Okay, you guys, I got a boyfriend!
I didn’t think it was possible. I mean, if you have at all been reading my posts through my site TheSickandtheDating.com, you know the tomfoolery that happens with trying to convince men that 1) I am a legitimate woman looking to go on dates outside of a queen-sized bed, and 2) despite some crazy medical challenges, my list of needs are this side of normal.
And really, referring to him as “a boyfriend” is a vague disservice. He tries hard to understand my fatigue and pain, and has adjusted to looking for closer or handicapped parking spots, or dropping me off at my building door and then looking for parallel parking himself. He recognizes the signs of the beginning of my fatigue – and now knows the deep fatigue, when my neck, arms and legs develop tremors, and I just need to be ushered to bed as soon as possible. We still find ways to enjoy our time together, like debating cartoons (he likes them, I don’t), binge watching shows (we are working our way through “Boardwalk Empire” right now) and petting cats at a local animal shelter (after which I have to change shirts for the ride home, then change clothes and shower when we get home because of terrible allergies).
The best part is the laughter. Sometimes he will look away, trying not to make eye contact with me because he knows that if he does, all is lost, but I can feel his belly jiggle from trying to suppress it. We laugh a lot. We tell each other often that we feel lucky that we found each other, and especially that we found each other online, because, sheesh… well, it’s madness. I couldn’t have asked for a better man. He is a keeper. I call him The Saint Paul – his name is Paul, he has lived in Saint Paul all of his life (except for a brief stint in northern Minnesota to earn his bachelor’s degree), and I’m pretty sure he’s going to be canonized as a saint for all of his good deeds.
The weird part is that we probably never would have met if I wouldn’t have gotten really sick. I never would have had to give up my house, my car, my job, my previous state, all that jazz. So the universe has a pretty good sense of humor and sometimes a little bit of mercy.
Okay, so the boyfriend front is covered. However, the whole diagnosis-is-in-the-can has proven to be a lot more tricky. I was relieved to get the Lyme disease diagnosis. It seemed to have me written all over it. I’m kind of taken aback at the amount of resistance I’ve come up against, though.
Only the naturopath who ordered the test has been 100% behind the diagnosis. At the end of April she also sent me for additional testing for co-infections, all too common and also very expensive because the testing is never covered by insurance or medical assistance. We are still waiting for the results. I’m also on a wait list for a Lyme-literate Western medicine doctor who is about a half mile away from me, but the wait list is so long that if I started walking now, I’d be on time if I showed up sometime around August. Too bad I’m not Forrest Gump on a run across the U.S. My thigh muscles would look fantastic, but I digress.
There are a group of four doctors at the University of Minnesota who have told me in varying degrees that they don’t believe I have Lyme disease.
With my PCP, I was able to have a frank discussion about how because one of the markers was a “faint positive” rather than a strong positive (like getting a pregnancy test back saying you’re kind of pregnant instead of really pregnant) and the others were strong positives in spades, that it seemed that the test results plus my symptoms indicated that I am dealing with untreated Lyme. I also pointed out that we are only as good as our tests – and nothing has been developed for Lyme for decades, and there’s still a lot of guessing going on. She asked that I proceed with sending my info into the NIH Undiagnosed Diseases program anyway. With the 350 pages of medical records I boxed up last Friday, I included a letter that started with, “I’m not crazy.” I’ll find out by August whether I’ll be accepted into the program to be studied.
The other three doctors were completely stumped and had little to offer me in terms of diagnoses. The final verdict was that I must have a “facial weakness” and that I should just stretch my facial muscles – never mind all of the other stuff like the tremors (which prompted one of the doctors to hold me up like we were doing a two-person conga line as he barked at me to perform various maneuvers) and the fact that the droop went away when I went into a horizontal position or I moved my head to the hard left to open up my shunt, allowing CSF to drain temporarily from my head. Those three doctors asked me not to return.
As luck would have it, this year’s 14th National Hydrocephalus Conference just happens to be in Minneapolis in June. The Saint Paul has taken two days off from work so that he can accompany me and be my eyes since I will lose a lot of my vision and depth perception from being upright for so long, but I feel compelled to be there. I even made two t-shirts pictured with this article, so I hope The Saint Paul is okay with a bunch of strangers staring at my chest for four days.
This conference will knock out a few things at once for me:
1) Shunt manufacturers will be there. I have had shunts from three different companies and I’m allergic to them all, and I want them to think outside the box for other solutions.
2) One of my placeholder diagnoses is normal pressure hydrocephalus, and I’d be interested in meeting other patients who have it to see if our symptoms are at all similar, because dang it, it’s really difficult being one in seven billion sometimes.
3) I want as many doctors as possible to see me and become interested in my case. Seriously, someone has to be up to the challenge.