Am I the only one?

Type 1 and LADA
1

I'm still pretty new to this site and to T1 in general. I've scrolled through about 175 pages of the T1 forum pages tonight and for the most part, people seem to be coexisting with T1 pretty well.

I'm really struggling with this. My blood sugar readings aren't bad, but I test 10+ times a day to make sure that I don't go over 180. I have an immense fear of being over 180 due to a severe DKA 6 mos ago where my BG was over 900 that induced a 2 day coma. My eyes were pretty damaged from this episode; what was perfect vision is now a constant haze.

I guess what I'm saying is, I worry about everything with my T1 constantly to the point that it is ruling my life. It's all that I talk about with my friends and family. I especially internalize insurance worries. My daily thoughts go something like:

Insurance worries.
Long term damage worries.
BG worries.
Insurance worries.
Carb counting.
I don't want to be a bother to my family.
Insurance worries.
Why is my vision so bad?
I only have three test strips left..
Insurance worries.
I MUST perfect the C:I ratio.
Can't enjoy food.
Have to lose weight.
Insurance worries.
Insurance worries.
Insurance worries.

I don't want to be that person. I want to learn to live happily with T1. Maybe its because I'm so new to this or because I have no physical support in my area (I'm the only diabetic in my family and among my friends). How do you cope with such an immense weight? Does it bother you? Do you have any suggestions to help me through my anxiety of losing my insurance (which is a real possibility; I'm a college student who gets state assistance insurance which is very unstable as far as longevity), going blind, or eating too many carbs?

I'm so sorry for this rant and being a downer! I'd just like some help! :)

2

Ashley,

I remember when I was diagnosed 28 years ago at age 26. What a shock! But so far no problems.

I have seen many, many stories by Type 1s who have lived with the condition for 30, 40, 50, even 60 years.

Read Dr. Bernstein's Diabetes Solution. He talks about the terrible complications that he had before he hit upon controlling his blood glucose back in the 70s. He says the complications all cleared up after he got his BG under control, and he has lived with Type 1 for 60 years. So you can get better.

The main thing is to watch your BG with frequent monitoring. Wal-Mart sells 50 Relion test strips for $9, while others cost $75. So even if you lose insurance, you can still test frequently.

My advice:

Test your sugars 6-10 times a day and take extra insulin when needed
Exercise
Watch the carbs, which raise BG
Lose extra weight
See your Dr. 4 times a year
See a diabetes educator if you can
Focus on living rather than on letting diabetes be your life. I barely think about it.
Learn all you can about the condition and staying in control through forums like this one.

Best of luck!

3

After DKA it can take time for your body to stabilize. I was not in a coma and had relatively low bg- highest was 363, but I was in the icu for 4 days- my acidosis was severe as were blood gases when I was hospitalized and I was close to coma I would guess even at those lower bg. I had very low potassium- needed infusions. I also suffered a dvt. I had vision problems like you too, it was a total blur close and far after fluids and insulin.. in 3-4 months it improved a lot but it's not back to normal fully and fluctuates with bg ups and downs. I recently went to another retinologist in nyc- she said the retina and macular part are good but my vision will prolly be blurry on and off when I fluctuate. I use reading glasses of different strengths. Have you gone to a retinologist? I would definitely do that to make sure there was no damage there, you need to do that once per year. Don't rely on a normal opthamologist or optometrist. Just find a way to do it, Rely on your family- can they help you with insurance at all? You may be able to go on your parent's insurance depending on your age until you get something else.

What helped me the most was going on a 30g per day diet... I could not stabilize my bg any other way.. I now eat 50g per day. I have eliminated grains completely and any starchy veggies.. I always walk now after my larger meal, this helps keep me stable. I agree Bernstein or as low carb as you can go may help a lot. With lo carb you will probably reduce your insulin and be able to lose weight. On lantus I gained some dka weight loss back and I was worried I would keep gaining from it so I switched to levemir and have lost 6 pounds or more now without trying to.

