36 years of Type I diabetes

Dianeked
By Dianeked Latest Reply 2013-02-10 10:23:51 -0600
Started 2010-06-21 13:43:01 -0500

I have seen so many groups to help Type II diabetics. I am a Type I. I have had it for 36 years. I am interested in hearing from those who have had Type I as long, if not longer, than I have had it. What tricks have you learned to stay healthy? Does anyone have problems with scar tissue from shots? My arms are visably swollen and after so many years when I give a shot in my leg… it is like I didn't even give a shot.. the insulin doesn't absorb or take. Any advice? I am tired of feeling alone on this.


32 replies

Type1Lou
Type1Lou 2013-02-07 09:23:25 -0600 Report

Dear Diane, I've been a type 1 for 37 years…diagnosed at age 27 and am 64 now. I started using an insulin pump in 2011 and am kicking myself for having waited so long to go on one. Prior to that, I was on MDI (multiple daily injections) of Lantus and Novolog. I love pumping! The most critical factor, I've found in managing my diabetes is limiting my carbs to no more than 120 grams of carb per day. Reading Dr Richard Bernstein's book "Diabetes Solution" in the early 2000's was a turning point for me. Of course, we also need a competent and responsive medical team to set us on the right treatment path as our bodies change…as they inevitably do as we age. You are definitely not alone. If you have more specific questions, please don't hesitate to ask…we're happy to share our experiences and, hopefully, help.
Lou

MoeGig
MoeGig 2012-05-05 13:02:00 -0500 Report

Had to use a calculator to see that I've been type 1 for 47 years. My biggest problem is waking up to a roomful of emt's administering glucose in my arms intravenously. For a while my wife had to call 911 once a month. Solution? Set the alarm for 2:30 am every night to check blood glucose. If below 100, drink a bottle of gingerale and head off the upcoming ultra-low. It has been working very well. Have managed to keep the A1c in the 6's and avoid complications all these years.

veggieD
veggieD 2012-05-05 09:18:18 -0500 Report

I have had diabetes for 35 years now, t1 and I am on the pump. my body has a hard time accepting even the same medicine in pen form, novolog, and lantus. like this morning. like I did n't even give any shots. I am trying to get off pump since the cost of supplies keep going up and all I can afford is the insulin. I finally had to find one last tubing for pump somewhere in house, as I am fighting an infection, don't need a high bs too. so far so good on everything! I have been struggling with bs control for a couple of years now, since my husband and father died. stress will do that too you! and depression that causes me to eat and drink more than what the medicine says I'm allowed. Why does the body resist other medications and how it is given! I don't want to take double the dosage ! tryin to conserve here! and if I dont eat and still take med, my bs is still high! I can't win! I do switch sites and switch med boxes. sometimes the med is too old. and site is too scarred.

margokittycat
margokittycat 2012-05-04 20:42:46 -0500 Report

Dianeked, I to have had the diabetes for a little longer than you and have the same issues as you. My arms are always visably swollen no matter what we do it seems to never get better. I can't say anything about shots in the legs, I have other places that that happens when I take a shot there. I am kind of limited to where all I can take shots due to an acciednt that ended up causing me to have surgery on my left arem, shoulder and bicept, and I can not reach acroos the front or behind me with that arm and I can't take shots in it any lond due to all the hardware they had to put in it. I had one doctor tell me to have lipo done on my arms and then they wouldn't look swollen all the time. Thanks but no thanks right?

You are not the on;y one to go through this.

mcneley1
mcneley1 2012-05-04 20:25:41 -0500 Report

I have had diabetes for 44 years When i was giving shots i got scar tissue the stomache i found works the best. But I am on the pump now and I would not go back to giving shots. good luck would love to chat with you anytime

MHoskins2179
MHoskins2179 2012-05-04 15:19:59 -0500 Report

Hi Diane! I'm a little late to this discussion party, but wanted to echo what others have said about you absolutely, positively NOT being alone!! So many have felt that way through the years, but it's not the case. And I'm amazed at what this Diabetes Online Community has been able to do to connect so many of us. I've been type 1 since the age of 5, in 1984. My mom was also diagnosed at age 5, back in 1958. I've loved blogging through the years and connecting with people, and being able to interact and even have real life "D-Meetups" with fellow PWDs! Would love to connect more to chat. Drop a line when you're able!

Type1Lou
Type1Lou 2011-06-16 10:21:00 -0500 Report

I've been dealing with the big "D" since 1976; diagnosed at age 27 so didn't deal with it as a child or teenager. Grew up in a household where Dad had diabetes (diagnosed in his early 60's). We've come a long way since then! A turning point for me was reading Dr. Richard Bernstein's "Diabetes Solution" about 7 years ago. He was a type 1 who returned to school and got his medical degree to gain credibility for his approach (successful) to dealing with his Type 1 diabetes. His solution was to eliminate the carbs long before carb counting was adopted by mainstream diabetes educators. Once I started curbing my carbs, I got better control. (e.g. When I serve my husband spaghetti, my plate has french style green beans with sauce over it instead of the pasta I serve my husband. If I order a burger, I eat it without the bun.)

