This entry revolves around the continuing saga of treating my tick-born illness(es) and trying to get to a place of wellness in many respects. I am continuing to see a Lyme Literate MD (LLMD) but also attempting various means of physical therapy. Moreover, next month I FINALLY get Social Security Disability Insurance to physically hear my appeal and tell me to my face why I do not warrant assistance, particularly if it proves to be a bridge to something better.
For the past few months, my LLMD has had me take Clindamycin, upping the dosage and adding Malarone to the protocol. Apparently, he will want to get even more aggressive (!?) next visit. The co-infection Babesia seems to be viewed as the most serious threat and therefore targeted first.
I can literally see why, even the view of several medical professionals that my swollen/discolored/cold right foot directly relates to a capillary problem of blood flow. Babesia attacks and damages red blood cells, which can cause some portion to stick to the capillary walls. Theories of Raynaud's Phenomena have been presented to me as possible cause though I've never entirely fit that diagnosis, esp. since only one foot/lower calve is involved. It is possible that with the restoration of normal circulation in the foot, some range of motion or functioning would improve. Of course, this is also the goal of physical therapy, hence the two should go together.
My bloodwork also presented other issues, however, that may need to be addressed, sooner or later. First, in addition to Lyme, I tested marginally positive for the co-infection Ehrlichia. Not sure I have it, of course, but a number of LLMDs look at these tests by rejecting the notion that marginal means negative. That is, they do not accept that a patient is "a little bit pregnant." You are or you aren't. For some, a marginal result signals the need for retesting. For others, the testing should not be privileged over clinical observations and the patient's history/complaints. I do wonder if the borderline for Ehrlichia actually means that there is some other co-infection not discovered yet, one which gets slightly indicated on the Ehrlichia test but would really show itself if the lab looked for something else, be it Brucella, Bartonella, Mycoplasma, to name a few that are discussed in Dr. Horowitz's "Why Can't I Get Better?" Bottom line: figuring this all out is like putting a puzzle together. There can be many moving parts.
Another oddity was that I tested positive for the Epstein-Barr Virus. Not sure what that means. I do know number of people diagnosed/treated for Lyme et al. have this turn up, also. There is the possibility that tick-born illness has made Epstein-Barr not resolve on its own or it exacerbates symptoms from tick-born illness. The phrase "your mileage may vary" presents itself here as wryly appropriate.
One of Dr. Horowitz's assertions is that physical exercise needs to be included in any program of recovery. My goal has not reached that lofty a place; it remains more closely related to self preservation. I have a few scars to prove this. The most recent was a badly skinned knee related to a tripping incident in a parking lot. I even re-opened a week later and it seemed like a unleashed a wave of blood. It got down to my ankle sock and my shoe and pooled some on a tile floor in a cat sanctuary suite. I gave quite a show to the 20 or so cat eyes staring at me. I can report that Suite A of Tabby's Place in Ringoes, NJ, has zero vampire cats.
In any case, my formal physical therapy would have concluded, except that my doctor and the physical therapists agreed that I needed to be fitted with a customized Ankle-Foot Orthodics (AFO) device. It is the same device suggested to me last year but I lacked the funds to pay for it out-of-pocket. Because I qualified for the ACA Medicaid expansion in 2014, that issue no longer holds me back. Of course, I had to fight long and hard for this coverage initially (made at least a half dozen trips to the county agency to process my application paperwork) and for the past three months I have had to call the HMO insurer every time I filled a prescription to prove I did not have another healthcare policy. It's a great runaround of who to call and when; I have sent several rounds of faxes regarding my situation and I still have to have the same fights. It's about those agencies or companies trying to not spend money on you. Even if they admit a person has gotten them "dead to rights" it's only temporary. Expect to do it all over again. And again.
Indeed, while being fit for this device (involves plaster casting), I spoke to one of the company partners about this very problem. The attempts at denial of coverage are typical across the board, especially when those deciding what it reasonable to provide for a patient are paper pushers who have zero experience with the recipient. In his open case, Medicare has been avoiding payment on an orthodics device given for a patient who had his foot amputated. It strains credulity to think some removed person in an office knows what is medically required for such a patient than the doctor or orthodics people doing the fitting. When I was there for consulting, I had to walk for the fitter and show what I can and cannot do; he compared what he saw to what my doctor had advised. The doctor also watched me walk, along with the physical therapists who worked with me for a number of weeks and wanted me to have a particular type of device. To me, it would take a few phone calls or faxes to verify the same were true in the case of the patient who lost a foot.
