Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
Related Stories
52 Comments
During which of the following life transitions did you find it most difficult to manage T1D? Select all that apply to you. Cancel reply
You must be logged in to post a comment.
Most difficult for me was when I was diagnosed with diabetes, age 35, with no meters, no accurate way to know what your blood sugar was, having to work and had 2 children, juggling all without knowing your blood sugar and worrying about what might happen, getting lows, that was the hardest for me. the Technology has completely changed how to deal with it and the analysis of algorithms – wow much easier
I selected “other” for the same reason. I was 32 when diagnosed and, like you, was stuck with little techology to help. Testing urine was the only thing you could do and that really, really helped no one! But I’ve always been glad I was an adult when I was diagnosed.
Not a legitimate question. Anything can or might not add challenges. Mostly disruptions to routines. We adapt.
No frame of reference for this. I was diagnosed at age 66 while taking care of my dads death and resolving his estate.
Another example of stress as a causative factor.
I became diabetic at age 57- first thought it was type 2 but later was confirmed type 1. It was a new challenge added to my teaching career, coaching responsibilities, competitive running, and family life. I feel like I am a strong individual willing to face obstacles before me. Glad to be active and able to care for myself and help others.
Since I have T1D called LADA, it has been most difficult to manage living alone as a widow. A T1D is never free from the 24/7/365 routines and dietary restrictions of this disease. Getting a CGM has been my biggest help and purchasing an adult tricycle had made exercise safe and fun again.
Aren’t tricycles fun? Wow. If you had to give up bicycling due to balance problems, a trike is great. Try them out free at a local dealer. Free fun even if you cannot afford one. Or build your own electric trike.
I was diagnosed 54 years ago as a child, so I would have chosen All of the Above If that was an option. Serious issues with transitions, especially in the first few years after diagnosis when nothing was predictable.
It was hard to pick just one! (Except for retirement, because I am not there yet.) I answered college because there were so many changes to lifestyle and routine. Adolescence may have caused bigger changes to my BG control, but the technology was not good and I had no way of knowing. It was not “difficult” to manage T1D back in those days, but I prefer today’s technologies and the hassles that come with them.
Undergoing treatment for breast cancer was the toughest time for me out of my 50 years of T1. When I got the diagnosis my first thought was “how am I going to manage my diabetes?” Not “will I survive this?” A lumpectomy and 6 weeks of radiation was a pain, but I’m still here so it’s all good.
I remember when I was diagnosed with breast cancer. The only person worried about my control was my oncologist and the only reason he was, was because my BS was always in the 200’s when I would come in for treatment. What he didn’t see was how low I would fall after treatment. I fixed that though, by using Novoline R before meals and IV steroids. He couldn’t grasp the concept, no matter how many times I or my endo explained it to him.
So happy you beat it and are still here, Cindy. 🙂
I haven’t experienced some of the items on the list (yet). I put changing jobs and the loss of a loved one. Starting somewhere new – where I don’t know what my schedule will be for the day or when I’ll be able to take breaks – can be really challenging. Not to mention the roll that stress plays on blood glucose management. And then I put the loss of a loved one because I remember the day of my grandfather’s funeral being challenging, again, for schedule reasons, if not stress reasons. I barely had a chance to eat because so much was being asked of me. I was supposed to help get the house ready for the the kaddish service and _everyone_ wanted to talk to me after the funeral. Unlike the rest of my family, I couldn’t just grab a bite and eat on the go. I needed a moment to sit down – undisturbed – to check my blood sugar and calculate my insulin dose. Not having a moment to myself just added to the already extreme amount of stress I was experiencing that day. We were all looking out for my grandmother, of course. But I wish someone had been looking out for me.
On the other hand, I remember adolescence being relatively easy. In school I had government mandated routine. I ate at the same times every day, I exercised at the same times every day, I slept at the same time every day… The only variable really was what I was eating. I actually miss having that much structure in my life.
I said adolescence, but there’s a caveat- my diabetes really could not be controlled in any significant way until I got a home glucose monitor… and they weren’t invented till 18 years or so into my disease. (I was 29 when I got my first).
