Sometimes, it feels as exciting as watching paint dry, though sometimes accomplishing the smallest things, like sitting in a FIR sauna for 45 minutes, seems like running a triathlon. I cannot always tell if there is a good pain or a bad pain, if I am getting better or worse. Symptoms come and go and migrate. It is a frustrating existence and can easily grind your life down to practically zero. The point of it all seems distant and perhaps non-existent
I think there is a plan going forward. Can't see where I am going, though.
After much hoop jumping, I got a Medicaid card, a health card and saw my primary doctor. Some doctors I had I could see again, some I cannot. Had to get a new Ob-Gyn and fortunately she took my incontinence issues seriously enough to recommend a form of physical therapy for that. I am also in "regular" physical therapy to try not to be a danger to myself "walking" (okay, it's more like staggering sometimes). I went to see a new dentist and found I have a number of cavity issues in-between my teeth, yet I have been flossing daily with a wand tool. I am told many people with Lyme have tremendous teeth problems, some so extreme I could not imagine, so perhaps it is a weak area for bacterial/protozoan "success."
This also led me to seek out a dermotologist, as it became evident that I also had many unusual skin problems, from a record build of scalp crust that would not budge despite use of apple cider vinegar and other remedies to an itchiness around my neck and both ears that produced a scaly, rough and reddish surface. Add to that my cherry angiomas and other strange patches and off I went. Trying ammonium lactate lotion and an essential oil formula. Also got ketonazole cream for the fungus on one foot in between the toes I cannot spread well. I might see a podiatrist also. Later this year, I will see the cardiologist I have had since 2010.
I look at my "fortune" to be on Medicaid as an opportunity to do more than wait to get worse and qualify for SSDI, though I am still going forward with that claim, since I haven't had a job since late 2011. That is, money (essentially from my mother) that would have paid for bare-bones health insurance is going toward a new doctor, a Lyme specialist (LLMD) who was favorably discussed in one of the Facebook Lyme groups that I read.
This doctor is "only" about an hour away from me, which is a better situation than many who travel longer. Years ago, I traveled 250 miles RT to see a doctor over my situation. Based on the tests I had on-hand, he started me on Clindamycin, though he also took blood and wanted a follow up early next month.
Is this helping? Is any of it helping? There is no simple "yes" or "no." That is the biggest hurdle once you know what is going on. Of course, for many people, finding out takes years. I know that no "regular" doctor believes Lyme can remain after treatment or that relapse occurs. No, they'll tell me my stumbles and falls and need for an AFO (ankle-foot orthodic device) is all in my head. "Doctors like that make me want to shove my cane where the sun don't shine.
Those who decide who gets SSDI operate under the same "medical" guidelines, which should make my hearing soooo much fun. I guess I cannot wait till their "expert" says there is no reason why I cannot work. My question: if that's so, how come I don't have a job and several employers let me go as my disabilities became more obvious? I don't expect that person will have an answer; I expect they will penalize me for not having a job, rather than looking at the glut of a buyer's market where my CV/resume ends up in the trash.