How many carbs do you eat per day,meal? limiting carbs per meal, lowest in the am, and portion sizes helps a lot. Waiting to eat after your bolus helps stop spikes too, I wait 20 minutes to eat now. You need to do some exercise nearly everyday unless you're stable on that day... walk after meals, whatever it takes, this helps a lot. You also need to get a lot of sleep.. this helps my vision and my stress.. try melatonin and green tea.

drink lots of water.... when you go high, correct, drink water and exercise. I just started on losartan, my cardiologist says it will prevent kidney damage, maybe it will help my eyes too. It has no effect on my bp which is low.

Rely on people here, they can help you a lot. :)

*the physiology of the vision effects, as I have been told and read is that glucose, lots of it got into your lenses and takes time to come out, your bg was super high so it may take longer to normalize. Once glucose gets in, water goes in and it can't come out as long as the glucose stays too high, (fluctuations up a lot prolly effect it, mine gets blurrier when I'm low too), then sodium balances and electrolytes change and cause damage, that can be the start of more serious damage such as retinopathy and cataracts and macular damage.

4

Hi there,

First off, of course you are not the only one who has these worries and struggles. Diabetes has to be of the most anxiety causing illness out there, it's with you all the time and takes constant effort.

From your post it sounds like you are experiencing anxiety, which even without diabetes can be bloody horrible. Have you thought of finding somebody to talk to, or seeking treatment for anxiety. CBT stuff like that?

It might help you see diabetes in a new light and provide you with some long term coping strategies?

Don't worry about things you can't control and work hard to do the best with things that you can control, e.g your blood sugar and lifestyle.

Hate to end on what sounds like a platitude, but hang in there and you'll be in a better place soon :)

5

For those of us diagnosed with diabetes as an adult the event just shatters our world. I felt like I literally died. I saw myself going through the five stages of grief from Elisabeth Kübler-Ross: D'Nial, Anger, Bargaining, Depression and Acceptance. For quite some time, I actually thought that I only had a few years left and I worried about things. With a wife and kids, how would that leave them. Now, some years later, I've attained more acceptance. I can lead a long, happy and healthy life. I worry about insurance as we well. But I also feel much more empowered to do something about it. I know I can just walk right down to Walmart and get basic diabetes supplies that are affordable even without insurance.

And you are right, having diabetes can make you feel like you have to carry more weight on your shoulders. But you have to develop the right perspective to be happy. For each of us, we all deal with various burdens. But we also each have our own joys and things that give us happiness. It is really important that you make your life about you happiness and realizing your potential. There will be setbacks. We all will get old. In the end, I want to feel like all the weight I carry with my diabetes makes me a really strong person and that helps me to actually live a happy, healthy and fulfilling life.

6

Insurance worries are huge too. My wife and I both work for insurance companies so the benefits are there, although the insulin pump and CGM both cost quite a bit. I agree that anything connected with a state would be very nerve-wracking these days. Test strips rear their ugly head once a year when the insurance company demands the doc write a letter of medical necessity explaining why I need so many test strips, and then takes a couple of weeks to "review" it after they get it.

This inspired me to chart it out and arrived at at least a dozen/ day, but there's not really a "venue" in which to have a debate about that as the "science" they hide behind is the medicare number which, of course, is not based on science at all. Pretty much 100% of the people I've talked to at the health insurance company and the pharmaceutical supply organization with which they are affiliated disclaim any ability to affect "the way it is" which makes me want to hit golf balls through the windows of their offices.

Similarly, there doesn't seem to be broad, scientific agreement about eating too many carbs is. Eating a lot less can be very useful to help get BG stable and it is a very popular solution for many folks @ Tu. I have found that I can do ok using lighter carb meals to check my rates and ratios and make adjustments more safely (since there's less insulin involved, any hypos tend to be pretty minor, which is a nice thing...) but then I seem to blow it every weekend eating and drinking more because "IT'S THE WEEKEND!!" but I still do ok. I like Dr. Bernstein's story but his asceticism is way to extreme for my tastes.

