Still Here, Still Type 1, Still Amazed, Still Trying to Explain

I agree with Caprifoglio's (nice to run into you again, BTW!) suggestion to organize. To me, the biggest problem with diabetes is that the standards of care (e.g. "you need to test 4x/ day" [Medicare, my insurer used to send a yearly letter reminding me that was all the test strips I needed...] to "you need to test 7x/ day". I need to test WHEN I NEED TO TEST!!!) are so low they are designed to set us up to fail by making it hard to control the disease. Since the patient is "in charge" if you don't control it, some doctors will be sympathetic and supportive but some will shrug and blame you for screwing up their plan.

My idea is to advocate that BG testing for all types of diabetes is a civil right. Diabetes is a disease uniquely supported by technology and we should have easier access to it. I am spoiled and in a decent place, haven't been out of pocket for strips or anything for a while as I've settled into a rhythm with the procurement process. I guess I've settled into a rhythm with the diabetes in general and things are going ok for me. At the same time I am perhaps more aggressive with BG than many folks. I try to "win" and, to myself, I think I succeed at it pretty well. I am by no means perfect but my BG is usually pretty decent and, if it's not, I'm figuring out a way to get it back. I am aiming at balance rather than "up" or "down".

I have run into Dr. Stephen Ponder first personally and then with a group "The Power Within" on FB, he is a Pediatric Endo who's T1(He also has a bearded lizard named Rango I am also friends with...LOL) who has a great way of showing his own CGM lines and discussing his tactical approaches I haven't seen at a lot of places. I do well but he recently explained his calculation to follow up a rising BG after Mexican food tht had a really great result, basically rebolusing 1/2 the meal dose. It was probably better than my approach of guess how many carbs I forgot to bolus for, bolus again and, often, run low afterwards...oh well, I don't need to gain 2 lbs eating tacos anyway. The general spirit of the conversations we've had there (ok, a lot of times, it's him and me, maybe it can grow though?) reminds me of the Flatliner's Club here before it got as moribund as it has been lately.

I think the place to approach the problem is with the AMA who establish the low standards. Many doctors recognize that people with diabetes can do much better with more testing, including CGMs, which allow more sophisticated approaches to insulin management. I think that staying on top of your BG is equally important for T2 which, in many ways, is a more challenging disease. I will certainly watch for initiatives along these lines.

Then again, maybe the way to approach it is through a class-action suit. If we read all of the emails between insurers, medicare and doctors, particularly any doctor whose level of corruption compels him to sign a "4x/ day" letter, I'm sure we might be able to find some corruption that would give us some leverage. I guess the problem with that would be that if we lost, we'd LOSE what little leverage we have?

Dear Scott, I'm sure that Muragaki meant the line about Type 2 being anyone's "fault" sarcastically. No one here would say that in a serious way.

And thanks for sharing the difficulties you faced with your PCP when diagnosed as a Type 2. So frustrating to have your excellent self-care and documentation ignored! I hope that you have a better doctor now.

Best wishes,

marty1492

Indeed, marty... At least one unintended consequence with respect to online/social media ubiquity is absence of tone, and even careful ordering of talking points and punctuation cannot replace it.

In fact, in terms of organizing and activating, it will require that ALL of us work cooperatively -- not as factions of what really should be an entire community.

WHO'S IN??

Sorry to sound like the proverbial broken record, but Manny expressed this much better than I ever could:

Manny's Blog

He is referring mainly to the T1/T2 division, but his conclusion (and fundamental point) is the need for us to speak together with one voice rather than working against each other at cross purposes if we are to change the world's thinking about issues that affect us profoundly.

I'm in.

Super_sally - each person's body responds to diabetes differently, as you know. I am under the care of 5 different doctors each specializing in different things. I go back and forth between them and we analyze what is going on with me together. I have been through many different tests, medications, and therapies. There is no silver bullet. I have a condition and it is complicated and that is that. I am not going to put myself under the illusion that everything's going to get better - it's really a matter of going with the flow and managing things so they don't get worse. My doctors are excellent but in order for us to work together I have to tell them what is going on - they are not in my body. The fact of the matter is, I have a chronic condition and it has messed up my metabolism and that is not something that can be cured. Period.

Don't worry - I don't feel bad. I just want to live my truth, as it exists, and not some stressful illusion. This is important to me, or I'm going to be jumping off a cliff.

