This blog began as a way to document the ways I continued to have adventures in spite of my chronic health issues. For quite a few years after my primary diagnosis I really was wrapped up in the identity it gave me. I needed a shorthand to explain why my career dreams had totally eclipsed over a number of years, why I am not always available, and how I might be different from those around me.
However being quite determined to continue living as big as I can has really allowed me to shift that perspective. My health is effecting me every single day, but I am not my illness.
My body has always been the broken one. I remember being 5 or 6 and having the absolute worst pains in my legs. I would lay crying for hours. I remember seeing the Dr, who said they were growing pains, and had me take calcium daily. That didn't help.
I had a younger (half) brother who was the opposite of me. He was never sick. He would take a tumble and get right back up. He would totally ignore pain, and just keep going. As an adult he was in an accident on a scooter and broke his leg. They put in a metal rod, and sent him home to recover. He was walking, and working construction, within 4 days. He always said he wished he could give some of his strength to me. (In the end he needed some of my strength. I will tell his story some day.)
When I was 12 I first experienced a migraine headache. It came out of the blue, and was so intense I was hospitalized for a week while they tried to find the cause of my agony. I was vomiting constantly, and miserable. That initial headache stayed almost constant for 2 years. I saw so many doctors, struggled to complete schoolwork, took so many medications. My healthcare team at year 2 wanted to send me out to get a better diagnosis. There was talk of the Mayo clinic or a migraine exclusive clinic somewhere I don't remember. I would be pulled out of school and tutored at the hospital. I said no. I was in 8th grade at the time, and desperate to be normal.
So began my adolescence, trying to be normal but dashing from migraine to migraine. I studied biofeedback to help manage my pain, and kept trucking between demerol shots when the pain was at its worst. Sleeping for a good deep chunk of time was the only thing to turn down that dial. (I will report that with each pregnancy my headaches got SO MUCH BETTER! After my youngest was born I had to have a hysterectomy and then oopherectomy, and those hormone changes have almost completely alleviated migraines for me.)
I had terribly painful menstrual pain. I remember being unable to stand up in class when the bell rang because of the pain. I remember being curled up and vomiting because of the waves of cramps. As an adult I learded that this pain was caused by endometriosis. However as a teen, I was just told to push through that agony, the pain was a normal part of being a woman, and largely dismissed.
I had my appendix out at 16. My galbladder out at 21. (Every time you are put under general anesthesia takes a toll on your body.)
Around that time (age 21) I started to have teeth abcess for seemingly no reason. Healthy teeth with an abcessed root would swell up my face overnight. Through this era of repeated emergency root canals we learned that most of my upper teeth had something called a pulp stone. That is a calcium deposit in the pulp of your tooth. The tooth is unable to be fully numbed until that stone is pried out. So I endured repeated root canals without adequate numbing. I cannot really convey how traumatic that was. As an adult I can barely manage an exam shaking and crying, and have to have sedation for any dental work. I was fully awake, feeling every prod with the tool into my tooth. It was torture, literally. We didn't realize that the problem was probably really my sinuses, and there began a constant struggle between sinsus infections and abcessed teeth.
After becoming a mother they finally began looking into my menstral pain. I had multiple laparoscopies to remove adhesions and endometrial tissue.
My last pregnancy lead to a post partum uterine infection, re-hospitalization for treatment, 2 D&C's, the second of which perforated my fragile infected uterus. That perferation continued to cause terrible pain for 4 months, leading to a hysterectomy. (more anesthesia)
Goodness, reading that all is overwhelming. Yet that is really where things got more difficult.
I began struggling with chronic sinus infections. I had a single infection last over a year, with an endless stream of antibiotics and steroids trying to knock down the infection that never ended. We finally got health insurance, and I was able to see a specialist who immediately validated how sick I was, and scheduled surgery for asap.
I hoped to be better. I was training as a midwife, attending births. but really struggling with my sinuses still. Then I went to Louisiana as a voluteer after Hurricane Katrina. I actually was on another course of antibiotics as we drove down. I had no plan to be in the damanged area, as I was based in Baton Rouge. However I did end up driving into New Orleans a few days before the city was opened again to some residents. We used our Red Cross credentials to get in, with a very pregnant woman who I still call my soul sister, and hoped to find out the condition of her home and that of family members. I was in frail health, and exposed to an awful lot of mold spores and fungus that my body was not accustomed to, in a really stressful circumstance. So I returned home very ill.
