Lyme Disease & Coping on the Playa

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StinkBug61
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Lyme Disease & Coping on the Playa

Post by StinkBug61 » Tue Aug 03, 2004 7:35 am

Howdy my Fuzzy Friends,
I searched the archives but found no posts relating to those who have Lyme Disease (as I do) and coping on the playa. I was undiagnosed at the time of my first burn last year - just thought I was hung over all the time ;-)

Anyways, am quite sick now so am taking this year to continue to heal but will be there come hell and high Gatorade next year!

I'd like to hear from any other Lymies about how you cope. There'll be no hangovers again for me since I'm going to go sober next year - partly with choice and partly because the antibiotic therapy and hootch don't mix.

Anyone with severe chronic fatigue, fibromyalgia, MS etc can also address this topic if you have some experience to share. (Many are actually Lyme but docs fail to consider/recognise it "we don't have Lyme in <fill in your area here>'- that's another thread for another board, of course).

Bonus: it is highly unlikely to be bit by a tick in Black Rock - unless it's hanging out in your camping gear from another excursion. Hey! mosquitos bit me last year! No shit! I think they came in with the street spray water.

Be well everyone and know that many on the outside are rocking with ya'll in spirit.
Hugs,
StinkBug

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theCryptofishist
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Post by theCryptofishist » Wed Aug 04, 2004 8:47 am

Sorry, I have no experience or advise for you. It sounds as if you at least know your disease and have met the playa--which is what I advocate for anyone with a disabilty who attends the event. Does a trustworthy campmate know what's going on (including symptoms) in case of a medical emergency? Think it through carefully and have a great burn.

StinkBug61
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Post by StinkBug61 » Wed Aug 04, 2004 9:13 am

theCryptofishist wrote:Sorry, I have no experience or advise for you. It sounds as if you at least know your disease and have met the playa--which is what I advocate for anyone with a disabilty who attends the event.
Hi theCryptofishist,
Very sage advice: a) know your disaease/ailment/disability/limits and b) know the playa

Last year, I didn't know my what my disease was nor its limits but the playa taught me a lot. My personality is such that I respect my limits, test them constantly and will ask for help if need be but stubbornly hang on to my personal sense of responsibility until which time I think I may become a liability to others *grin*. (Hey, I think I'll quote myself on that pearl one day).

I'm unlikely to have medical emergency with Lyme, so that's cool. And speaking of which, learned on my first trial by Playa fire to be even more creative next time to stay cool - am installing a/c in my camper van and investing in one of the quiet models of generators - for BM05 as well as a 4 week road trip preceeding it. I ain't gonna let this hold me back from living! But, as balance is a handy thing, this year I stay home and get well.

One more thing I'd add when you advise first-timers with physical (and mental) limitations is to arrange a "leave the playa" pact with self and campmates and have that point where the decision is made really clear and all transportation planned so that no one is caught by surprise, no one reaches medivac level (hopefully) and one takes responsibility and self-succiciency to split and not bum campmates out who are having the time of their lives. That special "playa buddy" who will stick with ya (and vice verse) no matter what comes up - even if it means leaving 10 min before the burn! (Vaults of Heaven forbid :-)

Be well my friend, I sure hope the live video feed works this year,
StinkBug (Kat - belly dancer at Bollywood '03)

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theCryptofishist
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Post by theCryptofishist » Wed Aug 04, 2004 9:24 am

StinkBug61 wrote:One more thing I'd add when you advise first-timers with physical (and mental) limitations is to arrange a "leave the playa" pact with self and campmates and have that point where the decision is made really clear and all transportation planned so that no one is caught by surprise, no one reaches medivac level (hopefully) and one takes responsibility and self-succiciency to split and not bum campmates out who are having the time of their lives.
You got it. As a member of the Emergency Services Department, I'd like to see people taking care of themselves before we have to take care of them. As person with my own disability and a certain amount of experience in the community, I don't want to say that a disability is a suffient reason to not attend the event. You just need to put in more care and do more prep.

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unjonharley
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Post by unjonharley » Wed Aug 04, 2004 9:58 am

I have spent the last two months working on work/rest limits (MS). Or I don't get to have much fun time. I go to bed early. Mornings are my best times to meet the other early birds. Then a nap, more play, and a hot time long rest. With some evening out time.
I'm the contraptioneer your mother warned you about.

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shitmouse
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Post by shitmouse » Wed Aug 04, 2004 9:09 pm

cheers to you guys.
be tough, be strong.
-b
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