My eyes have gotten a lot worse lately too. Every time my rx for lenses has faded, I'm thinking "OMG, I'm going blind, I can't see jack $#!+!" In fact, at a recent eye doc appointment, the doc perhaps insensitively goes "yup, your eyes are shot..." to which I replied "what [TF!!!] do you mean!?" and he said "yup, you need readers" which, while a separate pain in the butt, is better than blind, although I feel like transitioning to readers and bifocals has fried the vision software in my brain and I feel like I can't see anything as sharply as I did a couple of years ago. Then again, I'm 45 and that's sort of par for the course in that cohort, particularly since my job entails staring at a computer for 50 hours/ week on top of online socializing here, FB, etc.

There used to be this guy here who regularly would post "diabetes sucks, it's the worst thing ever threads" to which I'd reply "I'd rather have diabetes than be burnt alive and I think most of us would agree with that". There are still worse things (besides *just* being burnt alive...) but not very many diseases that require the same level of engagement that diabetes does 24-7-365-forever (sorry curists, I'll bet against a cure in my lifetime until I see one, although I will still donate money because it selfishly makes me feel good...). Hanging out in the DOC has been a great way to get rid of pent-up stuff that weighed on me more. I don't even ask that many questions but feel very good trying to find positives in other people's questions and concerns. That doesn't mean that I don't share a lot of them but the talking about things has made me feel less oppressed by it.

7

Acidrock23:

On test strips it is now every 6 months with medicare and repeates every 3 months as supplier trys to downshift one and pretends they did not get your Doctors, scrips, orders, medical history and your 6 months logs.

THe idiots who push this crap should be shot!

8

Ashley - All your worries are very rational responses to your new health status. Give yourself some time -- you are very new to this. T1D is a shock to your self perception. It takes time, sometimes years, to fully adjust to your new self. It's perfectly normal that your new diabetes status looms large in how you see yourself.

You've made a list of the things that worry you. Take one thing at a time and try to do one practical thing that will make that worry easier, make it better.

Pick up The Book of Better. It's written by a person with T1D. It's not long, has lots of humorous graphics, and has a powerful central message: life with diabetes can't be perfect, make it better.

Diabetes is hard but with focus and attention you can learn to live a very good life despite its presence. In fact, as others have said, it can hone certain skills that can be applied to many areas of your life. When you learn your system on how to live well with diabetes you will experience deep satisfaction that you did something hard, well. The kind of satisfaction that does not fade in a day or two. Believe me, you are worth the effort!

Attitude is everything. Don't give up or heap too much pity on yourself. Your attitude will play a huge role on how well you do. Life may select the picture, but you choose the frame.

9

Great post Brian!

Ashley, try and reduce the mountain of concerns you have created to more simple steps. To use a couple of old cliches: The journey of a thousand miles begins with the first step, OR Rome wasn't built in a day.

There is lots of great advice here on TuD and elsewhere on the web.

Cheers,
Mike

10

Ashley, I appreciate your articulate "rant" about the emotional, psychological, and physical worries of diabetes. I think and hope your stress will get better. It takes some time to adjust to the scary realities and grind of diabetes management. I used to bolt awake at night with fearsome thoughts (still do sometimes), but I am mostly accustomed to the "complications" bogeyman. After 8 years, my worries have faded to a somewhat reasonable ball in the back of my mind that I use to motivate myself. There are lots of long-timers here who are living proof that the disease is manageable to "annoying and relentless" vs "devastating complications."

11

Thanks for the support everyone. I don't necessarily feel depressed so much as just incredibly stressed all the time. I'm a perfectionist, so having a disorder that revolves around a bunch of imperfections is definitely challenging to me! I appreciate ALL of your responses and TU has helped me a lot. Just reading other posts have given me some great ideas :)

12

I relate to perfectionism. There's an art to living with a condition that can never be perfected!

