Trip: What Should I Bring Etc

I would get a frio which is a lot easier to use for your insulin than a cooler and ice. I believe you can link to it from this site and get a discount. It just needs to be soaked in water. I wouldn't necessarily run your blood sugar high to drive but would test more frequently.

thanks Zoe,

I'm going to check out the frio- I wonder if I can get it in time for this trip though- I keep seeing everyone mention them so they must be good. I don't want to run bg high- I hate doing that really, but I am worried about such a long drive, but I think you're right, just testing more and stopping is better.

I always carry spare insulin, but I don't refrigerate it. I have never had a bottle go bad due to heat, but I am quite careful to keep my diabetes bag out of the sun. When driving, it is always a good idea to have glucose very handy. And rest areas are my friends on a road trip--I will stop, hydrate, stretch, use the facilities, and test. Depending on the trip length and where I will be, I bring a backup meter, batteries, and all the backup/spares I need for my pump and CGM (I realize you use pens).

Great that you will be participating in Dr. Faustman's research! Awesome!

Thanks Melitta, good idea to bring a spare bg meter and batteries- I didnt' think of that- that is very important. I keep a bottle of g tabs next to me in the console whenever driving and one on my lap too! I think I will use a cooler this time just in case as I keep my unused insulin pens in the fridge until I use them.

I'm so excited to be able to participate in it. My friend is going to be my control. I hope to participate in phase II maybe, although I know there are probably tons of people who want to do that. I was watching some of her interviews last night and thinking, thank god for Dr. F and everyone who is helping her.

I always bring extra insulin. Never leave it in a hot car and pack it in a frio pouch or something that is at least insulated (like an insulated lunch box). The Frio pouches are awesome for lots of hot weather stuff, but you probably wouldn't need one for this.

Insulin should be ok in the hotel room without refrigeration, assuming the hotel room is at room temp. If possible, I always try to avoid leaving my insulin out of my sight (i.e., in a staff refrigerator). You may not have access to it if you need it and someone could easily tamper with it.

Over time, you will feel more comfortable with travel. In the end, it is good to feel like you can handle disaster and be ok. Last summer, I went on two weeks of travel overseas and had all my insulin frozen. It turned out ok. I don't trust hotel fridges, they can freeze too easily. I just use a frio as discussed by others.

It is always good to test before driving and test every hour or two if you don't have confidence in your blood sugar control.

If there is a sudden alien attack on the drive up and take all your diabetes supples, you can still go right to Walmart and replace everything. There is a Walmart in Quincy and one in Lynn.

I am driving to Boston over Labor day and back. I like to stop at Cracker Barrel for a meal on the way.

If you are staying at a hotel without a fridge, I WOULD keep your insulin in YOUR cooler. However, it will be ok at room temorature unless the weather is just so very very hot. Have a great trip. Boston is a fun city.. It was not too terribly hot when I went there in August last year, for the same reason you are going.The staff at the Faustman lab is very nice. You may even get a chance to meet and talk with Dr.Faustman. I did at my first visit. She is enthusastic, engaging, and encouraging. Great, accomplished lady,not at all ego-driven.

Whenever I am driving long distances, I always use my 2nd basal rate pattern, which is a tad bit higher, since I am just sitting in a car and the stress level, as well, is higher.. Make sure you have glucose tabs, jelly beans, skittles,juice boxes, whatever you use for lows, within a hands reach while driving. I do long-distance driving frequently, sometimes alone; and these are two of the strategies I use. The other posters have great ideas, as well.

Enjoy the Boston trip and visit everything you can. yes, even the tourist traps. I never drive in Boston, I have always flown there. Public transportation is easy;and a lot of the attractions are free or low cost. It is a walking city with so much to do. You will be at the LAB FOR AN HOUR OR LESS.. .Have a great trip.
and Nataliant, again,Always bring extra insulin. always. and extra supplies. rather be safe than sorry. But you will NOt be sorry. The Boston Experience has always been a great one for me. Do check out my profile and pictures to see my Boston photo albums.
You will have so much fun!!
God bless,

You're right mbp, I didn't think of that but it's not safe to leave it anywhere other than under your own care or that of someone you trust. I will keep it in a cooler in my room or the fridge if I get one and it seems like it isn't one of those ones that freeze things. thanks!

ps.I ordered a frio, but I don't think it will be here in time, we are leaving monday now- we decided to take the ferry and this will cut down the driving time.

thanks Brian,

I hope a sudden alien attack will not occur! does walmart do that? I assume if you have an rx there... I have filled most of my D things there, but I plan to switch things to my mail order which is cheaper. I will bookmark those walmarts when we get there. maybe we will get to the cracker barrel too, we're going to stay another night and do something after the tests.

was your insulin ok after being frozen?