I added”other” to my list for premenopuse and menopause. Probems with low blood sugars until hormones were prescribed.
I’ve also recently been experiencing this, with BGs running high before my b period starts and then trending very low on the few days after my period ends.
I was dx’d Type 1 in 1976 while in my late 20’s. I had just separated from my first husband and was dealing with a stressful but rewarding career. I feel blessed that I did not have to deal with diabetes as a child or as an adolescent. I also had the “benefit” of watching my Dad deal with his diabetes (diagnosed in 1953) as I was growing up. I think watching my Dad deal with his diabetes (testing, injecting, diet and exercise) made it easier for me to grasp my diagnosis and deal with diabetes going forward. Having lived well with his diabetes, my Dad passed away of cardiac complications 2 years prior to my diagnosis . We have so many more tools and much better knowledge today to help us navigate life with diabetes than did my Dad.
For me it was moving residences – having to find a new Endo (who is ot an Endork) as been difficult. I was Dx’d with T1D at age 30, and while I change “jobs” in terms of promotions and transfers, it was the same employer so my health insurance basically stayed the same. Whew!
College. My schedule was always changing. And between college and working full time I was always on the go. Didn’t have the time nor the resources to take care of myself properly. So grateful I survived it! Ambulance ride for the college parking lot for a low where I couldn’t figure out how to unlock or exit my own car for hours was scary! Thank goodness for a bystander that saw their was trouble!
Post Faustman
Puberty was terrible.
The most difficult time to manage T1D, was transitioning from my pediatric endocrinologist to adult endocrinologist. I was in such a habit of seeing the endo, RD & CDE all at the same visit, that when I was just seeing my endo and had question’s about diet or tech. I was happy to find out she was on top of everything and then some. It just took abut a year for the two of us to figure it.
I was diagnosed at age 19 so I didn’t have to deal with puberty, but I have been in perimenopause for the last year and it has not been easy.
Finding a new endo and Ins co changes.
None of the “usual” transitions that I experienced posed any challenges to managing my T1D (now in my 27th year – diagnosed at 40). What did pose a challenge was when I had to undergo open heart surgery about 8 years ago to repair an aortic aneurysm. The hospital didn’t have any protocol for managing a T1 diabetic on insulin pump therapy. They started managing me with injections, but after it became clear that wasn’t working too well I convinced them, during my post-op stay in the hospital, to let me go back to the pump. My basal rates and my body were badly out-of-synch at that point, so I set up new basal rates and jotted the settings down on a napkin. I got the basal settings aligned to keep me roughly where I wanted to be, did a lot of checking with my glucometer, and changed the settings as needed. It worked out well. But, through all that, I never did have a visit from an endocrinologist. If I ever have to go through major surgery again, I’ll definitely be asking, in detail, about how they plan to manage my T1D!
When I (TD1) had my open-heart surgery at Ohio State Research Hospital (1996), the day after it, the cardiologist directed the staff to allow me to manage my insulin dosage and measure my glucose levels along with the hospital’s glucose-level checks.
I answered College & Pregnancy. College because I was just diagnosed and trying to figure everything out and balance injections, full class schedule, 3-hr labs periods, & multiple part time jobs. Pregnancy, because of the added stress of trying to stay in good control both for myself and the baby. My BGs were probably in the best control if my life during my pregnancies though. More recently, as others have mentioned below, female hormone changes as I approach menopausal age have created some new BG challenges to work around. Never a dull moment with T1D! 🙂
after taking the J&J vaccine…blood sugars yoyoed every day for 70 days frlom 500 to 30
When I changed from Medtronic to tslim during the first month. Love tslim now.
I put adolescence, although unlike most people I’ve gone through it twice (both female and male). The first time was more difficult because I didn’t have the technology I do now, that’s been very helpful. The second time, after starting Testosterone was like puberty all over again, but had the “joys” with menopause thrown on top. At first it was a wild ride with sugars getting out of the tight control I had, but now everything is back to normal 👍
Thanks for you input. I’m considering daily testosterone cream/ointment applications with 3 month lab tests to tweak to increase motivation, self-confidence, and regain muscle mass…all under medical supervision.