I've encountered a big bump on the road to good control in the past year with severe morning lows and may be moving from multiple injections to a pump soon. I think my aging body is throwing me some curves. Returned to see an endocrinologist last December after I felt my PCP was trying to slot me into a Type 2 approach and not correctly dealing with my problems (how dare I question his treatment!?). That was a lifesaver! I'm seeing the endo again next week. They've been adjusting my carb ratio up from 15g/unit to now trying 25g/unit. I've also started walking 4X/week with a friend and find it helps. I haven't had the problems with absorption that you are experiencing…yet.

You're not alone! Ain't this site GREAT!

marla50
marla50 2011-06-16 08:17:51 -0500 Report

Hi,U are not alone! I do feel we rtype 1's are neglected. I'll get into anarticle and get all excited and then discover it's for type 2's. I know there's alot advice that both types can use. I have had diabetes for 45 years and I too like most of the others am using the pump. I know without insurance it is very expensive but if u have a way of getting one it is your best bet. I'm sure you rotate but maybe u could skip using like your left arm for awhile then your right arm etc. My step brother used his calves. I had never heard of this. Have u checked with your diabetes educator to see if your using all the sites there is? I wish you luck.

Biogirl
Biogirl 2010-07-01 22:40:57 -0500 Report

36 Years is a long time. I was close with a type diabetic for a few years so it became my hobby to help him. He was stubborn, not doing well now):
I now work for biochemist who has reversed the "unreversable" related to diabetes. I can't write anymore at the moment but I did want yo comment on your post, I just hopped on here tonight, first time. Can reply with more info if you have an interest. This is physician endorsed and he was approved for clinical trial but bureaucracies abound.

packrat2
packrat2 2010-06-25 13:49:50 -0500 Report

HI..I am 68 and have had type 1 since I was 20 years old, I am on the pump now…you are not alone with long term type 1..
good to hear from other long term type ones, see if you can get on a pump…regards packrat2

Richard157
Richard157 2010-06-26 12:47:27 -0500 Report

Packrat, in two more years you will be eligible for the joslin medal. It is offered by the Joslin Diabetes Center in Boston. You can research that or just send me a message and we can talk about it.

Richard157
Richard157 2010-06-25 13:26:22 -0500 Report

Hi Diane, I have been away for 13 days and am just returning to the site and reading your message for the first time today.

I was diagnosed in 1945, when I was 6. So that is 64 years with Type 1, and I have no diabetes complications. I had measles and mumps in the spring of 1945 and my symptoms began soon afterwards. The damage caused by those diseases probably caused damage to my pancreas. There are no other Type 1 diabetics among my relatives.

I used injections for more than 61 years, prior to beginning pumping in 2007. Most of my injections were in my upper abdomen, above the navel. The flesh became so thick and tough that a needle would sometimes bend whil taking a shot. No doctor ever told me about scar tissue and the need for rotating sites to avoid it. I learned in 2007, for the first time, that I had scar tissue. I now use my lower abdomen for several weeks keeping the sites about 1.5 inches apart, and then use the tops of my upper legs while the abdomen heals. I can never use my upper abdomen again. There is permanent scar tissue there. When I place an infusion set (pumping) on my upper abdomen, I get an alarm from my pump saying "No Delivery". That means no insulin can enter my body because of the scarring. Even if the insulin did enter my body the absorption would be very slow and the blood sugar would be very high.

I have learned much more from fellow diabetics online and from researching online than I have from doctors and other medical professionals. I eat less than 150g of carbs per day and exercise every day. That keeps my total daily insulin dosage low and I do not gain weight. The more insulin I use, the more weight I gain.

I could go on and on with other details, but i would rather you ask specific questions so I can address your particular issues.

Richard

LITTLEJ9702
LITTLEJ9702 2010-06-24 01:48:37 -0500 Report

YEAH I WISH THEY COULD FIND SOMETHING TO HELP US TYPE 1 DIABETICS I HAVE BEEN ONE FOR LAST 20 YEARS AND I FIND IT ALOT EASIER AND LESS PAINLESS TO SHOOT THE INSULIN IN THE STOMACH AROUND THE BELLY BUTTON BUT IF IT GETS TO ROUGH ON ONE SIDE DO THE OTHER AND TRY TO KEEP WITHIN 2 INCHES OF THE BELLY BUTTON AND YOU CAN ALSO PUT THE NEEDLE IN TO YOU ABOVE THE BELLY BUTTON TOO IT SEEMS TO BE WHERE THE PANCREASE IS SO IT STARTS WORKING FASTER AND IF FEEL TOO HIGH DO THE SHOT AND JUST WALK AROUND YOUR HOUSE.