Is it really possible to ever be "in good control" of your bg?? lol... even though I'm in a lower range now I still seem to have wide swings. I will definitely test before driving and test each time we stop which will be a lot most likely.

I am concerned since I had a bad hypo last night in early am of 39 which took about 20-25 g of carbs and some protein to get back to normal. I'm not sure what is going on- I have been changing my basal dose to some in the afternoon when bg tends to rise and the rest with dinner or a bit later.

I have been way too nocturnal lately and I think this is affecting everything but I also think I need less insulin maybe overall.. my inr nurse said she thinks I'm a brittle diabetic because I have so much fluctuation, but I wonder if it is just my odd hours, a little too much insulin at times and insulin/glucose sensitivity.

Hi Brunetta,

thanks for adding me as friend :) I tried to post something on your wall but I couldn't... I will try again later...

I am going to keep it in the cooler most likely because I won't forget it that way... and I have a mini one just for the insulin... I will be bringing food too as I don't want to eat out that much. I'm going to bring doubles of everything so that way I should be ok..

I think the weather is going to be nice.. that would be great to meet her.. she seems really nice in her videos and Sophie who I spoke with on the phone is nice too..

I just had a bad hypo so I think I will keep the basal as it is and just run a little higher if that happens and maybe even lower it a bit. I seem to be swinging all over again lately and I feel dizzy a lot whatever my bg is. I keep my glucose right next to the console and some tabs in a little open drawer too... I will keep some soda/gatorade etc. too nearby. I have to educate my friend on what to do if I go really low.

Thanks... I'm getting psyched for it now.. but I will have to get up sooo early for me, lol. I'm going to check out your pics!

so far travel for me has been just going out the front door and local things and even that I am scared to do sometimes, but I think this will be a step to show myself I can do this and be ok.

Meee, sorry I called you by the wrong name in the above post. Too many names to remember on Tu D.. or maybe I am just middle-aged addled (lol).....anyway you know I caught that error when I befriended you. I am wishing you the best on your trip. I eat a lot of fat/protein items when I travel: cheese sticks, nuts, cottage cheese in the cooler ... A good stash in a walking city like Boston is tiny raisin boxes, and/or glucose tabs for lows, and nuts (I like almonds and pecans) to keep blood sugars stable.

God bless,

it's ok Brunetta, I figured you got me mixed up... I have trouble remembering things too and it's getting worse...

good idea to eat proteins/fat... I'm bringing a cooler full of stuff to munch on.. I have never tried raisins.. I will try them... I have been eating sunflower and pumpkin seeds, love them and they seem to keep me more stable without going to high cause they're low carb...

I was wondering if we are supposed to fast before the blood tests? Sophie didn't mention that and I hope not

No fasting necessary as far as I remember. The Faustman Lab is NOT testing your blood sugars nor A1c's. From what i understand,they are just checking to see how much of the BCG ( the generic drug) is needed to up the tumore necrosis factor ( TNF), which will kill off the rogue t-cells in our type one blood; then our beta cells will grow again.For this step,Fresh blood is needed.She doeds not have the money to proceed to Phase II wth testing on human subjects.. I think I have explained it in a nutshell.. They did not need blood from my control when I went last year. BTW all I had was a cup of yogurt prior to traveling on the bus, morning of my last draw.
the cafeteria at Massachuseetgs general Hospital has a a wonderful selection of everything, including omelettes made to order.Very reasonable prices. I eat breakfast there following my 9 or 10 am blood draw everytime I go. My controls liked to eat there too. Good fuel in preparation for Boston sight-seeing.

God Bless,

Thanks Brunetta,

We just got back from Boston a few hours ago. I couldn't read the internet in the hotel for some reason even with free wifi. I had a terrible low episode of 29 the night before we left and I took way too much sugar which spiked me way up so didn't know if I would be ok to drive etc. But I was determined to go so we did. My bg was erratic a bit but I think it is stablizing now more.

