First Timer Diabetic looking for others experience

First Timer Diabetic looking for others experience

Postby RyanZwicker » Sun Apr 07, 2013 6:26 pm

Hi there,

This with any luck in getting a ticket from the STEP program will be my first trip to Burning Man. This is something I've been looking at and watching online for a long time. One of my big concerns is the fact that I'm a diabetic. I've never traveled alone and always had someone to help me out if something happened, for that matter this will only be the second time i have traveled. I'm just wondering if there is any other diabetic's that have lots of experience dealing with this living at Burning Man. I'm just curious how you prep/deal with sugar issues on the playa. Do you find your body starts reacting different to food / insulin through out the week living in a different environment then your use too. Really looking for any sort of suggestions and all will be greatly appreciated.

Thanks for your time.
Ryan.
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Re: First Timer Diabetic looking for others experience

Postby Savannah » Sun Apr 07, 2013 7:57 pm

Hi Ryan! :D

Good luck in STEP.

Here's the obligatory starter link for diabetes on the playa.
http://www.burningman.com/preparation/e ... WIv_808hJE

Here are some ePlaya threads that might help.

Keeping insulin cool?
viewtopic.php?t=12875

Foot care for dry and bleeding playa feet
viewtopic.php?t=33231

Here's a tiny thread that didn't go far but still has some tidbits of use:
viewtopic.php?t=30817

I found them by doing google searches for:

diabetes eplaya
diabetics eplaya
insulin eplaya

(It's a good trick for sure!)

Emergency Services are at 9:00 o'clock and C Street, 3:00 o'clock and C Street, and 5:15 & Esplanade. Treatment is free unless you're sick enough to be transported 2+ hours to Reno (rare) so don't be shy. Definitely have a medical bracelet or necklace, and if you know where & with whom you're camping, consider putting your theme camp name and address on it to the nearest 5 minute map increment. Tell your campmates and possibly your neighbors you're diabetic.

Welcome. :)
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Re: First Timer Diabetic looking for others experience

Postby Milayna » Sun Apr 07, 2013 8:40 pm

Welcome Ryan! :)
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Re: First Timer Diabetic looking for others experience

Postby RyanZwicker » Tue Apr 09, 2013 4:49 pm

Hi Milayna, thanks for the welcome

Hi Savannah, Thanks for all the links. I took a pass through them all. Lots of little bits of information here and there that helped me figure some stuff out. Would really like to get a discussion going with diabetic's who actually have been there. Most of the comments were stories of people who know/saw people. With any luck this year maybe i'll be the one to get things rolling with a "This is what i experienced" topic.

Thanks again for the help,
Greatly appreciated.
:)
Ryan
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Re: First Timer Diabetic looking for others experience

Postby Savannah » Tue Apr 09, 2013 8:34 pm

There really wasn't a lot of first-hand stuff that I could find, but ePlaya is a little tiny pool of Burners compared to the numbers of folks that have actually burned.

You could click "Regionals" on the main site and join mailing lists in major metropolitan areas (New York, L.A., SF and other parts of California) and see if there are diabetics willing to share their experiences. They needn't be local to you; I'm just trying to think of ways to address large numbers of people.

You can also post in one of the threads I linked (or other relevant ones) which would bump it to the top of a forum, handily, and indicate that you have already found 5 threads for example, but have a specific question regarding [whatever].

(A person might not read the "Introduce Yourself" but might be more into the Preparation forum.)

Finally--forgot to mention it before, but as you may have read elsewhere, the playa tends to reduce the appetites of most people, so that is something to take into consideration. You may find yourself wanting to eat less as well, so be ready . . .
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Re: First Timer Diabetic looking for others experience

Postby jkisha » Fri Apr 12, 2013 5:05 pm

Hey there, welcome to eplaya!
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Then I realised that the Lord doesn't work that way so I stole one and asked Him to forgive me.
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Re: First Timer Diabetic looking for others experience

Postby Bergamot » Sat Apr 13, 2013 8:47 pm

Hey RyanZwicker,

I'm another first timer diabetic, but I was wondering what kind of insulin you used and by what delivery system? I used lantus and humalog by administered by pens. (So if you have a pump, it's a whole different thing.) Though I've never been on the playa, I know for a fact that physical activity lowers my sugars like crazy. And from what most people have said, appetite and metabolism on the playa change significantly from normal levels. I've been diabetic for a long time and I've traveled and camped a bit but every diabetic is different. I can tell you what I plan to do though.

-Check sugar super frequently. I'd rather err on the side of caution, especially how being exhausted and overheated effects my perception of my sugars. I'd rather use twice the number of strips than chance not knowing where I am.

-Keep insulin in fridge. You can also get insulated travel pouches that can keep it cool for a few hours if you know you're going out and will probably need it (try a clinic or a doctor's office, I really don't know where mine came from but I'm positive nobody paid for them). I plan on keeping my humalog in my bag with me when I go out at night.

-I'm going to lower my long acting insulin when I get there until I figure out how the environment is effects my sugars. Hence the frequent checking. If I run too high, I'll adjust.

