Key:
Ed. notes
My story and medical history
The present situation (scroll down if you want to skip to this)
I'm going to try to explain.If anyone is actually reading this blog, I owe it to you to try and educate you about... me. And us. Because despite the fact that we're not married, we're very much a package deal. I don't like to tell my story. It's sad, depressing... lots of those sorts of words apply to it. But I think it's impossible for people to understand "our" situation without "my" story. So here goes (I'll probably fill in details as I remember them later, but it's also okay to post questions -- just be kind, please):The important thing is that we now know that when I was three years old I contracted Lyme disease. It was treated for two days -- just long enough to permanently cause a false negative on antibody centric blood tests-- before the hospital stopped treatment the due to a false negative blood test (we now know that nearly all blood tests done on a child who still has the bulls-eye rash will come back negative -- the blood tests are not very useful at all diagnostically).
Over the subesquent years, I was reinfected over and over, with other tick borne diseases as well: Rocky Mountain Spotted Fever, mycoplasma fermentans, bartonella henslae, babesiosis... all from ticks -- some in New England, some down here, but all infections that were misdiagnosed and were probably 100% responsible for my less than stellar health growing up. Some of those are probably names you know, some of them surely are not. But they are all names that have come to hold a tremendous amount of meaning for me.
Despite what was festering in my spinal cord, I went to Mary Baldwin College in Staunton, VA, after my junior year of high school. I skipped my senior year partly because I could (I was advanced enough academically) and partly because I was teased relentlessly by my peers about my ill health. They accused me of having AIDS, hypochondria, depression, and everything else you can possibly imagine. Those memories are extremely painful for me. High school was a terrible time for me, not just because of how many times I had to be hospitalized for ailments of mysterious origins, but also because of those jeers, taunts, and insensitive remarks.
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I limped through my first three years of college with no idea what was wrong with me. I couldn't carry a full course load, had much lower grades than I should have, was frequently absent from class... everything about me was a disappointment. And then something amazing happened: During my junior year of college I was FINALLY diagnosed with Disseminated Neuroborreliosis (Neuro-Lyme) after my dad talked to a business associate who had a very serious case of Lyme disease and recommended that I see a local specialist. I let my dad make me an appointment, with little faith that the diagnosis would be positive or that any treatment could be successful. I was so, so wrong.
At my first appointment, the doctor spent several hours with me. She clinically diagnosed me (meaning without blood tests) on the spot, but she also did blood work that she sent to labs that reported more information than what was available with a standard Western Blot (Lyme antibody test). When those blood tests came back, they supported the clinical finding that I had Lyme disease. Further, the pattern of the bands indicated that the very same infection I'd picked up at age 3 was still present in my blood. Worse, I also had the additional diseases that I listed above. Some required the same therapy as Lyme disease, others required adjunctive therapy, and still others didn't show up on that first round of blood tests -- so we didn't know for sure whether they were present, and therefore had to weigh the risks associated with treating them vs. not treating them.
In the end, I was treated for six months with antibiotics orally. The vitamin and medication regimen was very intense -- for example, I had to wake up in the middle of the night to take certain medications, because they had to be spaced away from other medications. I also had to deal with problems caused by Lyme disease that wouldn't necessarily be treated or cured if the Lyme was treated and cured. Things like a severe vitamin C deficiency, iron anemia, hypothyroidism, damage to my pupils, dysautonomia, headaches, joint/back pain... and that was just the tip of the iceberg. But at least we knew what it was (or had a much better idea).
I enjoyed six months of nearly perfect health following that first six months of treatment (though I had to take a semester off to complete the grueling course of antibiotic/vitamin therapy, which put me behind my class -- and I was already behind the class I went in with because I'd had to take time off when I broke a bone that didn't heal quickly enough) .
During that wonderful, happy time I started dating Phil. He was the first relationship I'd ever had where I felt... normal. I felt like I was free to love him, to put my heart out, to trust, to give, to let go, if necessary. I was carefree. I credit my (seemingly) sound health with our relationship being built on a strong foundation... that and the fact that he was my very good friend long before we started dating. We knew each other through books, poetry, music, art, politics, religion, and sitting on the roof under the stars, just talking, long before we fell in love.
