[Kylyssa]

I've already been diagnosed with one life-long killer disease, lupus. I've also been diagnosed with fibromyalgia, Hashimoto's thyroiditis, epilepsy, and vitamin D deficiency. With all this in mind, you'd think a diabetes diagnosis would be no big deal to me. What's one more thing that could kill me when I already have an illness likely to be the end of me eventually?

But it's different. The emotional baggage attached to diabetes is so different. For me, that added baggage has to do with personal responsibility and self-esteem. With lupus, there's no societal perception that I've been a nasty, lazy glutton and brought it on myself. I don't have to practice perfect self-control to treat my lupus. I don't have to purposely and through willpower alone give up things I enjoy to try to survive lupus longer. My doctor hasn't shamed me for having lupus and lupus won't require me to use higher math before I know if I can eat a grape or not.

I wouldn't be honest if I said that the diabetes diagnosis isn't hitting me much, much harder. I'm still reeling, actually. I'm in the anger phase of grief, I guess. My problem with the anger is that my usual reaction to anger is to turn it inward and this blow to my emotions is no exception. I've been scrabbling around trying to figure out how I can do the low-carb diet in a way that is acceptable to me. I've even been trying to make calculations as to whether or not lupus will likely kill me before the diabetes- in which case, I might honestly just say screw it and not bother aggressively treating it.

I don't even know what I can eat or who I should listen to. I haven't been well enough to go grocery shopping and I'm broke until the third or fourth anyway. I've pretty much been eating canned tuna and sardines with what frozen, non-starchy vegetables I can rustle up. I'm seriously craving avocado. I hope it's something I can eat. Wow, I think my pain meds just kicked in because I'm not making sense anymore. They are hitting me harder after a brief time of not having them stay down. Anyway, I'm obviously feeling depressed about all this. How do you folks cope with those feelings?

 

[smorgan]

I've already been diagnosed with one life-long killer disease, lupus. I've also been diagnosed with fibromyalgia, Hashimoto's thyroiditis, epilepsy, and vitamin D deficiency. With all this in mind, you'd think a diabetes diagnosis would be no big deal to me. What's one more thing that could kill me when I already have an illness likely to be the end of me eventually?

But it's different. The emotional baggage attached to diabetes is so different. For me, that added baggage has to do with personal responsibility and self-esteem. With lupus, there's no societal perception that I've been a nasty, lazy glutton and brought it on myself. I don't have to practice perfect self-control to treat my lupus. I don't have to purposely and through willpower alone give up things I enjoy to try to survive lupus longer. My doctor hasn't shamed me for having lupus and lupus won't require me to use higher math before I know if I can eat a grape or not.

I wouldn't be honest if I said that the diabetes diagnosis isn't hitting me much, much harder. I'm still reeling, actually. I'm in the anger phase of grief, I guess. My problem with the anger is that my usual reaction to anger is to turn it inward and this blow to my emotions is no exception. I've been scrabbling around trying to figure out how I can do the low-carb diet in a way that is acceptable to me. I've even been trying to make calculations as to whether or not lupus will likely kill me before the diabetes- in which case, I might honestly just say screw it and not bother aggressively treating it.

I don't even know what I can eat or who I should listen to. I haven't been well enough to go grocery shopping and I'm broke until the third or fourth anyway. I've pretty much been eating canned tuna and sardines with what frozen, non-starchy vegetables I can rustle up. I'm seriously craving avocado. I hope it's something I can eat. Wow, I think my pain meds just kicked in because I'm not making sense anymore. They are hitting me harder after a brief time of not having them stay down. Anyway, I'm obviously feeling depressed about all this. How do you folks cope with those feelings?

Eating is one way. There are so many great things I can eat without worry. I always enjoyed eating and I still do. Many of them are economical, too. (Alas, not avocados, though.) Here's some:

- Cheeses - make sure the fat grams are much more than the protein
- Avodacos - worth the price
- Eggs
- Butter, butter and more butter
- Coconut oil (yes, the faddish "virgin" one is expensive, but the processed on can be found MUCH cheaper e.g., Indian groceries and is nutritionally similar.
- Ribs or "boneless short-rib" meat - one of the cheapest cuts
- Green vegetables - eat FREELY canned, frozen or fresh with LOTS of butter
- Heavy cream - in coffee, spread on toast, in scrambled eggs, everywhere.
- Peanut butter - great on celery
- Mixed nuts - OK a little expensive, but you have to eat them in moderation, anyway
- Smokehouse almonds - wow, I love them!
- Kalamata olives

Enjoy!