13

To be honest, I have not gotten my eyes checked by ANY sort of doctor post DKA. I know this is horrible, but to be honest, I'm afraid. I'm going to talk to a local diabetes clinic this upcoming week to see if they can recommend a good place to start.

My carb intake right now is about 90-120g a day. My nutritionist recommends 175 but that is just waaaaaay too much for me to even handle! I'm slowly cutting them down and want to get to around 90g consistently each day. I barely eat the foods that would make me spike rapidly (white flour, cereals, sweets, etc). I also go to the gym 4-5x a week for about an hour. So I think my nutrition/exercise is fairly solid.

I think my real problem is probably the stress (which definitely affects my sleep). I'm a worry wort :P

Thank you for your suggestions :) This site has been amazing for inspiration and support.

14

Insurance is probably the majority of my stress. Like I said, with mine being so "sketchy" its a constant worry. Also, I wonder how job hunting (and insurance hunting really) will go after I graduate in May 2014. I was really fortunate pre dx regarding my health, so the insurance game is new to me. Not really knowing how insurance worked before hand, then being dx'd with a lifelong condition, and the addition of a new national insurance plan; it can be really overwhelming and confusing! Most of all though, scary.

I really agree that releasing this frustration helps tremendously. I hate that I sound "whiny" because most of the time I'm really silent when I have an issue. T1 seems to affect everyone so differently and that makes it tricky, I guess. At least getting an idea that everyone dealt with these feelings at some point is reassuring that you've all made it through :)

15

That aspect will probably take the most practice and patience to get use to :P

16

I love your list/rant! It reminds me so much of how I felt during the first year after my (T2) diagnosis. There was so much to worry about, so many situations to learn how to handle.

My advice: take a deep breath. Realize that there is a learning curve in controlling your diabetes. It is impossible to master everything at once: meds, testing, portion sizes, finding a heathcare team, establishing a fitness routine, and, yes, financial issues. You may improve your control of just a couple of these areas right now. With time, you'll gain a handle on more of it. I got pretty good control within six months, but I continue to educate myself, try new things every year.

If you have yet to take a diabetes education course, do so soon. I learned alot from a few evenings with a couple CDEs & my diabetic peers. Hang in there!

17

Sounds like you are getting some good advice here. I remember what it was like long ago to be newly diagnosed. Relax and live life girl. Having T1 is not the end of the world. It is kind of like living with a roommate. I think your worries can be put into a positive spin and is just you saying you want to take care of yourself and do the right things. Glad you want to do that.

Every company I have worked for had no issues with me having T1 and covered me completely. By the way, despite having T1 I think I have accomplished about every goal in life I have set out for. Well..except maybe one. The one when I was 12 and wanted Barbara Eden of "I dream of Jeannie" as my GF. :) She is still alive isn't she? Not counting that out just yet. I did snicker a bit at your "cant enjoy food". Man I LOVE food. Just have to be smart about it. Good luck and best to you.

18

Just a quick comment about perfection from the book "Psyching out diabetes": "Don´t try to be perfect. Try for good control, to be sure. But perfection lasts for a moment, and diabetes lasts for a lifetime."
I too am a perfectionist and the only diabetic in my family and friends, but after 38 years of T1D I realize I will never be perfect. I try for good control because I know that in the long run that will help me avoid complications and I feel much better when my blood sugars are stable.

19

I really, REALLY like that quote. Thank you so much! It really clicked for me :)

20

I'm also a pessimist by nature. Which along with perfectionism is a horrible combination with diabetes! I'm learning from these posts that I need to continue my life change, not only with diet and exercise, but with my mind set. Which in all honesty, is going to be so much more challenging. I'll just have to keep reading these posts :)

Thank you!