Medically speaking, nothing much has changed since I last posted. The biggest concern is weight loss and lack of appetite, even though I force myself to eat. Otherwise, life has remained the same, except new medication allows me to sleep better, as well as awaken without wishing I was dead each day. Life is bearable – for now – even though my symptoms are getting worse, and I’m able to do much less. What little energy I have is typically spent caring for myself or dealing with utter b.s., like my last post.
Last month, I had nerve conduction testing, which is basically summed up to being shocked several times by a cattle prod. Afterwards, my nerves felt like road rash, and my regular symptoms have worsened since the test. It feels like my entire body is still buzzing like a power line. It’s affecting my brain again, so my writing, reading, comprehension, etc. is off. Writing this post is taking several tries on different days.
When I had my yearly appointment with my PCP, she announced that I’m a medical mystery. That didn’t sound very hopeful, but we were still waiting on my neurology follow up. Surprisingly, my neurological tests and MRIs showed no signs of nerve damage or anything else to cause alarm. Besides a small Tarlov cyst that shouldn’t be causing these symptoms, they saw nothing. I couldn’t believe it…. because why isn’t something showing?
The neurologist also said to consider any mold I may be exposed to, because of our humid climate and living in an old house. A few other things I’m going to run by my PCP is toxicity from tattoo ink and testing for another childhood virus that causes autoimmune disorders. I also have symptoms for other things that require genetic testing.
So… it’s back to autoimmune disorders and focusing on the Epstein-Barr virus. I have no idea what this entails, because the virus affects each person differently. EBV is linked to many autoimmune disorders, all of which the medical team has ruled out up to this point. However, with my symptoms closely mimicking MS or lupus, the neurologist said it’s not to say it won’t develop into that or some other autoimmune disorder in the future. So, it’s important for me to see a virologist, or immunologist, if one isn’t available. I haven’t had this discussion with my PCP yet.
There is so much to be said about EBV, and I often wonder if it’s related to endometriosis. That diagnosis was only a few months after I graduated basic training. Incidentally, I’d received multiple vaccinations within a short period of time. Now, I am not suggesting that vaccinations cause endometriosis; that would be absurd. But in my experience, I feel vaccines are a catalyst to reactivating things that some people already have, such as EBV, because it puts stress on the body. For people like myself with immune deficiencies, stress triggers an old virus lying dormant in our systems, in much the same way chicken pox later turns into shingles. This coincides with the pattern of getting sick during and immediately after stressful events, including common medical procedures. It happens with every surgery, every move, every new job, every breakup, or anything that triggers a stress response in the body. It doesn’t matter if it’s “good stress,” because it’s still stress.
Nearly a year ago I realized there may not be a recovery from this bout of whatever-is-wrong-with-me this time around. One night, I sat outside in the dark, because I couldn’t sleep. (My cat comforted me through everything, up until his passing.) Doubled over in pain and crying (before I found out I had E. coli), I came to terms with the possibility I had stomach or liver cancer or some other horrific disease I must have done to myself from drinking too much the past few years prior. I had never been that sick, in that much pain, so suddenly, for that long – so it must be something terminal that I caused, right?
Intense pain for long periods wreaks havoc on a person’s psyche. The experience provided me with empathy for those that choose a way out, because all I wanted was for the pain to stop. When pain is intense and literally on your nerves, it’s fairly easy to snap at small things, like noises or anything that wouldn’t normally bother you. It’s miserable both physically and mentally, and if you don’t have the emotional support, then why bother going on? If I’d had a gun, I wouldn’t be here to tell his story. It was also about a month into my experience with the worst doctor ever, so I was completely and totally hopeless. Now I’m only just “mostly” hopeless, so that’s a step up.
Somehow, I feel that scientists will discover a viral connection with depression. When they say depression starts in the gut, it’s where they really should be focusing, because an underlying pathogen is probably at the root of the cause. This would explain why it can’t be controlled in many people and why controversy about serotonin exists. Just my theory, based on personal experience with how my mind and body interact, especially over the past year and a half. Insomnia alone can make a person crazy. When my body feels horrible, I am miserable, and it shows all over my face.
Feeling awful most of the time is how I’ve lived the past 30 years, but I was younger and able to power through it. I also had longer bouts of feeling better. However, I learned back then I needed to pace myself with work and school, because I burned out easily. I noticed working short-term and project-based jobs worked best with my symptoms. Every single time I worked a regular Monday through Friday job, I was sick within the first three weeks to thee months on average. Sometimes my body and brain ached for months or years, then suddenly, it went away. There was also a noticeable decline in both my work and school activities.
My goals are no longer big, like taking a trip or looking for a new job out of state. Small things like running a few errands, hanging clothes, watering my plants, or mopping my floors are big things to me now. When I feel well enough, I push myself to accomplish goals, however small they might be.
Food prep/cooking and cleanup takes an enormous amount of energy, so I try to cook a pot of something to last a few meals. Right now, my health goal is to gain weight and build my immunity.
Keeping my mental health in check is a goal I constantly have in focus. For now, the medication is making me feel like my normal joking, goofy self. I’d forgotten that part of me existed.