Michele Rice
Michele Rice had always wanted to be a teacher. She graduated with a BA in liberal studies from California State Hayward and was employed as a pharmacy technician and a fourth-grade teacher while working on her credential at San Jose State University. She flourished in the classroom. Michele loved her students and being part of the educational system.
Unfortunately, as Michele prepared for her second back-to-school night, the future she had envisioned for herself would be stripped away. On Sept. 21, 2000, as she was walking out of her classroom, she slipped on a recently mopped floor. There were no cones or signs warning people to use caution.
She had landed on her right knee, twisted her upper body, and ended up on her back. The pain was immediate. The fall had caused injuries to her right knee, hip and low back. She had difficulty standing up or putting pressure on her right leg.
Despite the pain, Michele stayed for back to school night and even went to work the next day. Yet trying to teach while in that much pain was nearly impossible. She said goodbye to her students at the end of the day, not knowing that was the last time she would ever see them. She would also never return to the classroom as a teacher.
At the request of the elementary school’s principal, Michele went to see a workers’ compensation doctor immediately after work that day. She had an X-ray of her knee, was given pain medication to help with the discomfort and was taken off work. Three days later, no longer able to drive due to the pain, her mom drove her to a follow- up appointment. With the pain increasing since the last appointment, her doctor requested an MRI of the right knee. She was also given a Cortisone injection, prescribed stronger pain medication and told to attend physical therapy. Michele’s identity was quickly shifting from a happy and healthy fourth-grade teacher to that of a chronic, debilitated pain patient.
When the results of the MRI showed a torn meniscus in the right knee, she was sent to an out-of-network orthopedic surgeon. The new doctor disagreed with the results of the MRI. Instead of surgery, he gave her crutches, put her on bed rest and continued her pain medications and physical therapy. He felt confident Michele would be much better in five weeks when her follow-up appointment was scheduled. Unfortunately, that was not the case.
Over the next five weeks, Michele’s pain continued to worsen and her disability continued to increase. Despite multiple phone calls to the surgeon’s office to report the increase in pain, nothing was done to help her. By the time she saw the doctor again, she was in so much pain that she couldn’t stand to have the sheets on her bed touch her knee. The aching, deep, bone-crushing pain as well as the burning were nearly unbearable.
The doctor was shocked at Michele’s decline. He immediately ordered another MRI while bluntly saying, “I think you have RSD.” He brought in his associate, who agreed Michele had RSD. All her doctor said to her was, “I’m sending you to get a sympathetic nerve block for diagnosis confirmation.” Then he abruptly left the room. There was no discussion, no information shared and no treatment plan devised. Michele left his office stunned and uneducated on what was happening to her body.
The way she learned about her condition was through her dad. That afternoon he scoured the Internet at work, printing resources and information for her to read. She felt devastation, fear and validation as she learned that reflex sympathetic dystrophy (RSD), now known as complex regional pain syndrome (CRPS), is a neurological syndrome characterized by severe burning pain, pathological changes to the bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.
It was from this point forward that Michele began her new pain journey. The second MRI confirmed that she had, in fact, torn the meniscus in her right knee. However, when the sympathetic nerve block confirmed the diagnosis of RSD, her surgeon recommended not having surgery. She underwent countless sympathetic nerve blocks, epidurals and various injections. Yet Michele’s pain continued to worsen and spread through the right leg, hip, buttock and low back.
As she increased her medications to help with the escalating pain, Michele endured more invasive procedures, both for diagnosis and treatment purposes. A discogram discovered that the fall had led to two torn discs in her lower back. Now believing the RSD was quickly spreading, her doctor suggested she visit a specialist that flew to the Bay Area from Santa Barbara to see patients a couple of days a week.
She agreed. Michele was willing to try every treatment offered to her – no matter the side effects – in an attempt to get better. Thus began many prolotherapy injections in her right knee and hip. These were extremely painful, despite sedation. While in theory injecting an irritant solution into an inflamed joint or tendon should trigger healing and relieve pain over time, this was not the case for Michele. Instead, prolotherapy worsened everything tenfold.