I stayed sick. I was constantly doing sinus rinses, trying natural things between antibiotic courses. I saw a new sinus Dr who explained that my first surgery had been done with older, less precise and more invasive techniques. I was left with a pocket where infection was just constantly brewing because it did not drain. Another surgery.
I kept trying to guess what was taking down my health. I was also diagnosed with PTSD from my experiences after Katrina. Nobody is really prepared for that. However I recognize that it was impossible to expect myself to gracefully process all that happened while also struggling to just live through illness.
I finally was able to get into an alterantive health practice, where they did rapid labs and found that I had systemic candida. All of the antibiotics and steroids had caused an overgrowth of yeast. Though my sinuses had been swabbed for candida and that was negative, it had worked its way through my gut, and into my blood stream.They had never seen that level of candida in the blood outside of the ICU. I was immediately put on antifungal medication, and began an intensive 6 month candida diet under the supervision of a nutritionist. I was on 2 different Rx antifungals for a total of 12 weeks, and then we shifted to herbal antifungals and started rebuilding my gut. I worked so very hard.
But I never really got better. I was knocked down, and eventually diagnosed with the least validating chronic condition ever: Fibromyalgia.There was still room for some alterantive diagnosis (Lyme, Lupis, MS), but I was cleared of those, and was left to make sense of where to go from there.
What really caused the the full body oversensitivity of my nervous system and overwhelming fatigue? Was it the candida, or the surgeries, the years of illness, or was it just genetics? I will never really know, but it doesn't totally matter either. The outcome is the same.
I stopped attending births and thought that becoming a Medical Assistant would be easier on me than late nights helping babies arrive. I managed to get through that degree, and worked only a few years full time. I was the OB coordinator at a community health center, and LOVED IT. However it became more and more challenging for me to be dependable, for my brain fog to not impact my work, and I had to reduce my hours and leave that position. I tried a non-profit with fewer hours, and then that became too much.
It feels like since that point, my "career" has goals have just eclipsed. I was eventually determined to be fully disabled. I really enjoy working, having a purpose. I have been lucky to find a variety of small part time jobs that help me feel productive and of value. I often serve as a one on one caregiver with seniors or developmentally disabled adults. Short shifts, and just a handful of hours each week, help me manage to do more than just exist in my pain, and keep my chronic illness from negatively impacting my clients.However at times I don't work at all. Often the work of living in this body is full time.
I really thought that my pain was going to be as intense as it was forever. My fibromyalgia is like the ocean, with tides and waves. However there was other pain we dismissed for way too long, assuming it was just my bodies erroneous messaged coursing through my body. It was not until a move forced me to find a new Dr, who wanted to start from the beginning and evaluate my pain, that I found out that I have osteoarthritis in my spine. Top to bottom. I also have some bulging disks and nerves being aggravated by bone spurs. I was so stunned, and hopeful, that an aspect of my pain was TREATABLE in new ways.
Now I see that Dr every other week, and have an injection, nerve block, nerve ablation, or other procedure to reduce an area of pain on my back. Yes, every 2 weeks. When one area is calmed down there is always something else acting up. I consider a game of Whack-A-Mole every 2 weeks. Will we hit the right nerve to reduce enough pain, and what new area of pain will be revealed as we untangle the chaos of inflammation and screaming nerves in my spine? Some weeks I get some great relief, and suddenly have the luxury of being able to sit in any chair in the world! (We know which coffee shops, restaraunts and venues around town that have chairs I can't sit in usually. Chairs matter people!) Others not so much.
I still have that darn fibromyalgia pain though.
THAT, my friends, is the story of my body. I share this because I hope that others might be inspired by my persistence in seeking out adventures big and small, in spite of the meat suit I was issued this lifetime. If you are not living in a body that makes adventures difficult, then hopefully I have given you a better understanding of what others could be going through.
Chronic pain sucks. It steals light, it steals hope. It steals joy. It steals dreams. I resist.