I mention all this because it has been a talking point of late to insinuate that entities like Medicare, Medicaid and Social Security Disability Insurance are rife with fraud and waste. That is not my experience at all. The actual waste is more likely on the numerous appeals needed to actually get approved for coverage. My interaction with SSDI entirely supports this. Sure, part of the problem lay in the intractability of the CDC/IDSA to recognize what I have. But the falls I have and my employment situation are not normal -- not by a long shot.
I initially filed for SSDI in February -- of 2013. After one quick paper rejections, I pursued getting a SSDI lawyer (makes them money, of course, and few can win without one). After a second on paper rejection, I finally got a formal hearing. It's NEXT MONTH. Has my situation changed since I filed? Not much. Sometimes the meds make me physically quite incompetent (rather than being just incompetent) in terms of ambulation. Mentally, I've had some very sharp days but a lot of (imo) half-assed ones and even some dreadfully dull ones. I am still hoping I can "turn the corner" but if or when it happens is very unclear to me.
A judge will finally examine the evidence that has been assembled by myself and this lawyer. Those who wish to continue denying my claim have also called upon an "expert" witness. I have never met this person. According to background information I found, this witness seems to be a consultant who will state that "there is no reason why I cannot work." My response: why don't she tell that to the people who arranged for my job dismissal or refused to hire me?
That is, I would like to know what evidence she is basing her assessment on, for one. The evidence I have does not support this; that is, the theoretical "no reason" does not match the record of being not employed. No employer will say outright "we're firing you because you're disabled" but that does not stop an employer from finding a convenient means to arrange being let go.
In my case, my last FT employer had a faculty assessment of my teaching done and, not only used my disability against me, used it as a springboard for outright lies, all with the plain intent of painting me as incompetent. The assessment started out with the view that "I was not looking at the class." I have STRABISMUS. I look at everything by privileging one eye; it's a sideways look at everything. (I even had surgery to correct it but a few weeks after, the distortion came back; the surgeon say the problem was in my brain, not the eye muscles -- which is exactly what Lyme/co-infections do.) Based on this, the assessor blew it up into bogus claims.
One claim concerned classroom noise and the room being "the rudest class I have ever seen." This was bunk. I showed a film and walked around the room; there was nothing unusual. Furthermore, I have had my hearing tested in the past and it has always been very good. In fact, I hear the back of a room as well, if not better, than someone close to me.
Nonetheless, I decided to ask a former student of mine about this the following semester. He said he remembered the class (usually classes with film clips stand out and a film segment on the First World War was pretty stark) and said there was nothing out-of-the-ordinary about it. "It was like any other Gen. Ed. class I've taken." Now, if that assessment were not being written to engineer a rationale for getting rid of me (and I had good faculty reviews before), what other purpose got served here? (Given the information I received, I would have sued, except that I was well aware that in such cases people sue to keep their jobs. I had no desire to work for people who would pull a stunt like that, so I left.)
I recount this whole episode because it involves the pointed question of "Can I work?" To me, that was the type of job I should have -- grade at home, park by classes, limited ambulation. Of course, a lot of time has elapsed between now and then and clearly the employer did not want to answer that question affirmatively.
So what is left? For SSDI to blame me for being let go because an unwillingness to employe me is "not their problem." Whose problem should it be? If it's my problem, then enable me to deal with me and transition to some situation where my problems are overcome by medication or accommodation. I would be happy if I got better, got meaningful work and didn't need Medicaid, SSDI or anything. More than happy. I'd be the first to tell them, just like I dream of the day I can surrender my disability hang tag on my car because I no longer need it.
Yet before I can hope to achieve any of that, I need some kind of investment in me. Medicaid by itself is not enough. For the moment, given how I am, SSDI will stabilize my situation, which is the first necessary step if there will be anything beyond that.