-I'm going to keep lots of snacks with me at all times: sugar tablets, sugar gel, trail mix, granola bars, and probably orange juice.

-I'm going to alert my next door neighbours that I am diabetic and tell them what my symptoms usually look like. I don't expect to need to rely on others but its good for people to have the information just in case.

-Keep wipes in bag to clean my fingertips so I can get an accurate reading each time.

Travelling while diabetic requires a lot of forethought. If you're going out for a bike ride in the sun, you'll probably need to eat something first. If your sugars run low at a certain time of day, make sure you eat something at that time and don't do too much activity. If your insulin is back at camp, don't be out for so long that you will need to eat something on the other side of the playa because from what everyone says, it's easy to get distracted and lose track of time. The last thing I want on the playa (well, second last thing) is to run a high blood sugar for half the day because it makes me thirsty enough to drink a river dry.

...I'm sorry, that ended up being really long and maybe not what you wanted, but diabetics unite! Or something. Hi.
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Re: First Timer Diabetic looking for others experience

Postby flighty » Sat Apr 13, 2013 10:40 pm

Hey guys! Type I Diabetic here, first time on the playa was 2012. I actually came here today looking for other diabetics and lo! Here y'all are! I, too, would love to hear from other diabetics who've been on the playa, Type I's or other insulin-dependents especially. I'm not affiliated with any theme camp (yet) and I'm thinking of getting at least one diabetes-related event going this year just so we can connect and share our trials and tribulations.

Here's how things went for me:

I'm on novolog and lantus pens, and the biggest challenge was keeping my stuff cool (and not frozen!) All I had was a small cooler with me, and I ended up making about daily trips to center camp for ice (first timers: ice is one of the few things for sale on the playa, it's about $5-15 per bag [sorry my memory is bad and I don't feel like going to look it up right now]) That worked pretty well, but I wished I'd camped closer to center camp and/or had my own bike with a trailer for ice transport (both things I'm rectifying this year.)

I don't know your life, but last year I was drinking pretty much every night and supplementing with some other fun substances throughout the day. I knew how my body reacted to that stuff, so I was good to go there. The thing to think about here is that you do NOT want your first serious trip on ANYTHING happening ont he playa, diabetic or not. If you don't know how you handle alcohol or drugs, don't take them. Basic tips: drink lots of water and have responsible friends WHO UNDERSTAND YOUR DIABETES around to watch out at all times.

As for my sugars, I had the expected increased insulin sensitivity due to the heat, and some less expected lows due to running and biking around all day and night. Don't underestimate the effects of walking/biking everywhere, it'll increase your insulin sensitivity. I ended up bringing a large amount of dissolvable "exercise" drink tablets (like gatorade tablets) which I'd dissolve in my water bottle and carry with me throughout the day. It's kind of hard to find them with enough sugar, but they were invaluable. I also carried glucose gel with me every day, although I never had to use it. Just don't ever get caught without some sugar - dust storms come out of nowhere and it sucks to get holed up somewhere and realized you're crashing.

Speaking of dust, it's really important to keep your supplies clean...ish. I kept my meter and strips inside two ziplocs (and had more with me.) Dust did get in eventually, but I did my best to only test when I was inside a structure with clean air, and to wash off my arm (I test on my forearm) before testing. I haven't seen any research on the subject, I just assumed that getting my meter filled with dust would be a bad idea.

Another unexpected thing was that for the first three days on the playa I did not want to eat at all. Apparently it happens to a lot of people - the heat and dryness causes appetite loss. It's hard to force yourself to eat, but I'm sure you know that you have to do it to keep your sugars up.

I can't think of anything else right now, off the top of my head. If you have any questions please just ask! And if you know any other diabetics going, get them on this thread!
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Re: First Timer Diabetic looking for others experience

Postby Bergamot » Sun Apr 14, 2013 10:16 am

Thanks flighty! I feel a little more reassured now. :)

Did the heat affect your glucose meter? I know that colder temperatures do but I have little experience with the other side of things. It really doesn't get that hot here. I'm pretty used to going to the beach in sweaters even in the middle of July.
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Re: First Timer Diabetic looking for others experience

Postby flighty » Sun Apr 14, 2013 1:12 pm

Bergamot - I'm sure the heat did affect my meter. Unfortunately I didn't have any control solution with me so I couldn't check it. Definitely will be bringing some of that this time...
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Re: First Timer Diabetic looking for others experience

Postby Savannah » Mon Apr 15, 2013 5:41 pm

Hey Ryan--I quoted Flighty's post in one of the older diabetic Q&A threads so that people could find it even after this introductory thread drops a bit down the page, and that caught the attention of GreyCoyote, who posted his own fantastic website excerpt here:

viewtopic.php?p=934894#p934894

Note: to "piss clear", as he & others mention, does not mean "piss colorlessly". Light yellow urine is fine; cloudy or dark urine (obviously) is trouble.
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Re: First Timer Diabetic looking for others experience

Postby RyanZwicker » Mon Apr 22, 2013 8:20 pm

Hey everyone,

Thanks for all the reply's. Sorry for my late reply, but a family situation kept me occupied for a little while. Lot's of info that is giving guidance for sure.

