Update #3: 39 Weeks Into Treatment
Updated: May 12
It has been 11 weeks since my last update. Long-term antibiotics are tough on the body. This disease is tough on the body. These last 11 weeks have been full of migraines, headaches, facial pain, tremors, shortness of breath, difficulty walking, tinnitus, multiple rashes, skin pain, lower limb discoloration, dizziness, nausea, postural tachycardia, hand pain, multiple neuro symptoms, sore throats, albuterol puffs, tooth pain, fatigue, excessive neck pain and rheumatic symptoms. If you’ve seen my Pre-treatment symptom chart, it sounds a lot like the usual. These are my ‘Standard Variety’ symptoms; they were just more severe and flared. It correlated with my up-titrations of Clarithromycin (which is a good thing). Same with that nasty metallic taste which occurs a few hours post Clarithromycin, every time…without fail! The benefits of the drug outweigh how gross the taste is. Even though I feel so much better than my pre-treatment trends, the flares are hard to appreciate, the cumulative effects weigh on you. Just have to keep working through it. Luckily, I still have “good days” and live a life of gratitude. I capitalize on that as much as possible!
A lot has gone on. I broke this update down into two parts. The one you are currently reading is a general overview with breakdown of October and November, then a separate one includes December.
Around the time I published Update #2, multiple physical injuries had occurred. This has been a pattern over the last 3 years… short periods with no injuries followed by multiple debilitating injuries. It’s no surprise, I’ve been diagnosed with an Undifferentiated Connective Tissue Disorder (UDCT) and Inflammatory Arthritis. One of the major components of this disease are it’s disruption of connective tissue and cartilage. Both my hands were in braces. My thumbs were not able to go through range of motion, the small joints of my hands felt like concrete, my right knee was painful and swollen, my lower back symptoms flared (spinous process pain, quadratus muscle spasms, shooting pains into my right leg, lower limb numbness and tingling, inability to twist and bend and difficulty walking)…and my skin…yet again, developed a hypersensitivity reaction. It was a diffuse rash that progressed to an excruciating burn over the right side of my back and obliques.
Literally felt like I was minutes from blistering, as though someone was holding a torch to my skin. That was an experience I hope to never revisit.
This disease is the most challenging thing I have taken on in my life. The med schedule alone is a Full-Time job, not to mention all the collateral of symptoms and sequelae (any abnormality following or resulting from a disease, injury or treatment). I’m not exaggerating when I tell you I was less busy when I had a career, social life, dating life, my hobbies, travel, recreational sports, worked out, and was involved in outreach. My energy is much less now and with chronic illness, there are no reserves. Maybe that is why I felt less busy...It takes all I have to currently maintain. It is going to feel so liberating when we finally reach maintenance therapy. That’ll mean my medication schedule is more flexible and my symptoms are potentially resolved = more capabilities = freedom. That is going to be a damn fine day. These updates are getting harder and harder to write but ever so important. Similar to intentional procrastination… Not because I do not want to, it is because there is so much happening to my body, all the time. Hard to explain unless you’ve lived complex, chronic illness. Tapping into a constructive reflection of treatment progress is overwhelming. Having different parts of this path documented is well worth it, especially if it can help another individual in pain.
There continues to be subtle improvements.