Type 1 Diagnosed at a later age

(Kathleen) #81

Thank you for sharing your story. It really is a lifestyle change. I was asked not to work out until I had the disease under control. Do we ever? I lost a lot of muscle mass. Exercise is essential. Good luck with your journey. It sounds like you are doing an amazing job!

(Kathleen) #82

Very good point. Fortunately I had for just over a year a nurse practitioner through my Endo’s office that is a Type 1!

She wore a pump and had two children with Type 1. She was amazing. I was then transferred over to another Endo within the practice. She is very good. But I totally agree with you. The doctors and educators should wear them as well. Thank you for sharing!

(Kathleen) #83

Thank you! For a long time I thought I was in a small group. It’s confronting and sad to know there are many more like me out there. Everyone has been very supportive, sharing their stories.

(Dennis J. Dacey, pwD) #84

Hi Kathleen @wittersk, I’m not surprised that you found so many people here who were diagnosed with “juvenile” diabetes “later in life”.
As you must have learned by now, the majority of people diagnosed with TypeOne Diabetes are adults; this became a statistic several years ago when doctors became better educated and diagnosed scientifically rather than by looking solely at a date of birth.

(Kathleen) #85

Thank you…you have been a wealth of knowledge.

(Jess) #86

Hi Andy (aka Billy Bad Ass),

I just read your post about going to London. PLEASE tell me how that goes, and I would appreciate any information you can give me re: traveling with supplies and how much “stuff” to bring. I haven been diagnosed less than a year ago, and my family and I are planning on taking a trip to the UK in July. I am pretty nervous about the whole thing, between supplies, what the time change will do to my BS, and how the hell to eat over there…

Thank you!

(Andy) #87

First off, put diabetes in perspective. Yeah, you have to pack a bunch of crap you didn’t used to, your internal clock is gonna get messed up (depending on where your traveling from) and I’m gonna go out on a limb and say you might as well resign yourself to the fact that your gonna have control issues while there.
Beyond that, HAVE A BLAST!!!

  1. Airport security. IF you’re on a CGM, ask for a pat down. might want to get a doctors note saying what you have attached to your body. Some of it (supposedly) cant go thru the body scanner. What I did? I put my receiver and a spare sensor in a clear bag and handed it to the TSA agent. They swab it down and pass it thru for you to pick up on the other side. Then, since I had a sensor inserted in my arm, I asked for a pat down instead of the metal detector walk thru or the body scanner. At LAX the pat down was pretty thorough. (Not a job I would want to do…the guy explained before hand just how thorough he was gonna be and he stayed true to his word)
    The rest of your family will already be done and waiting for you on the other side. Just tell them to relax! You can’t go thru any faster than the TSA wants you to.

I went thru the same process at Heathrow but ran into issues with the Supervisor who wanted to know why I didn’t have paperwork explaining why my receiver and extra sensor couldn’t go thru the machine. I had paperwork from my MD saying I was T1D and had devices attached to me and I had paperwork explaining I needed a “pat down” and visual inspection. The one thing I didn’t have which they told me I needed was paperwork explaining precisely why my Dexcom couldn’t go thru a body scanner. They let me thru after a pat down but told me that the UK is pretty tough on this type of thing and the more paperwork you have, the better.

As for what to bring? all depends on how long. The usual supplies you would need daily and then multiply that by 2. (I’m one of those “just in case…” kinda people. Your gonna need something to carry insulin in. I went with the Frio insulated bag. Its really convenient. Just google Frio insulated insulin bag. Its flexible and keeps insulin cold for days and days and days.

How to eat while there? Good luck with that! lol. I started out doing really well and gave up after a couple of days. I was more interested in sampling different stuff and kinda guestimated carbs. I’m guessing I had a 65% success rate? Oh well, I was on vacation…

The time change took its toll on my body somewhat. I do Lantus shots every 12 hours and I always sucked at math so that was kinda problematic. “Lets see, I usually do this at 9am and 9 pm in Los Angeles. London is 8 hours ahead so that means I need to shoot up at 17am and 17pm in London. No wait…that’s not right, you subtract the time changes and then account for the 11 hour flight. Wait…did I give myself my shot before we left for the airport? that was 2 hours ago…AAAAAAARRRRRGH!”
I ended up making it easy on myself and just gave myself shots in the morning and evening while in London. Must have done something right because I only encountered one nighttime low the entire time. Sadly that low was because (I think) I did something horribly wrong. I went way low one night and couldn’t get my number to go back up. I polished off an entire Big Big bag of M n M’s and chased it with a Pepsi and never got past 65.
We did alot of walking so be sure you account for that extra cardio when calculating insulin. Heat and cardio make me drop fairly fast so keep your candy, juice, or whatever close at hand.

Other than that, have a great time. I strongly suggest getting a London Pass. It makes things alot easier and some of it comes with line skipping options. Lines in the summer tend to be really really long and anything to skip that is totally worth it. !!!