 

[moon]

I was away the last few days on a mini-vacation in a small town down along the coast that's known to be somewhat of an artist's community.

My friend and I wandered into a studio, a place somewhat different in that there were no prices, no tags, no instructions, only shortly an appearance by the artist Riccardo who engaged with a flourish and passion that made it easy to pinpoint his Italian/Spanish heritage.

He spoke of his work with passion, told what various pieces represented, and said that his art is meant to be touched – hands on, please. Then he showed us as example a painting, an abstract relief of a woman, quite lovely, and how a blind girl had come in and he had her feel the painting and she was moved because so much art is out of her grasp. Well, I nearly lost it, but controlled myself to only teary-eyed, which he obviously noticed. As explanation I told him I was en route to losing my sight and he engaged, oh did he. He pointed to a sculpture and asked us to guess at the material with our eyes (marble, plaster, whatever) and then had us go touch it. It was recognizable by feel, marble clearly. He talked then pointedly about our hands, how much we can connect with them, see with them, learn with them. He said when my sight is gone he will create art for me. He talked about life, how the vision boat is going to sail for me, I have no choice in that, I must be on it. But I did have a choice in how I take the journey. I can’t recreate his words, but he spoke eloquently and with such force about life, asking forgiveness if he was being lecturing, which he wasn’t – he was very caring and inspirational and touched me so deeply I wish I had a way to communicate his gift. He gave me a long lingering bear hug, and after we left I was in tears: moved, scared, fearless, all of that and more.

I too have many challenges beyond diabetes and vision even, but Riccardo is right. How we embrace and live our lives is about us, how we take our own personal journey. It’s certainly not about what a doctor or anyone else thinks of us, and we can’t allow those imagined perceptions to invade or corrupt our sense of self. The life we have to live is too big, too important, to permit it.

I wish everyone could meet Riccardo.

 

[foxl]

Hey Kylyssa: If I have not mentioned this to you before, Hashimoto's is a risk factor for TYPE ONE Diabetes. SO is Vitamin D deficiency!

Get GAD-65 antibody testing ...

 

[gphx]

My mother, who also lives in Michigan, was dxed years back with fibro and lupus. Recently she said her doctor has been warning her about high bgs and, despite her denial, I think she's probably already D like the rest of us.

Her response to all this at age 67 was to rent a building and start a new business.

Not saying your disease or life will be like that but we shouldn't assume it can't be either. Be careful what you dream because dreams come true.

 

[Jen]

Kylyssa - I know I posted this elsewhere, and Linda just mentioned it too....you already have one autoimmune condition. Please have your doctor revisit your T2 diagnosis. It seems to me and probably others that you're a candidate for T1 and have been misdiagnosed.

One comment in your original post here really stood out to me: "My doctor hasn't shamed me for having lupus....". Has your doctor shamed you about diabetes???? I think there is a big idiocy factor for a physician to do that in any case, but specifically in your case since your immune system is already compromised. Don't accept that from the big lunk. Many adults who present with diabetes are diagnosed T2 based on age alone. Further, not all T1s test positive for antibodies. You really may need to find a more aware physician.

Jen

 

[Kylyssa]

I have little hope of getting this particular doctor to revisit the diagnosis. He felt that looking things up, talking to a diabetes educator nurse, testing my own blood sugar, and seeking help other than him was unhealthy so I'd be shocked if any such request would be honored.

I'm likely going to start another thread (or look for an existing one) about how to get a doctor to listen because I really need some help with that. I've also been diagnosed with Asperger's so that may be part of my communication issue. Written communication is usually so much easier because, while people sometimes do assign subtext where there is no subtext, at least they aren't deciding what you are saying mainly based on your body language or lack thereof instead of based on the actual words you are saying.