Dr. F wasn't there I don't think so we didn't get to meet her but we talked with Sophie for a long time which was very interesting. She is so nice! She took more blood from my control than from me. She said they can't tell you about the T cells but she will tell me about my C peptide in October. Those are the main things they test for as well as some other antibody testing. They freeze the blood samples and send them to Sweden.

That is interesting then I guess they do the tests on your blood samples after they establish if you have them and how many?

I said I would be interested in doing the phase two and made an appointment for another blood sample for next year at this time too. She said she thinks they will start phase two in a year. My friend who was my control and I are going to make a donation and I'm going to advertise the study everywhere. Maybe I will even do a fundraiser too. I hope they get all the funding soon.

We had eaten breakfast before we went there so we didn't get to the cafeteria which the guards said we should try, but we went to Harvard to walk around etc. Then I was so tired and had to go back to the hotel to sleep.

I'm so tired will write more about my trip later and post some pics... I didn't take that many and only with my cellphone. :)

This is pretty interesting. I've been to the Lab 4 times, I think. My gosh, they've drawn a lot of blood from me. I first went Jan, 2010.

I've never met Sophie. I wonder if she's new. Did you talk with Nick? I have another appt. in Oct., but it looks like I'm going to have to reschedule. My son got married last weekend, and I spent a lot more money than I thought, so I'll go back next year, I guess. I'm gonna try real hard to schedule a time when I can talk to Dr. Faustman again.

I'm still kicking myself for not taking a tape recorder the first time I went. She talked to me for about 45 minutes that time. I tried to write up notes after that appt., but I've lost them.


Hi Tom,

That is great you have given them blood too... how many times did you go? Sophie said I could come back next year around the same time so I just made an appointment for then. I'm not sure if she is new but I had the feeling she may be as she was discussing her job and how excited she was about it. I didn't talk with Nick, only with Sophie, she is the director of the lab I think or another similar title, she arranges all of the appointments and does the blood draws and such. We said hello to someone else who was her assistant maybe I think.

Congrats on your son's wedding!

I hope you can get there in Oct or another time to see Dr. F again, a tape could be another way to promote this also and help raise the money needed for phase 2. I'm going to promote this at FB and other places also and I have signed up at Dr. F's page at FB.

One of the interesting things Sophie said was that I have been fighting this off my whole life most likely and then for whatever reason my immune system was weakened which caused me to not be able to fend off the bad T cells enough anymore. So that whole T cell reaction is probably going on for years before we show signs of D.


Insulin pens once started don't need to be kept in the fridge, unless the temps are extreme, but right now in Boston, it is not extreme by any stretch of the imagination. So don't stress, enjoy the ride, test often and stay happy. Boston is a great city to explore, the Aquarium is fun, Fanueil Hall and Quincy market are great for shopping.

Hey Ellie, how did you get involved in the study ? Heck I live in Boston so it would not be a big issue for me to travel in to town.

I'm already back- I didn't know you are there or we would have said hello.

I emailed and filled out a form at first which my brother sent as I couldn't seem to do that on my computer. Sophie contacted us in May- at first my brother missed the email and so I didn't know they wanted blood samples till last month- then I emailed and called a couple of times and talked with Sophie eventually and she said they had openings now- they do testing Monday, Tuesday and Thursday mornings.

You should call and make an appointment- it would be really easy for you to do obviously! Which is great... If you have someone who isn't a relative for your control you bring them too- they are having trouble getting controls. The control can't have any diabetes or other autoimmune conditions and neither can any of their relatives. If you can't find a control they will provide one for you.

Giving the sample doesn't mean you will be selected for the trial as far as I understand, but you're part of the whole research. To be eligible to be selected they have to be able to see the Bad T cells in your blood sample.

In phase one they had only three people who were acutally receiving the vaccine- I think they were all people who had had type 1 for many years because Dr. F wanted to see if it was possible to stimulate insulin production in people who have had the active disease for years and who may have very little insulin production if any left. I think that is why they use the lab in Sweden because they are very good at detecting c peptide- better than any other lab, but it's very expensive so they only ship blood there once per month.

Anyway I will message you with the contact info and here is the link for the lab/Dr. F.

ps. I do carry my insulin in a lunch bag now with an ice pack because it has been so hot here, and as a precaution since mine seemed to be weakening faster. I thought it was pretty hot in Boston too, but I hate hot weather overall so it always seems hotter to me than it is.