Also- word of advice? I know you’ll be carrying around a backpack. Comes with the territory of being T1D. Don’t let the familia talk you into being the carrier of all personal items for everyone. “Can I put my sunglasses in your bag? Can you carry the maps? Can you carry my phone? Can you carry these souvenirs?” etc…etc…etc… I’m a team player and I’m the Dad but i grew very frustrated with people digging in and out of my bag. I’m a bit anal retentive and every time someone started digging thru my bag for their (chapstick, hand lotion, gloves, sunglasses, kleenex, phone, clarinet, bowling ball etc) I’d have to stop and recheck that nothing diabetes related accidentally fell out.

(Kathleen) #88

Wow! Thank you for all this information. My husband and I are facing retirement in the near future and one of our goals is to travel. So this is very helpful! Again, you should write a book. You have an amazing way with words.

(Jess) #89

Andy thanks for this - it was extremely helpful! The math sounds like it could get confusing, but I think that’s the least of my worries. In addition to counting carbs I also have gluten sensitivity and am allergic to dairy (I sound like a load of fun, don’t I?). I am determined to make this work, though, and to ENJOY myself. That’s why we are going. I have always been a little on the anal retentive side as well, and once I got the diabetes diagnosis, I sort of said, “*$#% the money, #@&% the fear, let’s do this trip while I still can!” So, trying to “let go” and enjoy life more since my diagnosis…


(Jess) #90

Oh, and I am in New York (Syracuse - Go Orange!) so I have a little less distance between me and the UK, but still considerable!


(Kathleen) #91

Jess, best of luck with your trip! You are a hero for going. If the “normals” only knew.

(Andy) #92

Just be sure you have plenty of whatever you use to fight lows, on hand. I slipped up on my first vacation (post diagnosis) and forgot to replenish my supplies.
Ended up low at 3 am in Paris. Looking back, I suppose I coulda raided the honor bar in our room but my “old self” kicked in and I wasn’t gonna pay honor bar prices for a Hershey bar. Nope, wasn’t gonna do it. I’d go out and find sugar elsewhere.
In Paris. At 3 am. And I don’t speak French. Only thing I learned is that they don’t have 7-11’s in the heart of Paris. I did stumble across an underground night club, still open. Dimly lit and full of an array of Parisienne night crawlers and societal flotsam. Sat myself at the bar and guzzled a warm Coke.

Not exactly the same as sitting in an outdoor café, wearing a beret and perusing thru “Le Monde”, but it served its purpose.

Moral of story. Raid the honor bar if necessary.

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(joe) #93

been in that situation - the US, Ireland, England, Netherlands, all (typically) have a coke machine near the ice maker, or a small store at the front desk, got my derrière out of hot water a few times.

(tom) #94

they do use the ace inhibitor class of meds (lisinopril most commonly) which is indicated for blood pressure but also has a protective effect on the the kidneys and is used in diabetics

(tom) #95

diagnosed in '83 at around age 33

(Kathleen) #96

I will have to ask my Endo at my next appointment. I am also on cholesterol medication even though my cholesterol was always good. I thought that was for my kidneys. Thank you for the information. I must ask my Endo more questions.

(ceolmhor) #97

I was diagnosed T1D at age 72. Just turned 75. Our oldest son is also a late-onset T1D, diagnosed at 29. I tell everyone I inherited it from him. :wink:

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(Kathleen) #98

Wow that is late in life. I thought 52 was late. Sorry to hear about your son…nice play on inheriting it from him. Take care.

(Fran) #99

I’m 62 - diagnosed at age 33. On the pump for 6 years and it’s definitely better. I don’t use the sensor however. I find it hard to use and hope Medtronic develops a better sensor. Being a type 1 diabetic is a daily (24 hour) struggle. I eat correctly (most days), work out every day at the gym, drink a glass of red wine each day and enjoy life.
My real issue with type 1 is the low blood sugar and how it affects me. Sometimes I panic and overdo the response (too much intake of carbs or orange juice), then have to take a bit of insulin (Medtronic 630G pump) and exercise. I wonder if anyone has issues psychologically with the highs and lows? At times it is embarrassing during a low episode especially in business. Thankfully I have an understanding and caring wife who has been very supportive these years. I suffer no side affects as a result of my diabetes - no spots in my eyes, etc. I am not overweight, in fact I’m in very good shape (taking Krav Maga now - great fun). I have worked very hard to understand my condition and find that it is a different journey for each of us with TD1. It is at times very lonely.

(Marina) #100

If there’s one thing you learn from all this — trust yourself! It’s your body, no one knows it as well as you do. I am not telling you to be your own doctor — but you certainly need to question anything that you are not comfortable with! Persist!
ps. My glucose was waaaaay off – and the doctor did not see fit to notify me — but when I learned the results and ASKED – I was sent to emergency.
That was long ago and far away — I stay informed --its my life!

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