Here is my story. I am 30 years old and was diagnosed 11 months ago. Since that time, so much has happened that I am not sure where to begin picking up the pieces. Two weeks after my diagnosis, I started a new job, which requires me to travel a lot. I had accepted the job before I knew I had T1D, so I didn’t realize the challenges that would be associated with eating out and traveling. Two months later, I unexpectedly had to have back surgery, which had its on set of complications: my left leg was numb and I had drop foot. I had to go to inpatient rehab and I was out of work for two months. I went from not being able to walk, to using a walker, to using a cane, and now I can walk pretty “normally.” I still can’t run, which used to be an outlet for my stress. Because of all of this chaos, I had to put graduate school on hold (I was scheduled to graduate in December 2015). I felt so overwhelmed and depressed that I stopped taking my injections. This went on during most of March and April. I finally came to my senses when my eye sight was so blurry I became nervous of the serious damage I might be doing. I went on an insulin pump and a CGM in May, and it is so much more convenient for my lifestyle. The problem is that I have now gained 25 lbs, which has left me feeling horrible about myself, and my body. Eating on the road has contributed to my weight gain, and I would be lying if I said I wasn’t also emotionally eating. Having struggled with body image issues and weight issues for my entire life, I feel like I am living a nightmare. Every morning I wake up wanting to take off my pump because I know if I do, I will lose weight. I have been through countless diets in my life, but I know now that there is no quick fix. I feel depressed and very hopeless that things will ever get better.
If you have read all the way through this, thank you. Putting this into words had been therapeutic. I am hoping that someone can relate to even some of the things that I am going through. Any stories you can share would be greatly appreciated!
Andrea,
You have made the first step to getting your life back for you - and thanks for opening up to yourself. Yes, I read all the way to the end of your note last night and then again this morning. you have been through a lot packed into a very few months, more than most people have in a lifetime, and you have landed on your feet - no pun intended.
I’ve been through all the situations and feelings you are experiencing and conditions except for your back. On my 15th birthday I couldn’t find the strength to move off the bed - yes, for months I kept denying that there was anything wrong with me - and all I knew then [58 years ago] was that people just diabetes just died. OK, I’ve fooled the doctors - me and many others who have concurred and lived beautiful and productive lives even though we must be aware 24/L of our bodies - the “L” if lifetime. In very simple terms, set some reasonable goals for yourself and don’t beat yourself down; it took me 9 years to wake up and begin taking care of myself and by then damage had begun - what turned my life around was meeting a woman who wanted me to take care of myself - and she got me to see a doctor for the first time in about 5 years.
I had to leave college at the end of my first semester because I kept falling asleep with my face in the books [later went back nights and graduated with honors] and after two years of working began an auditing position that required travel with living in hotels and eating and drinking. I have no idea what my BG levels were then because in those years the only way to find that number was by visiting a hospital lab and getting the results a day later. My most serious complication has being diagnosed in 1966 with what was called “Diabetic Retinopathy” which practically guaranteed total blindness within two years - fortunately I was introduced to Dr. Lloyd Aiello in Boston who had a theory about using a laser beam to arrest the deterioration. I volunteered as a guinea pig and let him experiment on my left eye with a modified ruby laser; since then I’ve had hundreds/thousands of laser treatments and still see.
Please, I strongly urge that very soon you see a good ophthalmologist who is familiar with diabetic retinopathy. I couldn’t “see” my eye problem even though it had become serious; these days, there is very good treatment.
I’m in favor of using technology that suits us and I highly recommend the pump. But don’t blame the pump for weight gain - when I was in the Boston area I stayed very busy what with work, skiing most winter weekends, chopping wood and exploring the mountains in the summer and O never gained weight. I move to the Florida Paradise where I immediately gained 10 pounds; after five years here I started pumping and lost all that weight even though I stayed working at my desk until the beginning of my 70th year. I’ve stayed as active as possible during the five years since I retired still pump and would like to add another 5 pounds. I don’t starve myself and actually average more than 230 carbs per day.