Our paths didn't seem destined to follow the same track. He was headed to education school at Columbia U. in NYC within five months of our first date. But once he got there, he called me every night. Though we both made piss poor attempts at dating other people, I don't think either of us really got over each other. When he decided to come back to Virginia that summer to pursue other interests (between my last two semesters of college), he made it pretty clear that I was something he was interested in. By that time, I was past "interested" and had progressed to "in love".
I was happy to have him back for another reason, too, this one less happy. My health had started to fail. I was losing weight for no apparent reason -- lots of weight. Just before I went back to school, my Lyme specialist put me back on antibiotic therapy, fearing that the disease was back, that it had never really been fully gone (a legitimate concern). But I didn't respond to the medication this time. It was all happening too fast, my doctor said. She said I needed an oncologist. She said, given my age and family history, that cancer was the likeliest cause. Phil took me to that first appointment with the oncologist -- and nearly every single one after it. I was so happy to have him there to hold my hand. So grateful.
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My last two semesters of college my GPA was a 3.78 and a 4.0, as opposed to the 2.9 I had been struggling to produce in earlier years. I graduated in December 2006 With Distinction and was nominated for a number of awards on my thesis, in addition to being nominated to the national honor fraternity for history. I was accepted to graduate school for my PhD (Fall 2007 or 2008, my choice) at American University in DC, because my research interests were in line with those of the department chair there. In the meantime, I took a job as an event planner for wounded service members at Freedom Alliance, a charity founded by Oliver North.
During my whole last semester of college I had been seeing the oncologist because my symptoms had come back, failed to respond to treatment, and had been deemed by my doctor "too aggressive to be Lyme". We were on a hunt for cancer. But I had been cleared (given a vote of no cancer) just days before I took my last final exam, received my first three job offers, packed up and moved to DC. It was a very stressful time, and looking back on it, I should have known not to push myself so hard, but I really believed I was cured of Lyme disease, and now had something else.
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I worked for 1.5 days before I had to be admitted to the hospital for three days. I was having chest pain and colitis, and the tumors we had been looking for had finally surfaced -- on my left lung, which had collapsed back when I was 15. There were three of them, and they were the kind that were most likely to be cancerous. Unfortunately, because I had prior collapses of that lung, they couldn't do a biopsy. So we have adopted a "wait and see" approach... and we're still waiting to see what the tumors do. They kept me in the hospital for a few days until the colitis cleared up and then let me go back to work. I made it six months before I got fired for not being able to do my job. (FYI: I was working for a small non-profit, so I didn't have the option of taking unpaid Family and Medical Leave Act time -- which I would have done -- because the charity didn't employ enough people that they had to comply with that regulation. I understood. They did what they thought they had to do.)
Soon after I lost my job, I moved back in with my dad in Chesapeake (though I kept my apartment in Reston because I still had a lease there). After a spinal tap and some new blood tests, my doctor concluded that whatever I was suffering from must be Lyme related, and she put me on IV antibiotics for six months. My weight dropped to 95 lbs (I'm 5'6"), my hair started falling out, and the other symptoms were ten times worse. It was awful. Worst of all, unlike most people who get IV antibiotics and see improvement quickly, I just spiraled down, down down. Between January 2007 and April 2008, I had 18 ER visits. That's not a typo.
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In October 2007 I had a falling out with my dad. He couldn't understand why I wasn't more optimistic about my condition. Given that I was on three IVs a day that were making terribly sick, that he left me alone much of the time, that I missed my boyfriend, my friends, my ability to work... well, it was a rough time and I thought it was obvious, but he thought I should be able to just be cheerful like a cancer patient on TV. Don't get me wrong, I admire those people, and I don't sit around and feel sorry for myself all the time, but I also know I might never get better, I might get worse, and I probably shouldn't reproduce. According to my therapist, if my disposition was too sunny, it would indicate insanity. But my dad just didn't understand, and I was too sick and tired to keep trying to explain. So I asked Phil to take me in -- to move in with me in Reston, to live in the apartment I still had a lease on -- and to take over my care. He said yes.