Feeling as though they had nothing to offer Michele, her doctors at the diagnostic and treatment center referred her back to her original care program. In the Kaiser system again, she ended up in the integrated medicine department for chronic pain. By this time, Michele was dealing with severe depression as well as pain. She quickly began to see a pain psychologist and found herself being passed from one physical therapist to the next when she wasn’t progressing. Medications, ultrasounds, TENS unit, cranial sacral therapy, sound wave therapy, pool therapy, creams and patches, more sympathetic nerve blocks and epidurals, as well as a twice weekly pain management class were all tried. Nothing could stop the increasing pain, depression and fear.
The medications prescribed to her during this time were countless. They included high doses of methadone, opioids and other narcotics, anti-nausea, anti-seizure, laxatives and stool softeners, antidepressants, analgesics, benzodiazepines, corticosteroids, muscle relaxants, nonsteroidal anti-inflammatories and sleeping medications. Taking these medications led to other problems. To counteract the serious side effects, she needed more medications. Thus, a continuing, unhealthy cycle began.
She dealt with extreme fatigue and endured short-term memory loss. Her personality disappeared. Once sociable and animated, her voice no longer had inflection – everything was flat. She experienced migraines, nausea and dizziness, and gained over 100 pounds due to being inactive. She also suffered through multiple corneal abrasions and dental issues as side effects of the medications.
One particular medication triggered such severe hallucinations that Michele developed posttraumatic stress disorder. It took months for the adverse reaction to subside. During that time, Michele, who was in her thirties, slept with her parents in their bed. She was unable to even walk into her own bedroom where the hallucinations had begun.
For seven years, she didn’t have a period. The doctors weren’t sure why but felt it was probably due to the high doses of medication she was taking. She also came down with serotonin syndrome. This potentially life threatening drug reaction causes the body to have too much serotonin, a chemical produced by nerve cells, in the brain area. Thankfully, an endocrinologist, whom she was seeing for excessive sweating, took her off one of the antidepressants, and she suffered no further complications.
One of the worst side effects Michele faced was opioid-induced constipation (OIC). OIC debilitated her. With widespread RSD, being constipated flared her symptoms in her low back, abdomen and butt cheek. She saw a gastroenterologist who prescribed various forms of laxatives, fiber and stool softeners. Nothing worked. She tried suppositories but could not tolerate the horrific pain they produced. For a couple of years, Michele went to the emergency room weekly because of impacted bowels. In tears and completely mortified, a nurse would administer an enema so she could release her stool.
Each day she fell further into despair. Wheelchair bound, she lived with her parents, as she needed constant help and assistance. Her hypersensitivity meant she couldn’t wear pants or shoes. Most days, she never left her bed, even opting to have meals in her room. Michele was unable to drive and her social life was nonexistent. Extremely depressed and fully isolated, she was in desperate need of help.
After undergoing a lidocaine infusion that did nothing to stop the pain in her leg, her doctor told her that the RSD had centralized. He referred her to a chronic pain management program at San Francisco Kaiser.
For eight weeks, Michele and her mom stayed at a hotel in San Francisco to attend. There were individual and group sessions that focused on a variety of non-pharmacologic pain management skills. She participated in relaxation and positive thinking, Tai Chi and acupuncture, Feldenkrais and biofeedback as well as strengthening and stretching exercises. She even began lowering her high doses of medications. It was an intense two months of looking at her current state and trying to find more productive ways to cope so she could live a better life.
At graduation, the team showed a video of her progress. She knew being able to get on the ground and stand back up was a huge accomplishment, even if using a yoga ball for assistance. However, Michele still used a wheelchair and relied on seven medications plus 140mg of methadone each day. She continued to battle depression and suicidal thoughts. While there was improvement, it was not long lasting.
In 2005, Michele was sent to a doctor at Bay Area Pain & Wellness Center in Los Gatos, California. After her initial consultation, she went through an extensive evaluation process to determine whether she would be a good candidate for their functional restoration program (FRP). An FRP is designed to help those suffering from pain reclaim their life.
These programs typically follow a comprehensive, interdisciplinary pain management approach that empowers a patient to regain the ability to function within their lives, relationships and work. Here she would be provided strategies and skills to manage her pain allowing her to enjoy improved functioning and better quality of life through an interdisciplinary approach.