Hello acidrock23 - good to communicate again!

I think the main point I'm driving home here is that we need to be recognized as battling a serious condition, one that is self-monitored, and is completely based on the biological makeup of the individual - there is no person who handles this exactly the same as the next, and therefore beyond the necessary baseline generalizations, it all falls apart pretty neatly.

None of us can spend the rest of our lives in a hospital to determine EXACTLY WHAT IS GOING ON at any given moment as our bodies change over time. And so we struggle with the therapy we have, the mentality we need to bolster to deal with all of this which is HEAVY. Too often the perspective of this disease is viewed SO very narrowly - OH, your bg numbers are great! Go on, live like a normal person! UM, NO. It does not work like that, and to think like that is to completely underestimate what exactly you are going through at any given time during your lifetime. This is the same with any disability. Doctors are there to help us manage. But the attitude of society at large is so off because this condition is invisible. You do not get taken seriously unless you PURPOSELY DON'T take care of your health. (btw don't mind my caps, they are for emphasis I am not feeling angry or shouting at the computer screen)

So... the invisibility, particularly when you are just managing - as Jen said above, no one knows how many times you saved yourself from a bad situation because you just deal with it unless it catches you off guard - is a detriment, it is misleading to others who do not have the disease, and it puts an extra layer of stress on those that do to explain how well they are hiding what they are going through, and that it is NOT in their heads.

See where I am going with this? How do you explain this condition to people who don't have it, don't see it? How do you advocate very, very clearly so that the points get driven home and people take it seriously?

Yep, like Scott I don’t fit neatly into either box, my endo thinks I’m gradual onset T1 but keeps throwing different oral meds at me, ugh:(

I just got off the phone with my gastroenterologists nurse who said the doctor wanted me to come to the town over the mountain for another test to make sure the previous test (aka ordeal) missed something, though he doubts it did. I said thank you kindly but I'm burned out on going over that darn mountain and doing medical stuff as I've been doing various things nearly every week for a couple months. She didn't get it and I know how it sounded.

I'm 65, work part time and struggle to keep my life from being all about medical stuff. I don't have any life threatening illnesses, nor ones that cause me significant illness or suffering and I'm very grateful for that. It could be worse. I'm also grateful that I can still teach which I enjoy and am good at. I'm grateful for having a relatively stress-free life living somewhere incredibly beautiful. Yes, I get very very tired sometimes. Type 1 is 24/7 and anything else just needs to get added on top. It gets old. But my goal actually IS to live as normal a life as possible. I continually set the boundaries on "medical stuff" and add in "fun stuff and stuff I care about" just so my life doesn't become nothing but struggle. Do people understand? Nope, hardly. The people who matter in my life ask questions and I explain to the degree they are interested. But my support system for my Type 1 and related struggles is here and in my realtime Type 1 Women's Group which, unfortunately is too far away now. I highly recommend forming a support network of people who DO get it because they live it. Do the general public understand? Nope, but I don't really care.

Hi JEN!!! It's been a long time. Welcome back!!!! :)

Having read through this thread I understan and agree with pretty much all that has been said (although being a male there are ssome obvious experience gaps). The main issue of others not understanding though I think deserves a little more attention. I agree it can be a pain in so many ways. I agree, to an extent, I do not care what othhers may believe about me or what I do(this was true before D). But, I have to remember how I respondedddd to PWD or other conditions BEFORE I had one of my own. Now I am embarrassed at my reaction and responses. I was uninformed and ignorant and therefore unable to even be truly empathetic. Reemembering this helps me to keep aa better perspective on this issue.

The only people I do not give this benefit of ignorance to are medical professionals. In the last two years I have been in the hospittal five times. Three outpatient eye surgeries, one ER trip for a serious low with siezures and a five day stay last October for a broken hip. There was only one person at the first vitrectomy who had a good unddderstandiing. His paartner is T1. Thankfully he told everyone to do what I said in regards to my D. Telling them I knew more about it than all of them would ever know. Other than that I found that the vast majority of them knew only slightly more about D than my new kitten(not being mean here, just stating fact). In my five day stay I had the displeasure of having to explain things over and over because each new shift on each new day brougjht new and equally ignorant professionals in to "help" me. "I see you are type one diabetiic. Do you use insulin? Or are you on oral med?" Another favorite of mine was "Your BG is 179. That's great!" Or even better, "Oh, you can't have any insulin unless you are over 200." Needless to say my wife brought my Humolog in and I did it myself. Finally after two days of me educating the nurses AND doctors the Endo on staff threw up his hands and said "You're in charge." Thank God. Thing is, my ER visit was a couple months later and they would not release me until I had a reading over 200! I normally run 70 to 112 or so. It took a week to get things back to normal.