College years in my late teens and early twenties were the most difficult because we were still living in the dark ages of limited diabetes care approaches.
Other than that I have been lucky & blessed to work with cutting edge endocrine providers and have learned to roll with the punches to keep up with changing trends in diabetes self-care. In fact life with T1D seems to get easier with new developments in self-care technologies and as I mature and age with the wisdom that comes from experience.
Honeymoon phase was by far the most difficult. Knowing how much insulin you would still produce vs how much the doctor was telling you to take made it very difficult plus it was 30 years ago and monitoring was not nearly as convenient as it is now.
Menopause
My metabolism changes as I entered midlife. Adapting to changes is a learning curve.
Tom R
Another continuous ‘transition’ was dealing with a period each month – Always skewed my BG (the insulin pump helped me navigate it better, but it always proved a challenging time).
After moving from upstate NY to southern CA, I experienced many lows at first due to a change in eating. Fewer carbs & busier.
I would say when my daughter was born. Sometimes her mom would have to go out or work on Saturday and then I would have to take care of your daughter. I could not have a low then. Somehow while our daughter was small I did not have any lows while I was alone with her but it was nerve racking.
My adolescence was in the 60s, before home glucose monitoring was available. During that time and the 70s, my control was very poor. I had an insulin reaction almost every afternoon at about 5pm, because that’s when my morning dose of NPH peaked. At other times, the only indication that my blood glucose was too high came in the form of the Benedict;s urine test. Since you don’t begin to spill sugar until 180 mg/dL or higher your BG was usually too high by today’s standards.
perimenopause
More time to do physical work about the house/garden led to lows until I re-learned.
I did not have TID during those transitional times by the pandemic closures and disruption to social life was very difficult for me as time went on.
Adolescence absolutely sucked! Transitioning from a girl to a young woman dealing with reactions or “orange” urine tests made life threatening. A glucose meter changed HOW and EXACTLY WHAT my bgs were for me to treat myself! I still had to grow up!!!
Became type one at 49. Been adapting for one and a half years now. It’s super hard to live one way for a half a century then kablam life as you know it over. Thankful for sites like this that help.
None of the above.
I chose other. The options which affected me after dx at the age of 30: change of jobs, (attempted) pregnancy, and coping with the loss of loved ones were all about the same and didn’t seem to affect my T1D management. What affected me the most were other health concerns, especially a recent neurotoxicity from too many neurological medications.
Everything prior to CGM was “difficult”. There were no useful tools during my childhood, adolescence, college years and pregnancy. Pregnancy made the BG swings absolutely wild.
Since adopting CGM, I can face any life stressors while still keeping tight control – even the dreaded use of steroid medications. The right tools make the job so much easier.
Traveling. I find it very stressful to try and figure out just how many vials of insulin, pumps, and CGM sensors to pack. I overestimated all my diabetes supplies and ended up short on my medication that was non-diabetes-related.
I survived and enjoyed 95% of the trip, but it is hard work to plan for being away from home.
Menopause has been the most difficult!
I’ve been type 1 for 61 years, so high school and college were still all guesswork with only Testape. Pregnancy was the weirdest but I got my first meter (the size of a shoebox) 2 years before getting pregnant and that made a HUGE difference. Doses changed day to day while pregnant but I was testing constantly. It was fascinating when within 24 hours of giving birth my insulin needs went back down! A few years ago when my brother passed away I was extremely depressed and my insulin needs rose quite a bit due to the depression and lack of energy, etc. Thank goodness we can track and adjust things.
The worst time for me (1985) was before I was diagnosed with celiac sprue and in the following weeks adjusting to the new diet.
My T1D was unmanaged from age 6 to 13, when I went into DKA. Adolescence was a roller coaster to get me controlled without an endo available. Loss of my parents within 18 months of each other was hard on me physically. Right now, caregiving a very elderly relative is my biggest challenge. Stress, unpredictable schedules/events, family drama, strain on other relationships has taken a toll on my T1D management. Retirement was a challenge as everyone thinks because you are retired, you are available to do their bidding (this causes “you can’t make anyone happy”/”go away and leave me alone” stress with the constant requests. The job was stressful but retirement has been worse 🙁