After the evaluation, Michele and her mom met with the doctors at the clinic, the physical therapist and the psychologist to formulate a plan. An important aspect of BAPWC is making the patient take an active role in the treatment plan. Part of the goal was for Michele to break free from a “patient persona” and begin to see herself as a person again.
It was during this meeting that Michele had an “aha moment.” She finally realized the medicines were not helping her. Even with the drugs, her pain level was a staggering 10. It was decided that she would first detox from methadone in the safety of a hospital setting. The methadone was drastically impairing her ability to function. It clouded her mind and made her zombie-like. Michele would literally fall asleep mid-conversation or even while chewing food. While all her medications were causing havoc in her body, the methadone had to go first.
For two weeks, Michele endured horrific withdrawals in the confines of a local hospital. Initially, it was the excruciating pain and anxiety that was hard to cope with, but there was worse to come. The plan was to switch from methadone to suboxone. In order to do that, all the methadone had to be out of her system so as to not cause even further withdrawal when the suboxone was administered.
Unfortunately, Michele experienced full-blown withdrawal. She felt like she had bugs crawling all over her and she could not stop moving. Even though movement caused her severe pain, at one point she was crawling across her own bed – as well as that of another patient – trying to crawl out the window. Her blood pressure and heart rate kept skyrocketing. When nurses could not get an IV into her vein to administer ativan, her doctor was called. Thankfully, he was able to place an IV in her arm, which stabilized her over time. She was now ready to begin attending the six-hour day program.
Each day Michele spent an hour in physical therapy, occupational therapy, art therapy, wellness class, doctor lecture and group psychotherapy. It was a grueling schedule that left her simultaneously exhausted and invigorated.
In the past, physical therapy had been challenging for Michele. She felt like most of her previous therapists dismissed her when she failed to make improvements. Thankfully, her new therapist, Rachel, was an angel who never gave up on her and constantly motivated her to keep trying.
Every exercise was modified so Michele could succeed each day. During the hour, Rachel would break up physical movements with breathing exercises as well as arm and abdominal work. As her tolerance improved, her fears lessened. It was then that Michele began making strides in straightening her right leg, which had been bent for many years due to the pain in her knee.
Occupational therapy taught her how to do everyday tasks again like proper bending and lifting. Every part of the program was based on her personal goals and needs, so Michele learned to strengthen and stabilize the body. She also worked on how to maneuver stairs.
In art therapy, individuals learn to express emotions without words. The goal is to teach self-compassion and self-healing through the creation of abstract or collage works of art. Michele had never been an artsy person. She was a perfectionist who liked beginnings and endings, so the idea that art therapy was about the process and not the finished project was difficult for her to accept. She gave Christine, her art therapist, a lot of resistance. Thankfully, Christine never let her skepticism to the program bother her. Instead, she kept encouraging Michele to just trust the process and let go of thought. And finally, that is what happened.
Art therapy has now become an integral part of Michele’s life. She is amazed at the feelings and emotions she never knew she felt that her art has brought to the surface. To be able to release the rage and pain has been very cathartic for her. In fact, Michele has discovered so much about herself that she continues to attend the class each week. It is her outlet to express the journey and move forward.
Wellness instruction focused on meditation, guided imagery, Tai Chi and deep breathing techniques that could aid her in managing the distress that often accompanies chronic pain. The doctor lecture usually dealt with topics such as nutrition, how drugs affect the body and medical updates. Psychotherapy group classes centered on different issues every week. Some of the topics included sleep hygiene, how to explain your pain and finding vocational resources.
Each week Michele found herself growing. By her graduation, she was mentally and physically stronger. She could get up and down from the floor without needing assistance from a balance ball. She was working on stairs and walking. Her balance had improved, and she was able to stay awake through the day. Michele gained a safety net through BAPWC – she had friends and a new family she could lean on. Anytime she needed, she would be able to use the resources the facility had available. It was as if a new Michele had been found – she had created a new purpose and identity that made her proud.
“This program and the people connected to it saved my life. I don’t know if I would be here today without Bay Area Pain & Wellness Center. And I don’t say that lightly. They gave me back my will to live.”
