Tag Archives: lyme disease

I'm diseased

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A few minutes ago, the receptionistMelissa (another PA?) at my PA’s office just called me with my latest blood test results. She didn’t ask me to schedule an appointment. She actually gave me the results over the phone.

She said my Lyme test results were still pending, but that the other tick-borne disease (ehrlichiosis) came back negative. She also said that my B12 levels are stable, so I should take a daily B12 vitamin to keep them that way.

Then she said that the double stranded DNA test came back positive — which can indicate an autoimmune disease. I may have sounded perversely excited when I gasped, “Really?”

She then said that Pam (my PA) wants me to see a rheumatologist for further testing. I picked a specialist from the list of names she gave me, and she said that she would fax over the referral. Someone from Dr. Greco’s — not to be confused with the neurologist I saw, although I think they are related — will be calling me to schedule an appointment.

As crazy as it sounds, I’m actually excited that something came back positive. I’d like to think that it’s only a matter of time before they figure out what’s been kicking my ass for the last two years. I like that I can say, “I have some sort of autoimmune disorder and they’re figuring out what,” when people ask what’s wrong, rather than, “I don’t know.”

It’s kind of nice to have hope again.

Update 08/20/2009 Just got off the phone with one of the receptionists. My Lyme Disease results came back and are NEGATIVE. So, forward mighty steed with the autoimmune disease testing!

My chronic pain is driving me insane

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Obviously my chronic illness bothers me. There’s no denying that I’m constantly angry, frustrated, or depressed because I am almost always in pain. But last night I realize what bothers me the most about this whole thing.

I always feel so weird complaining, like maybe I don’t have the right to complain because I don’t have a diagnosis. I read other chronic pain blogs and they all know what’s wrong with them. I can empathize with the pain, but I feel left out because I don’t have a word for what’s wrong with me. I feel like I don’t have a place or a group to belong to, as strange as that sounds. Ironically, I’ve always felt like I never quite fit in anywhere, so naturally it has to be the same way with my illness.

There are whole communities devoted to people with Lyme Disease, corners of the web for people with Thoracic Outlet Syndrome, and even a place for moms with chronic pain illnesses. Undiagnosed.org is empty. It’s just a placeholder for something. Am I truly alone out there?

I still have to get yet another round of blood work for Lyme Disease done. I might do it tomorrow morning, as long as I can find someone to take me (I hate going alone), and as long as it doesn’t interfere with going to the beach (yes, I’m that bad at finding excuses).

Maybe it’s the gloomy weather, but today it’s a lot harder to deal. Maybe it’s because my legs hurt, reminding me that I’m not as healthy as I was a couple of years ago. Maybe you can’t tell from the outside, but I feel like shit. All I want to do is fall asleep and ignore everything else for the rest of the day — including Mike, who I’m supposed to hang out with later.

Maybe, instead of working on web projects, I’ll channel all this blah into something productive and WRITE. I miss writing. That would be nice.

Blood work and bees

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This morning I had an appointment for my third B12 shot.

When I got out to my car, unlocked the door and opened it, I was greeted by two friendly bees. They were sitting on my window, just daring me to do something about it. The first thing I thought, of course, was that there might be a nest somewhere in my car. I stood watching them, willing them with my ESP to leave. They, of course, didn’t.

So I did what any self-respecting tough girl would do: called my dad and made him take care of it. One of the bees flew away, and then my dad came out and killed the other one. I figure, why get my hands dirty when my evil henchman is perfectly capable?

He then inspected the car and, finding no nest, sent me on my way. “Just, you know, if you see any more while you’re driving, don’t crash or anything. Just pull over and get out.”

Me, the sissy who squeals and hides when anything buggy and winged comes within a three foot radius of my face? Pull over? Right.

So I went to the doctor’s office, fifteen minutes late, for my third B12 shot. Pam asked if I was feeling any different and since I don’t she said I didn’t have to get another one. I figured for the hell of it I would, but she doesn’t think it’ll make a difference at this point. I told her about last Monday and how my legs hurt so bad I could barely walk, and she said she still really thinks it’s Lyme Disease. She asked if I would mind getting more blood work done. Since I have already been needled a bazillion times, I figure I am a pro at it and one more won’t kill me. I have to wait two weeks since she’s also going to check my B12 levels again and we did three B12 injections over the last three weeks. (She said that the injections would make my levels skyrocket and they wouldn’t get an accurate reading.) I’m supposed to go pick up that B12 oral vitamin prescription, but my bank account isn’t going to have any of that. I guess we’ll see what I’ve got left over after I do my tires this morning. (I’m getting new ones, an alignment, and struts and whatever else goes down there.)

Walking out of the doctor’s office I wanted to cry, and only because these appointments always leave me feeling drained and hopeless. As much as I like Pam and as hard as she is trying, it still doesn’t change the fact that I am getting nowhere. Though I do feel a little more hopeful, I’m kind of wary. Still, the fact that she added an official looking diagnosis to my blood work requisition form kind of gives me a lift: fatigue, myalgia, vitamin deficiency.

Well, I’m off to go see the new tire wizard. They’re buy three, get one free, so keep your fingers crossed that each tire isn’t like a bazillion dollars or something.

