Posted by: jujuridl | September 11, 2010

Lymejello

Checking in, folks.

Well, I”ve been on quite an adventure since I last checked in. It seems Lyme Disease, if you don’t treat it immediately and soundly, is not so easy to fix.

This version of the disease is called Neuroborreliosis.  Which is an infectious disease that comes from an untended Lyme infection. That is, I did not seek proper care when I was infected, or perhaps re-infected, and the bacteriae introduced by some long forgotten tick bite(s) had been calling my body home for many years before they were discovered, in February 2010.

For long-time SDP readers, I was was likely infected during those long, glorious runs and hikes in the Maine woods back early in the decade, when I would seek out (!) matted down deer beds to pee on really long runs. Sheesh. There was a rash I ignored, and well… The blood clot, the horrible headaches, the menses-from-hell, all part of the Lyme picture. As was the scary cognitive deficits that had me turning off the car as I drove down the road, and sitting at stoplights, not understanding their meaning, and unable to remember how to make the shower water hot or cold… crazy stuff.

Unfortunately, treatment for this disease is tricky, and individualized, and sometimes our best medicine can do little more than try to achieve a kind of uneasy truce with the bacteria. My response has been at times terrific, but lately thwarted by complications.

As a lifelong storyteller and communicator, the central frustration for me (putting aside the physical disabilities for now) is that the infection sometimes affects my ability to read, write, speak, or understand the spoken word. Also my hearing is affected, and my sensitivity to light limits spending time online, considerably. The good news is that the symptoms are not consistent. I have days when I feel great. Days when reading and writing is not very difficult at all.

But on those days when I can’t think straight, I’ve found it helps me to draw. I don’t know why. I’m a lifelong knitter, and I thought knitting would tide me over those times, but knitting hurts when the symptoms are flaring. Drawing doesn’t hurt.

Also, graphic novels are somehow, if not easier to follow, then just more pleasant for me, when my mind is mush. It doesn’t frustrate me to stare at a page of images the way it does to reread the same sentence 50 times, trying to decode it.

I am new to drawing. There is much I don’t know about it. But I won’t let that stop me. I have begun posting my drawings in another space, a drawing project that lets me work out my frustrations about Lyme, and also help to provide some information about this aspect of the disease that so few people understand.

I hope it will help others who are dealing with this nasty illness. My humor tends to be dark and snarky, though. And like a lot of people who have lived online a long time, I have a propensity to over-share. For those offended by that sort of thing, let this be my official apology  and invitation to ignore it.

Oh, I should say this… I spend on average a third to half of my days in bed, in a quiet, dark room, wearing a mask, trying to sleep through horrible headaches and manage violent nausea. Good days are half about catching up with my life, loving my family and friends, and then there’s a little time to actually produce. I guess what I’m saying is, production is a crap-shoot.

I’m sure I’ll get back to writing about health again when it is possible for me to do that. That is a day I look forward to.

Meantime, I hope you are taking good care of yourselves. And please, please, please, if you are bitten by a tick, go to your nearest prime care or emergency room immediately. Do not wait out the weekend to do it. The sooner you treat this disease, the easier it is to beat it. Not beating it is not something you want to experience.

All my best, always,

JuJu

http://julieridl.wordpress.com


Responses

  1. Oh Julie – I had noticed you being quiet online and had hoped it was for good reasons. So sorry to hear of this!

  2. So sorry to here of this. But it’s very important to know that vaccination exists since about 20 years (if I remember well…) if you love walking in the woods. BEFORE the tick bits.

    Take care. Wish you a lot of courage.
    Kind regards from France, Christa

    • Thanks for writing. We used to have a vaccine here in the States, but it was removed from the market. Maybe some day. Meanwhile, we can vaccinate our pets.

  3. JuJu, thank you for posting. I’m so sorry to hear about your struggles with Lyme Disease. I had no idea it could be so invasive and harmful.

    I went to your graphic link. You are so talented. You should consider writing short graphic novel type information pamphlets or posters about Lyme Disease. I’m a librarian and I KNOW that kids and adults enjoy and often prefer the graphic format for learning information. Maybe, as things get better for you, and I pray the do, soon, you could undertake something like this.

    If you’re feeling up to reading a bit, Diana Gabaldon’s great time travel yarn, Outlander has just come out as a graphic novel. http://www.amazon.com/Exile-Outlander-Graphic-Novel/dp/0345505387/ref=sr_1_1?ie=UTF8&s=books&qid=1284322347&sr=8-1

    Hugs and best wishes

  4. Dear Julie, was so sorry to hear about your continuing struggle with Lyme’s disease. Your strength and sense of humor just amaze me and, surely, must be what helps you pull through each day even if your humor is “dark and snarky”. It is after all, an outlet, isn’t it? :) Thoughts and prayers to you as you continue this battle. With your positive outlook I cannot see how you will not overcome in the end. I look forward to following your art as I do your other writings and sites.

    Though the posts at SDP are few and far between these days, please know that it is still my “go to” place for all things weight loss and for encouragement. It’s truly an amazing place. In late Oct. I will be undergoing WLS (VGS) and SDP was the first place I came to for relevant information.

    Thank you for your brilliant writing! I look forward to new posts regardless of how far apart they are. Just concentrate on your health, getting better and educating people on this life altering disorder you’re so gracefully dealing with.

  5. Juju..I am so sorry that you have to go through this. My prayers are with you. BTW…I enjoy dark and snarky (snarky is one my favorite words lol). Take care.

  6. That sounds absolutely awful, but I’m very impressed you’ve managed to find other ways to occupy yourself. I would just be bored and bitter. Best of luck to you fighting off this illness.

  7. I am very sorry that you have to go through this.

  8. The good news is eating right and exercise is one of the best ways to stay healthy and prolong life regardless of what you are currently fighting. It sounds like you are keeping a very positive attitude and will work hard and continue to be insprirational and successful!

  9. eat healthy and live healthy…My prayers are with you…Best of luck to you fighting off this illness.

  10. Sorry to hear about this disease. Wish you the best.

    Benjamin Raucher


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