I try to avoid most Western medical interventions that are offered to me. Many of my current health issues are related to previous medical interventions that failed. I’ve yet to find a doctor that considers all of my diagnoses before offering treatment. Luckily I have a naturopath who treats me like a human instead of a fictional representation of me on a computer screen. I also have a great Rheumatologist and a decent Neurologist.
However recently my Neurologist suggested Botox injections in my neck and spine to help alleviate some of the severe pain I live with daily. It’s really hard to turn down an intervention that has a potential to help with pain, which is the most difficult symptom I experience. A friend had Botox injections in her neck and over the course of a year, she was able to return to fully living her life. It definitely seemed like it was worth a try.
The first set of injections were in my neck, up my scalp and along my thoracic spine. The injections were given to treat Cervical Dystonia. After the injections I had a huge pain spike that lasted for several weeks. In addition it was accompanied by severe weakness in the muscles that hold my head up. I have Ehler’s Danlos and Chiari Malformation which I think the Neurologist was not aware of. Even if she had been, I don’t think it would have made a difference. Most healthcare providers consider these diagnoses ancillary and many don’t understand how they manifest in their patients. Everything is filed under Chronic Pain Syndrome and it is generally considered non-treatable, except perhaps with Lyrica, which made me feel suicidal.
After the first set of diagnoses, because my reaction was so severe, I thought about discontinuing the treatment. But the Neurologist had told me that some people don’t achieve relief after the first set, and some don’t see relief for an entire year. The injections are given every three months. I received the second set around the first of the year.
One week later I found myself once again in severe pain. The weakness was affecting my scapulas and they began to protrude painfully from my back. The pain was constant and unrelieved by anything I tried. It feels as if my scapulas are being ripped from my back, one side at a time. The Neurologist had reluctantly prescribed a short course of muscle relaxants with the admonishment that she would do it “just this once”. They helped somewhat.
The pain has been so severe that at times I feel sick to my stomach. My ribs feel constricted and combined with the pain I often find myself breathing in gasps. Multiple times per day my heart starts beating rapidly and with an irregular rhythm. It feels like it is jumping around in my chest and sometimes can last up to an hour. The irregular heart rhythm comes with breathlessness and dizziness. The only position that relieves the pain is lying flat on my back. I’d heard that Botox injections were helping a lot of people with Cervical Dystonia. But what if a person also has Ehler’s Danlos, Chiari Malformation, and a connective tissue disorder to boot? I did some research and found a recent journal article describing severe pain reactions when Botox injections were given to patients with Ehler’s Danlos and Chiari Malformation. It indicated that more study was needed and that extreme caution should be used.
In today’s medical system there is no time for doctors to read research. Patients are scheduled back to back in miniscule time slots that don’t allow for discussion. In spite of all the promises of the electronic medical record connecting physicians and patients, it leads to the opposite. After 6 years of chronic illness my medical record is extensive. I’ve collected maybe 12-15 diagnoses along the way. It’s all right there. But doctors don’t even have the time to look at a patient’s medical record to consider the other diagnoses. They must deliver specific treatment related to their specialty in a very small window.
The pressure for healthcare providers that comes from up above is non-stop and intense. The powers that be use the electronic medical record and other means as a way to monitor healthcare providers productivity. There is enormous pressure to complete activities like entering data into the electronic medical record. Although it is a cumbersome task to enter data and attend to all the drop down menus involved, healthcare providers are often not given time to complete this task. They must squeeze this time in somewhere or they will get dinged by the system. The system itself is much more of a problem than the doctors themselves. Even good doctors who want to provide good care are held captive by the profit margin.
I think it’s been about 2 weeks or so since I received the injections. Over the last two days the pain has decreased slightly, but not by much. At this point I feel like they are probably not the right treatment for me.
Another thing I’ve been thinking about lately is the term disability. When I was unable to return to work I was required to prove I was disabled in order to access my long-term disability benefits. The long-term disability company required me to file for Social Security benefits which I was also awarded. The term still troubles me greatly. I’ve always thought of a disabled person as someone who was paralyzed or in a coma, and I am neither. I was raised with a strong work ethic and honestly I have found great satisfaction in working in three different careers. I want to work again in some capacity. If I work at all, my LTD benefits will be cut off. Social Security grants me a trial work period which is nice. But what if I can’t work? What if I go back and end up in the position I was in when I was working before? I was in so much pain and still trying to be a decent parent and perform at my highly stressful job as a healthcare provider. I had to take opioids daily in order to remain standing. That life was no life at all.
I am verifiably disabled by the US government (which, by the way is no small feat). But I never consider myself to be. If I am forced to disclose my employment I say “I am disabled” and immediately feel shame. I’ve always held myself to impossibly high standards. Even after I’ve accomplished something big, I minimize the accomplishment and point to all the things that are yet undone. And ever since the illness began there have been more and more things that have been left undone. It seems a difficult task to find the balance between acknowledging the illness and how it affects me vs. expecting myself to perform as if I have no illness at all.