PS: I know I absolutely rock at blogging lately, because I can tell by all of the comments I’ve been getting. If I haven’t killed you with all of my boring-ness lately, maybe you could leave a comment and let me know you’re still alive. ;)

Cursed

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I’ve decided that it no longer matters which disease I’m fighting. For so long, I’ve become wrapped up in finding out WHAT it is, rather than focusing on how to fix it. I’ve been focusing on trying to find a pattern, and the only pattern I can seem to find is that it just keeps getting worse. Whatever it is, it’s kicking my ass.

The thoughts in my mind are too loose, and trying to get it all down on paper is like herding kittens. I can’t think straight. All I want to do is cry, but I know that if I start I’ll never be able to stop.

A few months ago I would half-jokingly say, “what’s next, I won’t be able to walk?” I tried to picture the day that might happen. I couldn’t. I refused to. I was convinced that whatever this was, I’d have it all figured out and better before it got to that point. Now? Not so much.

Over the last couple of weeks — and more so the last couple of days — I’ve had a really rude awakening. The person I once was is gone. She’s dead and buried. As much as I’ve tried to come to terms with that, I couldn’t. Now it looks like I’m going to have to.

It started a couple of weeks ago, when I was house sitting. Actually it was the night after the Fourth of July, the night after the party Mike and I went to. (The one I went to wearing wedges, walking gracefully for the first time in my life. See what alcohol does?) That Sunday my right ankle ached a little. I wrote it off as a twisted ankle, considering the previous night’s shoes. I perhaps stupidly ignored the fact that the pain was awfully similar to the pain I get in my arms and sometimes my thighs and toes.

It went away — for a couple of days. Then it came back, and sometimes occurred in my left ankle, too. It came and went, and after a couple days I had to admit to myself that whatever was wrong with me was also now wrong with my ankles. I saw my PA on Friday and told her about it. She checked for pain and swelling, to make sure I really hadn’t twisted it. Nothing hurt when she poked at it or bent it, but she did notice a slight swelling in the tendon next to my ankle — which she said could occur with Lyme Disease.

I’ve been tested for Lyme Disease before, and the blood test results came back negative each time. Pam said that Lyme isn’t always detected in blood tests, and that it’s a great imitator of other autoimmune diseases — which would explain my crazy grocery list of symptoms. She said she might just put me on the treatment anyway, but that she had to check with Dr. Mongelluzzo (the practice’s head doctor) first. I also got my second B12 injection, and we also discussed the possibility of sero-negative arthritis.

At home, I did some research. No other doctor had ever told me that Lyme doesn’t necessarily show up in tests. They had all just written it off and gone on to the next thing. I was pissed. “If it’s been Lyme Disease the whole goddamn time, and I could have had treatment and relief two fucking years ago,” I said to Mike, “I’m going to flip shit.”

Saturday I was supposed to go play miniature golf with Mike, Robbie, and Jaysa. I was excited, but by the time it was time to go my right ankle hurt so bad that I couldn’t walk on it much. I canceled at the last minute, and convinced Mike to go without me. Granted, I got to go see Harry Potter instead, but I still felt bad. Here I was, giving up more because of the Disease With No Name.

Sunday it was a lot better. I felt a little twinge now and then, but in comparison to the day before I felt okay. I spent the afternoon at the beach with my mom and sister and made plans to go to Lake Compounce on Monday with Lauren and Mike.

By the time we got to Lake Compounce, my ankles ached a little but not enough to stop me. We went on a couple water rides and I let them talk me into riding Thunder and Lightening (which was actually cool, even though looking straight down at the ground the first couple of times was a little scary). But by about 8:00, both of my legs were aching, sometimes sharply, with the pain radiating up and down and all over. I could barely walk. In line for rides, I leaned on fences. While walking, I leaned on Mike. I went from amusement park Indiana Jones to feeble old man in less than a couple of hours. As much as I wanted to ride my favorite, Boulder Dash, I could barely stand the thought of standing in line for twenty minutes for it.

So I made us leave. Even though it was the last thing I wanted to do.

The walk from the park exit to my car was beyond excruciating. I’ve always been good with words but the closest I can come to describing it is saying that I wouldn’t wish it on anyone. I literally look teeny, tiny baby steps, shuffling at Mike’s side while Lauren tried to slow down and stay with us. People kept going around me. I think the old people were even moving faster than me. I kept joking about maybe stealing someone’s stroller, or where was that security van when we needed it, but I honestly don’t know how I did it. I remember thinking at one point, “wow, this really fucking hurts.”

My only consolation was that it’s probably going to get a lot worse.

Meanwhile, I’m not noticing any difference from the B12 shots. Pam says if it’s going to work, I’ll feel a difference by the third shot. If anything, she said it would make me feel less lethargic. I think, if anything, I’m feeling more fatigued — even on the days when I get a lot of sleep.

Today I’m having a hard time smiling. Because now, to me, “what’s next” is not a joke. It’s a nightmare and my reality. Am I going to be in a wheelchair? Will I lose yet more of my independence — my self? I used to be able to carry things, play with my friends’ kids and little cousins, go hiking. I’m losing more and more of who I used to be.

On a totally different note, I will be blogging during Blogathon 2009 (July 25th) with Donnie of Voice the Silence to raise money for RAINN. Please read my blog post about this over at Scars Can Speak, and thank you for your support.