@jkisha: Thanks for the welcome. Greatly appreciated.

@Bergamot : I use Lantus and Humalog also with the pen injection system. And never worry about too much info. The more the better. :)

@flighty : Thanks so much for the info about your experience. It is greatly appreciated. I tend to look for people who have lived it more then something written by someone who thinks it, as a general rule in my life.

Thanks again Savannah, the last post link had lots of info to think about and help guide an experience for sure. It's been a long time since i sat down with anyone to discuss all the things that can and will effect sugar levels.

A couple of things I'm thinking of doing personally over some of the suggestions already mentioned is to try and get in a camp closer to a med tent if one is up for my company and contribution. Another thing I'm going to try out is storing my tester and needles with me in my hydro-pack which i'm modifying to be a little bit of a insulated cooler/backpack and just make a constant effort to keep visiting the ice tent different times of the day to help keep the pack a little cooler but not frozen. Other then telling all my neighbors and putting up a sign on my tent saying I'm a diabetic who doesn't drink or do any drugs(anymore), one suggestion a friend made to me was to write diabetic down one of my forearms with permanent marker so people passing by might see that instead of just thinking someone is passed out for other reasons.

Being a diabetic for almost 30 years now I've got my body well conditioned to dealing with variations in my blood sugar readings. One of my biggest concerns is food. It's not like you can just go another 5 to 10 minutes and pop in a convenience store if you feel a low blood sugar coming on. I'm flying in with a backpack and there is only so much room to fit so much stuff. A couple items talked about like the gel packs and the powders have definitely made me feel a little more secure.

Thanks again everyone. The more info and experience the better :)
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Re: First Timer Diabetic looking for others experience

Postby flighty » Mon Apr 22, 2013 10:33 pm

Hey everyone! I'm going to make some burnable diabetic art, and there's been some interest in getting diabetics on the playa together for discussion, activities, burning shit, etc. It's at viewtopic.php?f=321&t=64211. If enough people are interested, I'd love to organize some diabetes-themed events. Feel free to PM or friend me or reply to that discussion or start another discussion or do nothing! It's your life. You do you babe. But take your insulin.
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Re: First Timer Diabetic looking for others experience

Postby Mojojita » Tue Apr 23, 2013 11:45 am

Hey Ryan, are you related to Robert Zwicker? His family used to live in Lompoc, CA

You mentioned you are flying in with only a backpack....are you hooked up with a camp yet or what's your plan for tent/shade/water, etc...? Tell us more or we are going to start snarking about how we are all going to end up having to take care of you on the playa.

Also, I can't say enough about how great the center camp Med tent is. This needs to be said once more - unless you have to be transported to a hospital IT'S FREE, the cost of our contract with them is covered by your ticket. Just be sure that if you go see them, take your medications, meter, etc with you. They will run an IV if needed and they are in constant radio contact with a large Reno hospital in case they need to consult a specialist (although I was blown away by the level of expertise of the doctors and nurses there). Keep in mind that if you feel yourself getting into trouble, Black Rock Rangers are like walking radios and can get you help quickly.

Other than just telling your neighbors, you should do a little scouting around and see who in your neighborhood has a radio - there are likely rangers, volunteers and staff living in every neighborhood.
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Re: First Timer Diabetic looking for others experience

Postby RyanZwicker » Mon Apr 29, 2013 6:57 pm

Hi Mojojita

I would have to say i have no idea if I'm related to Robert or not. I know within my Great grandparents generation a few brothers and sisters did go into the mid to west coat of the US from the Zwickers that landed in Nova Scotia. So who really knows, there is always a possibility.

I'm not hooked up with any camp yet. Since my first post things have changed a little. My wife now has the ability to come along with. So it's now sifting through the tons of cryptic camp descriptions to figure out what each is about and what we feel we will fit in with.

I've heard a few stories on how amazing the Med staff is there. I have no doubt if something goes wrong i would be in good hands.....provided they can reach me. lol
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Re: First Timer Diabetic looking for others experience

Postby SprinkmanPat » Sun May 05, 2013 4:08 pm

2013 will be my third burn...I am 57 years young and been Type 2 with insulin for years now. I roll with "Poly Paradise" which is a great camp and for a small fee for the week ($150.00) they provide 3 meals a day a kitchen and storage for your cooler. I am insulin dependent...I have to take 1 sometime 2 shots before bed time...again no big deal...I always have a camelback with me and glucose tabs, power bars...have never had a bad "crash" while on the Playa. Remember one of the main themes here is "Radical Self Reliance"...so you have to be able to take care of yourself...again...NO BIG DEAL...if you want to roll solo jus bring losta water, and meals to keep your blood sugar where it needs to be...and be ready for the time of your life....Burning Man is the BOMB !!!! Enjoy fellow Burners

**Footnote...I keep my testing stuff in a zip lock bag and insulin in a cooler. You can buy fresh ice everyday if you choose to...cubed or block ice in center camp...IMHO...Be prepared but do not over think this thing and know that ya know...you are not alone in Black Rock City...see you in the dust
Life is all about the ride...enjoy it !!!
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