Stay in touch, continue asking questions - I will listen.
To provide you some comparisons, I’m 33 years old and was diagnosed in 1988 so I have many more years of experience/training/parental lectures under my belt which you, unfortunately don’t have… but, you have this community and I hope we can help you.
I audited for five years as well and was on the road throughout the U.S., a few weeks at a time, at least three times a year, up until last December. However, again, I already had a handle of my diabetes and had already went through my stage of “I just want to give up” and didn’t check my blood more than a couple times a year at that time, even though I had access to all of the technologies to do so, though, I did get through it without complications, that was only a couple years of my life in college.
My unique and most comparable challenge was the last time I traveled for work in October of 2013. I found out my hubby and I were expecting our first child the day before I flew to Texas from Wisconsin. Within the first couple of weeks of being pregnant while in Texas, my bolus and basal amounts were nearly tripling. I’m already quite insulin resistant and take Metformin because of that, but by the time I reached the end of my pregnancy, I went from taking 10 units for a bowl of cereal at breakfast to over 100. I had to take shots for boluses because the 200 units my reservoir held were barely enough to basal me through the day.
Back to Texas - being pregnant makes you more hungry, so although I wasn’t stress-eating, I was eating more than I should nonetheless. I have had more years to discover what types of food affect blood sugars and the various ways in which they do. Here are some tips for you that took me years to learn, which will hopefully help you get things under control more quickly.
Until you/your doc have a handle on your insulin sensitivities and I:C ratios, try your best to avoid fried foods, especially pizza. Though type I diabetics can eat whatever they want, to a point, as long as they have insulin to compensate, these foods bring extra challenges which involve combo boluses which I just recently mastered after practicing periodically over the last couple of years.
From a fellow female diabetic in her child-bearing years, you will very likely will need to have two basal profiles a month or at the very least will notice just when you think you have a handle on your basal rates, something will change. If you’re experiencing this, the reason is that post-ovulation (mid cycle), you become more insulin resistant due to the hormones that go with it. This resets back at the beginning of your cycle. For me, it’s a difference of a couple of units a day. None of my doctors told me/warned me of this. I had to discover it on my own and then ask about it, which the endocrinologist confirmed.
Consider getting a continuous glucose monitor (Dexcom). That’ll show you when you’re trending and you can run reports on weekends and see what time of the day you’re running high. I’ve found this has helped me forget about having diabetes and thus, feel more ‘normal’. You have to calibrate at least twice a day which involves checking your blood and entering the data into the sensor, but other than that (though not encouraged by the company/FDA), you really don’t have to check it more than that. I’ve found if I have a quick blood sugar fluctuation, I may have to add another blood sugar to the sensor, but not the ten times a day that I was doing before the sensor.
Long story short, try to focus on your goal, rather than the path that will get you there. You’ve acknowledged you need some help, which is the first step to overcoming this hurdle. I can answer any question you have based on my experiences.
I am so sorry your feeling hopeless. I am semi-newly diagnosed (01/2013 at 29 yrs old) and I can understand the struggles as well. Being on the road for work is challenging not only in the food department but also just being away from normal routines.
It is important to really love your doctors and go to a nutritionist. I switched around a bunch in the beginning until I was comfortable and it has made a WORLD of difference. When I first was diagnosed I set up a reminder on my calendar four times a day to check my blood sugar, made it a reoccurring calendar event so I would get into a routine and never forget to test before I ate.
I have also really found a great source of information and support believe it or not on Reddit. There are various threads on there for diabetics in regards to eating, support, questions and just general conversation.
Keep your head up! Focus on having a long healthy life and everything will come into perspective. We are here for you if you need us.
lots of great advice above so I will only add this - I travel for work and end up living at hotels and eating at restaurants often. I do not know how it is possible but a restaurant can pack 100 grams of carbs into something as benign as a chicken salad wrap. I swear they must put sugar in their chopped meat!
anyway, the key to restaurants for me is low/no carb. sauce on the side, and the hotel treadmill or pool.
