All That's Happened

It is so amazing how quickly time passes when there are things that need to be done. I have not updated in so long I probably won't remember everything that should be reported, if I wanted to stay true to my original theme of What Happens After Diagnosis...or whatever it was. But a lot has taken place, so I will try to lay it out as chronologically (wha?) as possible. There have been rises and falls, but hopefully I can sort it all out in my memory as to which is which.

"Lyme is like a box of chocolates..."

First there was the rash. One day after a particularly bad bout with a Flu Pattern, my scalp started to hurt, feeling like I'd plunked a "pain helmet" on top of my head. The pain progressed throughout one day, and the next morning I noticed when I pulled back my hair a red rash scattered all over the top of my head. Horrified, I went to the doctor, but no one could tell me what it was (of course). My Lyme doctor thought it looked like bartonella (aka cat scratch disease, a lovely co-infection of Lyme), but couldn't be sure. Everyone else said it looked like lice, by which of course I was more horrified and disgusted, but there were no bugs to be seen, no other telltale signs. I was given an antibiotic to clear it up, and got through a few doses before starting to feel sick (probably from a "herx") and stopping. Gradually it did clear up on its own, though I have had a few recurrences in smaller patches since. I also noticed more symptoms as the rash ran its course...like a frightening crawling sensation all over my head. Out of curiosity I read a little on Morgellon's disease, which is thought to be closely related to Lyme, and found it can start on your scalp, and one main symptom happens to be a crawling sensation on the affected area. You know...it's always something. You can't say life is predictable when you have Lyme.

Closing Up Shop

Not long after that ordeal, I called to reschedule another appointment I had with my Lyme doctor and was shocked when the receptionist told me she didn't know when to reschedule me because they weren't sure which day they'd be open again in the future. When I asked why, she put me on hold, only to return and hurriedly promise the doctor would give me a call later. That was over a month ago, and their phone now only rings endlessly when I dial it and there is almost no trace that they've ever been in that office. The whole situation is just unbelievable to me. After being diagnosed with Lyme I read horror stories about how hard it is to find a doctor, about how they are chased out of towns, lose their licenses or go bankrupt, leaving their patients high and dry, but I have to admit I was skeptical until it happened to me. The worst thing was that I had had my son tested for Lyme a couple of weeks before, and now I had no way to retrieve those results. I called the lab that held them and found out my doctor had closed his account with them, and they weren't allowed to release the tests to just me for some reason. This was when I stopped the denial and realized, Yes, this has really happened. It was absolute devastation to say the least. I took a deep breath, had the tests rerouted to my primary care physician (and a painful decision that was, because he had refused to test my children in the first place and I was very uncomfortable with what might happen to those results once they reached him), then waited. I am pleased to report my son tested negative, and we probably have a stay in the NICU to thank for that; he received heavy antibiotics for a length of time after his newborn tests revealed an "unidentified organism" swimming around in his blood. Heh...wonder what that could have been??

The New Me

In the middle of all this I had the results from my sleep study to contend with. I had stayed in this clinic for the night because my cardiologist thought I could have sleep apnea, but with the amount of tubes they put up my nose and hooked to sticky bandages all over my body, I'm not sure how they expected to produce a true "just like at home" sleep pattern to gain insight with. (An aside: At this moment I am being vague about the study because I can't remember if I've already written about it; if I haven't I'll post about it in greater detail some other time. Damn you, Lyme.) At any rate, the results were that I had "hypersomnia", or I slept too much, somehow, and the test also revealed I could have a little sprinkle of narcolepsy as well. "Oh yeah," he said, "And you have high blood pressure." Walking out of that meeting I was depressed, disgusted, at my wits end, and, I knew, I couldn't take this anymore. With high triglycerides, high AND low blood sugar, and now elevated blood pressure, (couldn't even THINK about the narcolepsy thing) I was just one stop short on the train to Heart Attack City. Of course, I wallowed in self-pity for a bit. But when all the ice cream was gone I decided I had to take action, and I had to do it right then. I am 28 years old and I am not going to die a fat cow. Fuck this. I got back on my diabetic diet (hardest fucking diet in the world to follow, because mine only allows 1500 calories a day) and started doing ANY exercise I could muster the energy for, even if was just drinking more water so I had to walk to the bathroom a few extra times. Eventually I started to feel a little better, and when my husband bought a badminton set it only took a couple of times of kicking his ass to make it almost a daily ritual. I have to say something has definitely shifted in my recovery; over the last couple of weeks my symptoms have been significantly more quiet and a Flu Pattern I felt emerging faded away without even really trying to mess with me. I lost five pounds (which I quickly regained in puffiness, because I have a lot of swelling and refuse to take a water pill which causes low blood pressure swings, something I already have to contend with), but when I deflate maybe I'll be lighter still. I have told myself that even if the weight doesn't come off, just the lessening of symptoms is enough of a reason to stay on this regimen, but there's no telling how long it will take for Lyme to outsmart it or if I will mentally crash at some point and say "Screw it." But saying that is like saying I'm going to roll over and die of this disease. And that's just fucking crazy. In fact, I can't even talk about it anymore.

Today

Today is so far an ordinary day (except for the fact that I actually posted on this blog). I forgot to mention that I had gone back to work some time ago, left because my symptoms became unbearable, and then got a job working at home, which I also left because I couldn't keep up. In the middle of that I realized I wanted to be a writer again, which has never exactly escaped me but my last YA novel being the car wreck that it was had discouraged me to the point of inaction. It suddenly occurred to me I was spending ten hours a day working for someone else and was willing to sacrifice my brain, so if I could just spend that kind of time working for myself I might have something. I dug through some old files and found one of the ten children's books I've written in my spare time and had an epiphany (Why couldn't I try to sell THESE?? But...but I'm a YA fiction author, not a children's book author! Scoff. Yeah, I know, I'm an idiot). I have sent out a query letter for one already and if I am going to hear anything, it will be in the next six weeks. Money is definitely a problem for us right now, and there's no easy answer to that one. But for now, for today, everything is okay. And that's how you have to take things when you have this disease...one day, sometimes one moment, at a time. And write as much down as you can, so you don't forget what happens along the way.