1 year aniversity

Type 1 and LADA New to Type 1 Diabetes
1

Hi everyone,

I'm new to tudiabetes and from looking at the posts you seem like a wonderful group of people, I'd like some advice/information.

I was diagnosized with Type 1 diabetes a year ago exactly, a week and a half before I turned 30 and 3 days before I was planning to move from Chicago to Madison for grad school. I had quit my job and was waiting to get insurance with grad school so there was all kinds of finanical nightmares, but it was at a point where I felt like things were so exciting and positive and the diabetes took over my life.

My first 6 months of grad school were all about getting used to having diabetes, figuring out shots, understanding and getting used to highs and lows and how my body reacts. In the past I was very athletic, and very high energy, in fact last summer I did a 100mile bike ride on impluse, now everything takes so much planning. I still haven't regained my prior energy levels and get tired much quicker and easier. I lost about 15 pounds before I was diagnosized and I've put all that back on and then some since I was diagnosized, having to eat to exercise and for lows makes it harder and I've had so much else to adjust to my weight can't be my priority right now. But it feels like my body which I used to be so intune with is no longer my own. I had a a1c of 13 when I was diagnosized, my last one was at 6.3.

When I look back over the past year, I'm still feeling so frustrated and overwhelmed. I've made some great friends in grad school, but I feel like no one really understands how isolating it can be to have this condition and no one here knows who I was before diabetes, when I had a higher energy level...the real me. Unlike most of the other students in my program, I don't see school as that big a deal, I think it's important, but it's not the biggest thing in my life. That too can be isolating.

I'm also demoing insulin pumps right now. I love the CGMs and feel much safer exercising with them, but it's only temporary, I'll have to give it back when I return the saline pump. I'm curious how you all dealt with your first year of diabetes and those of you who are pumpers managed the transition from MDI to pumping. Right now, I'm leaning towards the Omnipod and Dexcom sensor if I can get my insurance to cover it. I've found the tubes tend to get tangled in things and the Minimed sensor hasn't been sticking to my skin

I'm moving again in 2 days so I can get a dog and I'm looking forward to it. But it feels like so many major changes in such a short bit of time. A whole new life in a new city and a different career, clinical trails to see if stem cell infusions might extend the honeymoon phase and prevent worsening of the condition, and now moving, and the transition to the pump. I still find myself getting jealous of people who can just eat what they want and only worry about calories or even moreso people who can be atheltic and just go. I feel like it's a little easier than it was right after I was diagnosized, but that after it plateued at about 4 months out, it's been just as hard for the past 8 months.

I'm still so angry, so frustrated, and so tired of dealing with all the changes I have to make to my life and how much of a hinderence this is, and how even people who really care about me don't "get" how difficult it is.

I'd love your support, advice, or recommendations,

Thanks in advance,

Sarah

2

I understand what you are going through. After almost 5 years- I was 45 at diagnosis. I still look back and wish that things were as they were. But in time - you will have a type of acceptance of the situation. Try to focus on the best control that you can achieve and you will feel more normal. I lost 30 pounds at the onset and only gained 5 back. I never had the honeymoon phase - I just went straight in. I have just learned that a day at a time is my best philosophy. The only people who can ever really understand are those likewise afflicted. I find my energy levels are not what they once were but for me - I find I am better if my sugar levels remain about 85. I feel more “normal”. This may not be good for you but you may find something that works for you. Good Luck and enjoy your dog - mine have heard from me all about my frustrations. My dogs help me maintain my sanity and they never criticize - they just love - unconditionally.

3

Oh Sista! Can I get an AMEN?!

Sara, all I have to say is DITTO. I am so right there with you.

I’m at the 6 month mark (T1) and it’s really just sinking in that I have to accept these emotional and physical changes and take things a bit easier and plan a lot more. Two things I am not good at- and at times it still makes me mad. (OK most of the time) I hope that knowing you’re not alone helps…I’m glad you’re here…we “get” you.

You mentioned clinical trails to see if stem cell infusions will help. This is exactly what I’ve been looking for- can you tell me more about it? What/when/where etc?

Reach out anytime…

4

Thanks D.D.

I’m really looking forward to getting the dog, they are really cool! I’m not comfortable with my sugar staying at 85 because I tend to be pretty active and it’s easy for my BS to drop 100 points if I go riding for an hour, especially when I have insulin on board. I try to keep it around 120ish, but I’ll be pumping soon and I’m hope I’ll be more confident having lower sugars when I have a CGM and the ability to adjust basal. For me the honeymoon phase means I take less insulin than I’d be expected to. I take 10 units of lantus and between 8-20 of Humalog depending on the day and activty levels.

5

Girl you know it!

It’s all tough the emotions, phsycial, planning, and chilling out. And having very different priorities than everyone else.