Andrea,
Please don’t beat yourself up too much about the weight gain! I know it doesn’t help you mentally to have put on extra pounds but this is a very normal occurrence once your body is working efficiently. Now that you’re on insulin, the food you’re eating is being processed the way your body is supposed to. I gained 30 pounds in the first month after diagnosis, without feeling like I was overeating. But remember, your body was basically ‘starving’ prior to diagnosis.
And on top of a cruddy diagnosis, you had an awful lot heaped on with surgery, and a new job, etc. Please give yourself a gentle hug that you’re likely through the worst of it, and you’re here posting!
You have been an incredible deal but YOU CAN DO THIS! I was diagnosed with Type 1 at she 47 for the first time…Due to an autoimmune event and traveled quite a lot as well with work with out if control sugars.
I finally was placed on an insulin pump which saved my life! I did battle weight gain but now focus on carb control and exercise which makes all the difference!
You have ups and downs but eating healthy and exercises make all the difference! You are NOT ALONE…take the good , the bad and ugly with diabetes but DON’T let it get you down. Find a great endocrinologist and health care team which can help you can make all the difference!
As a nurse who took care of horrific diabetic patients in the hospital yet I was in total denial of my disease until the health care team I found guided me in the right direction. Don’t be afraid to ask for help from your health care team …they will help you! Find the right team for you that works with you and you feel secure!
Andrea, Let me start by saying…I get it. I have had 3 back surgeries over the last four years. The rehab sucks. Travelling with TD1 also sucks. There’s no one to watch your back. Always be prepared. I have a “Murse”(Man Purse) I always carry with me that has all my “Just in case” supplies. Juice boxes, Kit Kats, Glucose Tablets etc… Also I take a Humalog pen in case the pump freaks. That way you have yourself covered in hotel rooms. The weight gain…It happens. Us TD1’s are always hungry it seems. When our bodies say eat, we eat. It’s amazing how much we can pack away and not be full. To help this ask your Endo about Symlin pens. It works to curb your appetite until you get things under control. It’s another shot but well worth it. I dropped the 30 lbs I put on in two months after I started using it. Now my habits have changed and I don’t need it anymore.
I truly feel your hopelessness, ALL OF US DO! It goes with the disease. Also with back problems DO NOT USE STEROIDS! They put me on them before my first surgery and I went from 200 (my normal weight) to 160 in one month. I thought I was dying. You are in a very select group now and us TD!'s are the red-headed stepchildren of Diabetes. Thats why I love this site. Everyone here is in the same boat (well if that boat is a rubber raft with holes, no paddle, and surrounded by sharks) but you have us and we have you.
Hi Andrea! I too read your story all the way through and must admit you are a strong woman! I too am newly diagnosed, just this past May 3rd! Please do not let the weight gain effect your self esteem! Three months before I was diagnosed DKA I was horribly skinny, and going into DKA is the worst thing we could do! Please take your insulin as prescribed; since I’ve been diagnosed, I’ve learned to adjust my insulin units to cover what I eat if I know I’m going to eat a high carb meal! I eat out a lot too so I completely understand the struggle! Stay strong and I’m interested in becoming pen pals or at least keep in touch with fellow twenty and thirty something type ones! (Im 26 btw! )I think we could all use the support and advice of one another! Take care!
I can’t even begin to say THANK YOU enough to everyone for sharing your stories. As cliche as it sounds, just to know I am not alone make me feel so much better. I suppose I feel as though I should be able to “handle it” with a smile on my face and with positivity. Non T1Ds are always saying, well it could be worse, which doesn’t validate my feelings, and then makes me feel guilty. You guys have all given me great advice, and thanks for the encouragement and positive thoughts that I haven’t been able to give myself.
Thank you!!!
