Monday, February 21, 2011

Update and Some Humor!

It's been an interesting first two weeks of treatment. Just like everyone said, I've been feeling sicker than before--a culmination of my worst symptoms dialed up a notch. The neuro stuff is dominant, in terms of my short-term memory, clarity of thought, anxiety, speech/articulation, and fatigue. It's like I went on a drinking binge and killed a bunch of brain cells. Still, it hasn't been as debilitating as I'd anticipated it might be... no need for in-home care. While I get weak when I shower, I can still stand; while I get dizzy cooking, I still eat. So, it could be worse.

One particular part of this experience for which I am so grateful is my new network of support. I've immersed myself into the online community of Lyme patients, particularly young, neuro-lyme people such as myself, who struggle to enjoy their youth in a world of healthy people. They've been wonderfully supportive and informative, sharing suggestions and helpful hints for everything. I've learned so much about Lyme disease, supplements, co-infections, alternative therapies, and metal accumulation, just by talking to them. My new friends, in addition to my long-time, non-Lyme friends, have been wonderfully supportive and thoughtful, and for that I'm so grateful :)

On that note, I wanted to share a few funny anecdotes from my life that are, no doubt, related to my chronic infections.

  1. Many years ago, when I still dyed my hair as regularly and addictively as druggies get their "fix", I had a surprising reaction to the hairdye. No, I didn't burn my skin or start to itch--rather, I fainted during the process. A full head of bright, fire-engine red dye was infusing my scalp when I started feeling nauseous and dizzy. I remember thinking I had no legs, because I couldn't feel them, so I leaned against the wall, and then.... my boyfriend, who was in the other room, ran into the bathroom. "Leila! Leila! Leila!" I heard through my semi-conscious state. I opened my eyes to a view of the bathroom floor, and a bright red streak on the wall and ground. Unfortunately, the dye wouldn't come off the wall--leaving a public display of what appeared to be a gruesome murder scene. And sadly, I had to discontinue that hair color after that incident--no level of vanity is worth the chemical sensitivity and toxicity (even though I looked badass as a redhead, if I may say so myself!).

  2. About six years ago, I worked as a page designer and copy editor at a medium-sized newspaper. For a couple months (for reasons I still don't know) I was having horrible chest pains. They would come on like a heart attack (and my left arm would hurt, too). The only thing that relieved the pain was having someone put a LOT of pressure on my chest bone (sternum?), more than I could do myself. So I periodically asked a coworker to put their flat palms between my breasts and put all their weight into it. One night, I discovered that laying on the floor and having this person stand over me with their hand or foot on my sternum was a great form of relief. So I laid down and had a (incidentally, male) coworker press right on the middle of my chest. Right then, my boss walked by. Now, that was a funny scene to stumble into!

  3. I also get random shooting pains in my spleen from time to time. Doctors don't know what this is. I traced the pain to my spleen by Googling images of bodily organs and anatomy, Lol. "Yup, right there under my left rib cage is where the pain is." So, a few days a month at random times, I get this pain, and if I'm around anyone at the time, I'll say, "I'm sorry, my spleen hurts." No one ever knows how to react to that ;-p

  4. For the last three years, I've randomly "seen the light!" while trying to fall asleep. Bursts of light quickly pop into my enclosed eyelids, as if someone had turned on the lamp for a half second and quickly shut it off. At first, I thought this was just my cell phone lighting up. Soon I discovered it was just a vision thing, not traceable to any real-world lights! Maybe God's calling me? Well, I recently found out a lot of people with Lyme disease have this. Who knew?
And that concludes funny anecdotal hour :)

1 comment:

  1. in relation to your metal question...i tried IV chelation...Don't every try it till the lyme is under control. If you try to force metals out in a lyme patient you will make them worse.

    Also interesting know why we abosrb metals? Its cause of displaced minerals we have lost the abilty to absorb. For example if your intestinal flora is not correct you cant absorb calcium, however to the body lead and calcium look the same, so if you cant get the calcium in due to a lack of abosrbing trace accumulate lead to replace lost calcium, if you get the process working again, your body corrects itself.