Update #2: 28 Weeks into Treatment
Updated: May 12
[Symptom Charts below]
What the heck... I feel like I am in an epic time warp. That feeling where things are moving at a snail's pace yet everything around you is a blur, time just coalescing…hours turn into weeks and weeks turn into months, all at the blink of an eye. It is August 25th already...such a strange year. Been struggling for motivation to write an update, mainly because there are so many moving parts to think through, but hoping to keep this one much shorter than the last.
It has been a very productive few months since my last post. Let’s see. I am physically a little less painful and notably less hypermobile in certain joints (elbows are less hyperextended). My skin has improved elasticity (especially on my face), my photophobia is less severe and my depth of sleep is much more restorative. Have been able to communicate with family better, laugh a few times and occasionally have a good conversation with my family without feeling like I am going to pass out (although a good laugh depletes any available energy). I can have more impromptu conversations with neighbors and have been able to sing in the car ONCE for 30 seconds before my vocal folds started spasming (and I was coughing up a lung). Those that know me well, know I love driving the countryside and singing to my music…radio up, windows down, Pancake nearby!! What else... I am feeling strong while simultaneously being so weak. Exhausted. Motivated. Isolated. N95 masked (dueling pandemic and poor air quality from wildfires). Mentally a little less sharp. Some unsettling developments like mild confusion, disorientation, forgetfulness, some issues with executive function…easily overwhelmed, very singular (cannot multi-task), small panic attacks and dissociation…all part of the neurologic and neurocognitive aspects of Bartonellosis. Speaking of, I just signed a release of medical information for a Case Report.
I am 1 year older, which obviously means I am wiser, haha (am a July baby). That’s right, officially 38! What I would consider our prime… but instead of crushing goals, I am pretty damn stoked to put my clothes on without losing balance. My birthday was perfect, my pain was manageable. It was very relaxing, mom made it incredibly special. We spent most of the day on the back patio playing Cuban Domino’s listening to music. We finished out the day walking Pancake, saw a double rainbow then Face-Timed with the fam. I really feel blessed to be surrounded by so much love.
The newest development is excruciating and debilitating hand pain. With any repetition, my small joints become painful (almost feeling like they are lined with concrete), my fascia becomes so tight that my hand resorts to a flexed fist-like position, my distal forearm develops muscle spasms and my hands become useless. For example, there were days where holding silverware or the tv remote, texting a friend, washing my hair or typing on the computer was impossible. Massage, heat, and cupping of my forearm help significantly but the residual tendonitis-like pain recently landed me in hand braces.
Pancake had a scare in August but is fully recovered from an Acute Liver Injury (thank God). I love her. Cause unknown, her recheck bloodwork was normal, and her convalescent leptospirosis titers were negative!!!! She thankfully responded to supportive care and I am very thankful for her amazing internist, Dr. Karen Hilling at Aspen Meadows Veterinary Specialists! I could not be more thankful.
Mostly been a sedentary August, now a sedentary September, no recent walks with the Wildfire Pollutants. The Cameron Peak Fire is nearby, and our smoke has merged with that of the Pacific Northwest fires via the jet stream. On bad days Pancake even masks up with me to use the potty while I water the plants. I’ve become highly sensitive to many things and have to pay attention to Air Quality Index. Makes me sad thinking of all the destruction and displaced animals…Wildland Firefighters are a special breed! Also….the ER doc in me dies a little every time I see an owner running their dog in 90+ degree weather during a severe Air Quality Alert with all that nasty particulate matter…Really??? Make better choices! Moving on… Oh gosh, I am still gassy! BUT I have sl