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In January of this year my local Lyme specialist threw her hands in the air and said "your case has become too complex" and told me to find a new doctor. It was a tremendous blow, but like many blows are it was a blessing in disguise. We sought the counsel of the world renowned experts Dr. L in NY and Dr. B in NJ (their full names are omitted to protect their privacy -- and mine). By the time I made it to my initial appointment with Dr. L in NY in April 2008, I was very, very sick. I believe my father carried me in his arms into the waiting room -- dark and empty, because the light was so painful to my eyes.
* Note: I will post a list of my symptoms next to further understanding for anyone who is interested.*The first test the experts did was a SPECT scan of my brain at Columbia Presbyterian in NYC. What they found was alarming: I had moderate to severe deterioration in the blood flow pattern in my brain. So the physicians put their heads together and came up with a plan to ease me back on to antibiotics, at first using very low doses, so my immune system could recover. They also started trying to treat symptoms and decode other problems -- to diagnose more rare conditions that I might have contracted from ticks or have developed as a result of the chronic infections.
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So far I have seen a steady stream of diagnoses since I started seeing the upper echelon of physicians in this area of expertise. They include epilepsy (a very detrimental form), more than five tick borne diseases, a number of viral infections, and that's just to name a few. My case is extremely complex. And people are not usually aware of it, but Lyme disease and the things that go along with it CAN cause death -- directly. I'm not asking you to feel sorry for me by saying that... it's just something we live with -- the constant possibility of my death.
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That brings me to two points: a) where do I stand right now, and b) what does this all have to do with Phil the law student?First, my current status: right now nothing else can move forward in terms of treatment until the seizures I'm having are stopped. Seizures are bad for the brain and especially dangerous in my case because they have side effects related to mood -- which is why I sometimes beg for help finding my boyfriend/caregiver late at night -- I need him for reasons related solely to my physical health. My health this year has been on a bit of a downslide: I've almost died twice since April. I finally broke down and agreed to get a wheelchair so I could go more places... but it isn't much help on days when I'm too exhausted to leave the bed. My pain level is throught the roof: I'm in nearly constant agony. The moments when I'm not are obvious -- they're the times when my smile is real. I have recently started having double vision, a narrowing visual field, and my pupular weakness has worsened, which all adds up to not being able to read much. Glasses and surgery aren't an option, so I just have to hope my vision improves someday. Otherwise my IQ (145) will have been wasted on me. All in all, this is a very difficult, delicate time. I wish I was brave and smiley like people on TV, but this disease is so different from cancer. It takes everything you have -- it's multi-systemic -- and it can do it slowly. The treatments are uncertain. The diagnoses (for many people) are unclear. Some doctors are hostile toward the idea that the disease can, like syphilis, remain in an acute phase for years. But I was talking about me, I digress. Like I said -- rough year or 18.Part B is how Phil fits in. He's my boyfriend, yes. He's also my caregiver. He's also a student at a top ten grad school. He deserves friends, supporters, non-judgmental camraderie. I believe he has found peers who are, in many instances, ready and willing to provide him with that. He's a really, really good guy. He's decent at softball, he's a good bass player, he likes music, and he's a team player. He wants to be part of the group, just like everyone else. I hope he won't be shunned because he has a sick partner with a mile long medical history. He promised to care for me this year even though it will probably compromise his grades and will definitely compromise his social life. I just hope I'm not considered such strange, dreadful baggage that people avoid him. He's amazing and loyal and really fun. He's even a decent beer pong player and not half bad at Asshole.
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Lastly, here's what I'm asking of you, reader. The whole point of me explaining all this is so that you can see that we're not aliens. We are in a unique situation for a couple under the age of 65, but we've been managing for a long time now. We have a lot of help, and we need as much help as we can get, actually, so don't hesitate to offer if you want to. We're still fun to hang out with (well, we like each other anyway), and while my condition keeps us in or brings us home early some nights, it's not always a problem.
Sometimes I think we both worry that people don't know what to make of us. It's probably a reasonable assumption. But really, we're just another couple in our mid-twenties trying to have a little fun and get our shit straight so that we don't have to live in a carboard box when we're in our mid-thirties. Treat us pretty much like you would anyone else... just when in doubt, exercise a little extra care -- I'd be lying if I said we didn't need it sometimes.
Thank you for reading.
