seat that turns around so I can move from wheelchair to driver's seat.

I can do most of the things I like to do, as long as I pace myself and rest when I start to drag down.

TOMORROW: Poster Child Grown Up

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.

GROWING UP IN PUBLIC -- part 4

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

Soon my volunteer work became a regular part of my life. The Foundation asked me to be featured in a slide show titled -- what else? -- "Heidi." A photographer followed me around school taking pictures of my efforts to deal with the roadblocks of a typical day.

He also snapped a few shots of my parents and my miniature schnauzer.
When the slide show was being assembled, it was more convenient to hire actors to dub in the voices of my parents and me.

The actor hired to read my dad's part had a voice several octaves lower than my dad's and my mom and I laughed ourselves sick the first time we heard that deep voice paired with my dad's face.

No one else was aware of the dubbing and the otherwise excellent slide show has been used as a public education tool by virtually every chapter across the country. Even today I occasionally meet people at Foundation functions who are amazed that I'm "the Heidi."

My smiling face continued to appear on publicity material when I became the poster child promoting an alliance between the Arthritis Foundation and the Loyal Order of the Moose. For a while, the Ohio Moose adopted the Foundation as their official charity, later to be followed by the Moose nationwide.

I spoke at innumerable lodge dances and awards banquets and while I endured horrendously bad moose puns and sometimes inedible rubber chicken dinners, I made some wonderful, life-long friends -- of the artificially antlered variety, of course.
My publicity and public education work also included a trip to New York City for interviews by columnists from two newspaper syndicates and an appearance on a radio talk show.

I was enjoying the opportunity to travel and be in the spotlight and it felt good to find something that I knew I could do well.

One of my fondest memories is my appearance on the Arthritis Foundation telethon when it originated from Atlantic City, N.J. While it was fun being interviewed on national television and checking out the noisy, neon-lighted casinos, my favorite part was sitting next to falsetto-voiced crooner Tiny Tim in the hotel restaurant.

If only I'd had a camera.

TOMORROW: Child Celebrity

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.

GROWING UP IN PUBLIC -- part 3

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

Soon my folks were volunteering extensively with the local chapter and my mom was appointed to several committees on a national level for the Foundation. Years later, she co-founded the American Juvenile Arthritis Organization, a group comprised of health care professionals and lay people whose sole focus is the forms of arthritis that affect children.

Where was I in all of this? Like any young teenage girl, with or without a chronic health problem, I was obsessed with clothes, rock 'n' roll bands and, of course, boys.

But I was also in search of my own answers about my arthritis and what I could expect from the future. I sometimes thought about the thousands of other kids with arthritis facing the same problems. The next natural step for me was to begin volunteering my time and talents with the Arthritis Foundation.

It started out in small ways. I was interviewed by several local newspapers about what it was like to grow up with arthritis.

I'd tell them about my personal challenges and give them information and statistics about arthritis.

I was soon proficient at rattling off the numbers -- "a new diagnosis every 30 seconds, one out of every seven people, no known cause or cure." I always hated that last one.


TOMORROW: The Heidi Show

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.

GROWING UP IN PUBLIC -- part 2

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

By my mid-teens, I would get to travel to several major cities, be interviewed by top rate print and broadcast journalists in New York City and shake hands with famous politicians, such as veteran U.S. Senator Alan Cranston.

Not long after I began working to increase awareness of juvenile arthritis, I was delivering speeches before thousands of people and I even had my own column in a national publication.

Closer to home, my disease process was totally out of control, mostly because it was so tough to find a competent specialist in juvenile arthritis more than two decades ago. Finally, my parents found a good pediatric rheumatologist, he found the right balance of medication, and I found some stability and normalcy.

Once we could exhale for a while, we began to look around for some answers and ideas for coping. Soon my folks were volunteering extensively with the local chapter and my mom was appointed to several committees on a national level for the Foundation. Years later, she co-founded the American Juvenile Arthritis Organization, a group comprised of health care professionals and lay people whose sole focus is the forms of arthritis that affect children.

Where was I in all of this? Like any young teenage girl, with or without a chronic health problem, I was obsessed with clothes, rock 'n' roll bands and, of course, boys.

But I was also in search of my own answers about my arthritis and what I could expect from the future. I sometimes thought about the thousands of other kids with arthritis facing the same problems.

TOMORROW: Juvenile Arthritis

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.

GROWING UP IN PUBLIC

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

In 1973, shortly after my ninth birthday, I was told by my pediatrician that the pain I'd had for several months in my shoulder and feet was caused by juvenile rheumatoid arthritis.

The week I'd spent in the hospital undergoing tests had yielded a diagnosis. My parents were confused, scared and disbelieving that their little girl had "an old people's disease."

I was anxious to take a pill and return to practicing handstands in the back yard.
Within a month the pain had found its way to nearly every joint in my body. It hurt my jaw to chew.

It hurt my shoulders and elbows to pull on a shirt. It hurt my wrists to carry my
schoolbooks. It hurt my fingers to write.

It hurt my hips and knees to climb stairs. It hurt my feet to walk from my bedroom to the bathroom when I got up in the morning.

It hurt.

No matter how much I tried to deny it, no matter how many reassurances from my parents and doctors that a remission was possible, I knew inside that my life would never be the same again. And, it seemed to me at the time, the change was not for the better.

My friends and classmates treated me funny -- acting either overly attentive or strangely aloof. Old ladies at church wanted to swap war stories about heating pads and Ben-Gay.

Strangers in shopping malls stared when I limped or struggled with doors. And, of course, the pain -- there was always the pain.

Ironically, the illness I was fighting so desperately would eventually send outstanding opportunities my way.

TOMORROW: Poster Child

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.