Six weeks after graduating from the program, Michele suffered a huge flare and her pain levels shot through the roof. Nothing she did made her pain any better. After about a year, her doctor told her that it was no longer a flare. This would be her new pain baseline. Instead of fighting it or waiting for it to pass, she needed to find a way to accept it and move on. It was around this time that Michele faced another health blow. Secondary to RSD, she had developed fibromyalgia, a condition characterized by body-wide pain and tenderness in the joints, muscles, tendons and other soft tissues.
In 2007, Michele moved out of her parents’ house and into a low-income apartment. She now no longer needs a wheelchair unless at the airport or somewhere that would require a long-distance walk. She is wearing pants and shoes again though oftentimes it is still very painful. In the past few years, she has traveled to Ohio and Chicago by plane to attend a wedding and visit friends. Michele also took a specialized driver’s training program, which taught her to drive with a left foot accelerator. Her workers’ compensation insurance company bought her a car that she can drive with her disabilities. After 13 years of not being able to drive, this newfound freedom has given her back her wings.
Besides regaining her independence, Michele has worked with her doctor to lower her medication intake. She is now off all her daily medications except for an anti-seizure medication taken for nerve pain and an antidepressant. These two she will stay on, as she didn’t cope well without them. Despite being proud of herself for no longer needing the majority of her medications, it is still difficult for her to concentrate and focus, and she has issues with short-term memory loss.
Overall, Michele has been doing well for two years. Yet getting to this point was a journey that involved more than just learning to cope with the physical aspects of chronic pain. Trying to accept her new reality meant she had to grieve many losses while dealing with feelings of hopelessness, depression and anger. Her greatest challenge continues to be not getting stuck or feeling consumed by the negative. Each day she makes it her goal to connect with the good in her life so she can stay focused on creating new hopes and dreams for her future.
While extremely difficult, being forced to let go of what she wanted in her life – especially knowing she will never be pregnant – Michele is learning to find happiness. Becoming involved with advocacy and volunteer work has been instrumental in her healing. It fulfills her to mentor others suffering from chronic pain. As a regular speaker on the graduate panel at Bay Area Pain & Wellness Center, she shares her story as a way to offer hope and support to those currently in the functional restoration program.
Besides the strength and encouragement she has received from family, friends and BAPWC, Michele relies on various online support outlets for a sense of community. RSD/CRPS California Support Community and The RSD Living Room have helped her find a new purpose. Not only has she formed strong bonds and connections with others with RSD, but she is now also facilitating the San Francisco Bay Area RSD/CRPS support group meet-ups. While she may have had to give up teaching elementary school, Michele sees now that she hasn’t had to give up her dream of teaching … it is just in a different package.
If she could offer any advice to others with pain it would be to never give up hope. “You must grieve your old self so you can start fresh. While previous dreams may no longer be possible to attain, there are new ones to find that can hold just as much meaning and fulfillment. Try to not focus too long on what you can’t do, but rather make that shift to look at what you can do. There is always something to be grateful for in every day.”
She wishes the public were less quick to judge those who are disabled. Instead of looking for reasons not to believe, Michele longs for a kinder, more compassionate world. A society that is mindful of the fact that those suffering the most may be the least recognizable. Pain is invisible.
Chronic pain changed everything in Michele’s life. She lost her career, her dreams for a family and even her will to live at times. Yet no matter how often she got knocked down, she found a way to stand back up. Her pain might worsen, but the tools she has learned to use, in conjunction with her newfound mental state, allow her to cope better.
Michele Rice is a strong, resilient individual. Having grown and learned a lot since her injury, she pushes herself to continue finding new things to strive for – new reasons to be happy.
“I’d say the biggest change in my life is the new sense of hope that I have in being able to live a happy life despite chronic pain. I know it won’t be the life I originally planned for myself, but that doesn’t mean it can’t be a good life.”
RESOURCES:
Bay Area Pain & Wellness Center: http://bapwc.com
The RSD Living Room: https://www.facebook.com/rsdlivingroom
RSD/CRPS California Support Community:
https://www.facebook.com/groups/176484932503177/