I found trials through trialnet: http://www.diabetestrialnet.org/patientinfo/studies/index.htm and the clinical trials from the government http://clinicaltrials.gov/ To be eligible for the one I did, you need to still be making some amount of insulin and to have been diagnosised within 3-4 months.

Thanks for writing back. Looking forward to getting to everyone better!

Sarah

6

Welcome, Sarah!

Wow, you have been through a lot of changes in a short time. Any one of things would be a lot to handle, let alone all at once.

Understand the anger & frustration & feeling overwhelmed. You’re not alone there. Also understand how isolating diabetes can be. You’re among kindred spirits here.

All the changes are stress inducing. Stress really messes with blood sugar. Once things settle down some for you, it will get easier.

Like you, I was an energetic person before diagnosis. I tire more easily now & don’t have the energy level I did before. Not easy, of course, but doing everything & anything I can to keep BG as level as possible helps. Swings from high/low wipe us out. It’s exhausting keeping on top of BG & the constant vigilance this disease demands. No one can can possibly understand this. Eat & take insulin–sounds simple, but we know it’s far from straightforward & as much an art as it is a science. Despite our best efforts, there are too many variables we can’t control with diabetes.

The loss of spontaneity in my life is hard for me to accept.

I’m on MDI, but there are many experienced pumpers here to offer support. Ask anything you need to know & use the search feature to read past discussions. An amazing wealth of info here. I’ve learned more on TuD than from my doctors.

7

Hi Sarah,
I feel your frustrations darlin’! I’m also type 1, had it for 15 years and I wish I could tell you it gets easier. I battle every damn day, some days are better than others but to be perfectly honest, I’m on the wrong end of the scale when it comes to control. I hate everything about it, the injections, the testing, the lows, blah, blah, blah. Anyway, just know that if you ever feel like throwing in the towel, these guys are brilliant. they have saved my life on more than one occasion. You’re in the right place in terms of support, help and advice. Hang in there, stay well. Debi

8

Sarah, you’re not alone! Congratulations on getting so far so soon! You’ve been doing the right things.
Madison is a great place to get acquainted with diabetes with the medical advice possible there! Love that group of MDs etc etc, and the lake.
Do search on here. There’s a lot on CGM. I can’t more highly praise it.
Adding more Protein to your diet may help you smooth out your BG and help you have more stable energy - without lows to sap energy. I do low carb with a good amount of protein each meal, and I have LOADS of energy. Hope it might help for you.

9

Hey! I just thought of something! Maybe check into the Diabetes Service Dogs- then you’ll have a true partner in crime!
www.heavenscentpaws.com/

10

Hey, Sarah –

Speaking as one who is a long-term diabetic I can tell you that it does get easier. More and more of what you need to do will become habit. There’s no doubt that this is a life-changing diagnosis. Things will never be as they were. At this end of it, I can see that that is not necessarily a bad thing. It requires certain changes in diet and behavior, but all of the changes tend to be better for your overall health. It’s not the bland-food sentence that it used to be. We know so much more about food and our metabolism that you can have just about anything you want in moderation. It’s hard when your life before is so fresh in your mind. It’s going to get easier and easier as time goes on. You are having to learn and absorb a lot right now and that does seem like it’s way too much. The best thing to do is look at what you’ve got to do that’s right in front of you and handle things as best you can. Early on you’re going to be on a learning curve, but the curve will flatten and you will find that one day you’ll be feeling fine and managing your condition without too much stress. With the CGMS technology (I’m on Dexcom 7 Plus and LOVE it) and the pump technology (I’m also on the OmniPod) it makes things a bit easier to control. I did MDI for many, many years. It’s for good, so you’ve got time to get used to it.

11

Hi Sarah!

I can’t tell you much or give advice about T1 and bolusing and such, as I am non-insulin T2, but I can tell you in general, it does get better! You will eventually figure out how to get your energy levels back up to near where they were, or the same. The thing about diabetes is, everyone is different, and everyone’s body reacts differently. It takes a LOT of experimentation and data checking to find out what works for YOU. If you keep the faith and keep “running the marathon” as I call it, you WILL hit a combo of what to eat, when, how much, what meds to give you your complete life back again. You may lose a little spontenaity (sp?) that you had before but gain freedom of spirit knowing you are controling the disease, and it is not controling you!

Oh, and you will find great joy in a dog. I train dogs for fun and run and judge retriever hunt tests all over the deep south. I have been pulled through the darkest of hours by a wet nose and a big dopey grin on a labrador retriever.

God Bless You!
Mark

12

Hi Sarah -

I read your note, as well as the responses, and it seems like you have the right attitude and are in a good place for being only a year into this biz. I was diagnosed about 2 and a half years ago, so it is still somewhat new to me as well, but all I can say is this: 6.3 after a year?? Congratulations! I have been trying to break that 7.0 mark, not quite there, yet…

-dan

13

Hi, Sarah. Welcome to the club that no one wants to join! I think it’s pretty cool that after just one year you’ve already figured out a lot about the ups and downs and perseverance required to have the life you want with diabetes in tow.

