By Suzanne Burnett Stewart
Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved on my first attempt and that doesn’t happen often.
When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years. We don’t want her to have to tell her story to even one more person.” I was approved and then things got medically worse from there.
In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light. Within seconds, our lives changed forever!
I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams.
I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation. Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries. I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction. I endured many hours of MRI’s and other more invasive tests.
After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker. As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.
In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners.
Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it! After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic. I had first gone to the pain clinic for: cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more.
The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.
Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were: “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more.
Nothing has improved very much, in those areas since that time. As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now. I cannot remember movies and can see the same movie several times. If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told. I feel very bad when I meet new friends, especially online “friends”. When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report! I have recently been diagnosed with Gastroparesis and you can’t see it! Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”. It is what’s happening on the inside, that is important.
The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”. Since then, it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting. I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision, extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.
I went to University and graduated with honors in Sign Language Studies/Interpreting. I worked for a local school district’s Hearing impaired program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hearing Impaired person with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data. Now I depend on my smart phone, using: Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.
I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!! Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.
Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children. Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).