 

[Shalynne]

Asperger's would definitely complicate face-to-face communication. But even those of us who (sort of believe we) are neurotypical have our experiences to share. Both sides in a conversation need to engage. All too often, the professional refuses to do her/his part, no matter what level of skill we possess.

No doc should discourage you from finding your own answers ... especially with diabetes, which demands such an intense degree of personal management. I suspect that any impairment is not on your end.

Changing docs can be a major hassle, but may also be the only solution.

For me, the need to do calculations before every meal/snack seemed not only unfair (which it is), but impossible (which it isn't, though it's still difficult). I'm math-challenged; I get there eventually, but lightning-fast calculations are beyond me. I had to teach my husband not to surprise me with treats; they only cause stress. So I totally hear you on that score!

Worse, no one can give us a Good v. Bad Foods list we can all live by. We're all different. Some folks happily gobble down foods I can barely look at, and vice-versa. The best we can do is to look at the suggestions, and chose a reasonable path (or combine a few). But that's just for starters.

(Smorgan's list, above, is terrific! But, personally, I've got to be wary of nuts and peanut butter. No one's list works 100% for everybody.)

After we choose our path(s), we must tweak it. Best way to figure out the tweaks is to "eat to our meter," which means testing each "new food," preferably at 1-hour and 2-hour intervals, to see if it spikes us.

(If everything spikes me, I know it's time for a meds tweak.)

It does get easier, with time and practice.

 

[moon]

how to get a doctor to listen because I really need some help with that. I've also been diagnosed with Asperger's so that may be part of my communication issue.

I might consider, the next time you see him, giving him a prepared statement at the outset, telling him you need a partner in your healthcare, and that sometimes you feel as though you are not being heard. You could bring up the Asperger's as you did with us, being completely honest how you feel.

Doing this as soon as you sit down, saying there's something important you need to communicate, should highlight and underscore it for him. And being a prepared statement, you wouldn't have to rely on on-the-fly communication.

I did something like this with my endo on the second visit because he wasn't hearing me on why I wanted to test more than 1x/day. I looked him in the eye, made my need for a healthcare partner - not just a doc - paramount, and it worked in my case. He heard and wrote a script for 4x/day. It improved our relationship overall.

 

[optimist]

When I was diagnosed type 1 last year, I was a bit chocked how my doctor and family reacted.
They looked like I would burst in tears or get suicidal or something. For me, I knew something was very wrong in me, and it felt like a relief to finally learn what it was.
I already have several diseases and I have a lot of trouble with them, since my body thinks the medicin is poison, and wont accept it.
The diabetes didn`t scare me at all in the beginning. For me it is much harder to accept the nerves in my eyes dies and nobody can tell me if I`m going to be totally blind or if it maybe will stop.
After living with the diabetes a couple of months I started to read about how other people live with this disease. I read several books and articles and started to re-think how food can work in me and my BG. I started to live LCHF.
It took me months to be sure that how I now eat and live is not only the best way for my BG, but it also makes me able to enjoy life fully and the diabetes doesn`t stop me at all. I live my life the best way I can. My diseases will never go away, but I truly believe that I still can decides how I want my life to be.

 

[Jen]

I have little hope of getting this particular doctor to revisit the diagnosis. He felt that looking things up, talking to a diabetes educator nurse, testing my own blood sugar, and seeking help other than him was unhealthy so I'd be shocked if any such request would be honored.

Ummmm....this is a big clanging red flag for me. I would not spend one more minute thinking about how to appease this clown, and would be actively searching for a replacement. Your time and future are worth so much more than the minimal amount of consideration you're likely to find with Dr. Demented.

Jen

 

[Shalynne]

Originally Posted by Kylyssa
I have little hope of getting this particular doctor to revisit the diagnosis. He felt that looking things up, talking to a diabetes educator nurse, testing my own blood sugar, and seeking help other than him was unhealthy so I'd be shocked if any such request would be honored.


This was why I suggested a change of docs, rather than a new talking strategy.

Although it would be a good thing to develop a strategy for use with the next doc. (I try to do that, myself.)