AngeLsLuv
AngeLsLuv 2010-06-23 01:11:27 -0500 Report

Hi DianeKed,
I've been a type 1 diabetic since 1977.. For a long time I was taking 2 - 4 shots a day but have been on an insulin pump for about 4 years.. Try getting on a pump..Scar tissue was a huge issue with me.. I would end up with celulitus and need to get the puss taken out all because of all the injecting.. Try using your stomach to inject more frequently instead of your arms and legs.. Your absorption rate could be down, and that's why your blood sugars are high.. Also, Local application of heat or massage after an insulin injection increases the rate of insulin absorption. I could go on and on about all the problems I've had with my diabetes through the years, I'm not perfect at it but I've been trough it all so I have tons of experience :-)
*Remember, You are not alone*

Crashnot
Crashnot 2010-06-22 07:21:56 -0500 Report

Hi Diane,

I'm 43 years of type 1 and counting. We certainly are in the minority on the discussion boards. Guess it's a good thing, but it's nice to have more voices to hear from too.

Richard on this board will surely chime in soon, he's pretty amazing and I'm sorry I can't remember how many years you are at Richard, but it's over 60 if my memory isn't totally shot!

I used to get massive scar tissue when I was a kid, in my teens and early adulthood. I just HAD to learn to live with the pain and rotate religiously to prevent that scar tissue. Also, I do not use my legs or arms anymore, I have much better absorbtion in the belly area. I use the waist all the way around, just not in back. And I do have a bit of scar tissue in front from not rotating there. Otherwise, I'm pretty good on the other sites. And yes, those scar sites are nice to give shots in. Totally numb! But not good for anything else I fear. I used to have points on my buttocks from the scar tissue there, lumps on my thighs and arms. And after years of avoiding them, they HAVE gone down!

I've been on the pump for a year now and really like it. I also got the book, "Reversing Diabetes" by Dr. Julian Whittaker and use his vitamin regime to hopefully avoid future complications. The book is available here and Amazon, well worth the $14 or so. Yes, it is oriented toward the Type 2 cash market, but everything in it also applies nicely to Type 1.

Happy to have you here!

Lisa in Ontario

Dianeked
Dianeked 2010-06-22 16:45:05 -0500 Report

Thank you so much. I am glad I am not the only one. I do give shots around my belly button area… I have not tried around the waist. I may do this. Insulin is supposed to absorb quicker from the belly area. I definitely have lumps on my arms!

I have so many questions for comparison. I am not sure where to begin!

Diane in Illinois

Crashnot
Crashnot 2010-06-22 20:20:20 -0500 Report

Let's hear them! Just start rattling them off. Come to think of it, I think I'm going to start a "You know you've been diabetic too long when…" post. We can all do a little ranting :-)

roshy
roshy 2011-06-16 11:49:28 -0500 Report

has this posted been posted yet?? im ready to arant and rave about the joys of type one!!

Gabby
GabbyPA 2010-06-21 18:26:53 -0500 Report

Richard is one of our members who has had Type 1 for 64 years. You can read some of his posts here: http://www.diabeticconnect.com/discussions?query=richard
He also has a book that is for sale on Amazon.com.

Book Title: BEATING THE ODDS: 64 Years Of Diabetes Health

.Kindle Link: http://www.amazon.com/Beating-Odds-Diabetes-Health-ebook/dp/B003M5IQ0Q/ref=pd_rhf_p_t_1 Bullet-link

·Amazon link: http://www.amazon.com/Beating-Odds-Years-Diabetes-Health/dp/1450515967/ref=sr_1_1?ie=UTF8&s=books&qid=1268873383&sr=1-1 Bullet-link

Richard is great, just invite him to be your friend and I bet you will have a lot of stories to share.

Hornec
Hornec 2010-06-22 09:28:27 -0500 Report

Hi,

I, too, have had Type I since I was 12. I'll be 49 next month, so I guess that is 37 years. I really try not to think about it because it scares me.

Has anyone told any of you that a virus is what prompted the diabetes? Three of us, who were in the same grade in my small town, all discovered we had it the same year. Kind of creepy.

Crashnot
Crashnot 2010-06-22 10:26:26 -0500 Report

A friend of mine with a diabetic son posted a link about that virus a few weeks ago, so I don't think I can retrieve it anymore. I had strep throat when I was diagnosed at 11 months of age, but the strep virus is not the one they have linked to causing diabetes. Will see if I can dig up that link though!

Lisa

Dianeked
Dianeked 2010-06-22 16:48:38 -0500 Report

I have heard the virus scenerio since I was young. That is very odd that 3 of you got it the same year!

I was the Only member of my family to have Type 1. Family used to blame my mom for not taking care of me (as they felt that was why I got diabetes). My Mom was a very positive influence on my life. Always reminding me I can run, jump and play just like any other kids… I just needed a break for medicine and to eat. :-)

What types of complications, if any, have you run into?

bettymachete
bettymachete 2010-06-23 09:42:04 -0500 Report

My cousin who is type I also was told she got hers from a virus as well she is now 44. She got it when she was around 12 also. She is now blind. I am going to call and see what she can tell me.

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