The fact that you can reach out to a group like this, even if we’re not local, is HUGE in banishing some of the isolation that comes with D. I lived for over 30 years having barely ever spoken to anyone else about living with diabetes, let alone sharing in and learning from the sarcasm, frustration, humor, support, controversy, etc., etc., that is the diabetes online community.

Your research into pump and cgm is great–temporary basal rates are definitely a huge benefit if you want lots of spontaneity with physical activity.

Keep on keepin’ on. And remember, the best thing you can do (in addition to taking care of yourself) is reaching out to others–so that no one living with diabetes is living alone with diabetes. Best wishes!

14

Hi Sarah,
I am new to all this as well. I’ve only had it for a month and a half but I can’t help but think about how carefree my life was before diabetes. I HATE planning things. I’m very impulsive and really dislike the idea of having to plan exactly how much I will work out and what time of day I will be eating. I dont like having shots and meters and glucose tablets with me all the time. I don’t know anyone else with type 1 diabetes and it makes it that much harder. My friends and family love to claim that they know “plenty of people with diabetes who’s lives are perfectly normal” and its just not true. Anyway I just wanted to let you know that I too am on this site for support from others with diabetes. And i’m from chicago and have visited Madison a ton-my best friend did her undergrad there and i LOVE that campus! I’m also trying to figure out what insulin pump to go on (and if i really do want to go on one) so let me know if you want to talk about that too.
I know the feelings of being frustrated, angry and i really dislike change. One thing that helped for me is kind of cheesy but it helps… i made a list of positive things to look at when i’m having a bad day. One thing I like to remember is that I had a childhood free of diabetes and was able to get through undergrad without it and that is something i am very greatful for.
Anyway, just let me know if there is anything I can do to help.
-Katie

15

Hi Sarah, I’ve been a T1 for 11 months now and although it has gotten easier it really sucks. I hope someday I will be able to stop comparing my life before and after the big D , but I’m not there yet. I’ve never seen another T1 when I’m out and about (poking, testing, or beeping) but they are probably hiding the same way I do. The people on this site are great and I’m learning new things all the time.

16

Sarah,

I have been T1 since 1984. I also have felt completely alone in diabetes, except for the two summers I went to diabetic camp (86 & 87) and since I have joined Tu. It is very lonely. You are totally normal. I work with many T2’s, but no T1’s. They know what to avoid, but don’t understand the math we have to do every time we exercize or eat, or don’t eat. = ) I read an article recently that was talking about how cancer patients feel completely alone if they are not in support groups that if they are cured, they have to relearn how to relate to others. As I was reading the article, I could relate to the loneliness. Not the illness of cancer, so don’t think I am comparing the diagnoses, just the lonliness.

When I need a laugh, I go to youtube and watch some of the videos there. My favorite are probably the My Life as a Pin Cushion clips. When I get too sick of the math, I watch this video. The math video was from the Tudiabetes competition Making Sense of Diabetes initiative.

Some of the favorite books here at TU are “Think Like a Pancreas” and either “Using Insuilin” or “Pumping Insulin” (if you are on a pump). They have both really helped me with my diabetes care.

Welcome, and good job keeping your A1c down to 6.3. Better than most of us.

17

I received my diagnosis one day before you, July 27th. Was also very active leading up to diagnosis and it’s still something I struggle with, figuring out the right kind of nutrition to take with me during training rides, races are taking me longer to figure out, don’t participate in that many. Lately I’m finally feeling like my muscles are close to or about to exceed their capability during riding that they were prior to diagnosis, I had lost enough weight that I feel I had suffered some muscle loss. I’d suggest some weight training, did some this spring and it seemed to help a lot.

Officially I’m type 1, positive for 1 antibody, but I tend to consider my case to be more likely LADA, I’ve been able to control my sugars with 1-2 units with my breakfast along with 500mg of metformin and 5mg of glipizide while having a C-pep of .7. I’m currently waiting for my next endo appointment to see if they feel we should adjust anything, just finished a clinical trial earlier this year for a monoclonal antibody which is supposed to slow down or stop progression in theory.

The hardest part of dealing with this is that I read and looked at so much since being diagnosed to gain an understanding and to better help my control even though I know eventually it’s going to get worse, no matter how good my control has been. I’m going to have to relearn how to control everything all over again once total pancreatic failure occurs and it’s kind of a letdown.

18

Hi everyone,

Thank you all so much for your supportive comments and empathy. It is nice to know I’m not alone in going through this, though I wish no one had to. I’m sorry for being so absent, I just moved and my friend was in town for the past week, I’m finally settled in. I’ve been checking and reading your comments and they all mean a lot to me.

-S