I see the medical community as the real problem in lack of knowledge about D. It's too complex too explain in a sound bite. They don't understand it themselves And they do not give complete or accurate information to patients. Sure there are those that do it right, but not many. I try to educate as much as I can. I've gotten pretty good at recognizinng when a person goes into a coma.

Just stumbled onto this discussion, and I feel oddly sympathetic to both sides of it. I've had T1 for just shy of 30 years, so like the dx'ed-as-kids contingent its been a fact of life so long that I don't think of myself as "unhealthy"; it's just part of who I am. I've lived through three major evolutions in the treatment, from the old NPH/R horror, to the incredibly liberating switch to Lantus/Novolog ("It's 1:30 p.m., and I haven't eaten yet, and I'm NOT IN A COMA!!!") and just this last year switching to a pump. Through all that, the idea of an actual cure is, well, so remote it's just not something I waste time thinking about.

On the other hand I was diagnosed in my 20s, so I guess technically LADA, though that wasn't a term back then--at least nobody ever mentioned it to me. It was just "juvenile" (my dissertation adviser at the time, a Brit, wryly remarked "it must be even more annoying to have the juvenile kind"). Anyway, I was old enough to grasp all the seriousness of syringes and ■■■■-strips and all the relatively crude paraphernalia we had back then without totally freaking out, but young enough that it wasn't quite so hard to deal with the lifestyle disruptions as it is for people in middle age .

So despite how long I've had it I think I can grasp how disorienting it would be to have this particular Godzilla come stomping into your life in your 40s. I imagine this is aggravated by the fact that it's Type 1 you're dealing with, not Type 2. There's SO much more media attention around the latter that I've generally found people take "diabetes" as synonymous with Type 2, and especially if you're older that's going to govern perceptions about what you're dealing with. So the more acute aspects of Type 1, dealing with injections, blood-sugar crashes and whatnot aren't going to figure into their picture. Because I'm in my 50s I get quite a bit of that myself. "Oh you just go on a diet and take some pills for that don't you?" Having to explain this stuff when people just don't get it--or worse, when they THINK they get it, but are wrong--is no fun. I've even run into conflicts at the pharmacy over these mistaken assumptions ("You don't understand: I NEED those test strips NOW because I can't adjust my novo dose without 'em and it's DANGEROUS for me not to know if I'm crashing!" "Oh, you're Type 1??? Oops, sorry"). I'm about 13 years ahead of you age-wise and I'd hate to think what a pain in the ■■■ it would be having to suddenly learn how to deal with it now.

I know I've gone on but I think I hear where you're coming from and I'm totally sympathetic. It's not easy to have either type and there's no good age to be diagnosed with it, but your situation has its own unique aspects. I wouldn't presume to give you any advice, just thought it might be useful to share my own perspective from a long-termer. At least this is a pretty good place to vent about it, and I hope doing so helps you feel less isolated--ohmigod do I have my peeves about it, and so do we all--and maybe a bit more optimistic about the prospects for getting along with this bad houseguest of a condition that's moved in with you for good.

Wow I hear you - that's the MOST frustrating thing of all, medical professionals not getting it. I remember reading many, many posts here on TuD about people needing to change their doctors till they found ones that got it - surprisingly, even among specialists in D, not easy to find! This is why I left one of my doctors and sought out three more doctors to replace him. When I was healthy he was fine. But once I got sick - forget it - whoooosshhh, right over his head. One lesson I learned - medicine is a service you are paying for, and DEARLY as a patient of a chronic condition - NEVER be afraid to ask questions, challenge and find a doctor who has a scientist's mind left in him/her and who is not sitting on their laurels. This is how I prefaced all my first visits with my three new doctors - that my situation is complicated and I'm looking for a medical professional who is willing to use their scientific mind, that I'd be a communicative patient and we'll work together on my situation. This is imperative when you have a disorder that is not fully understood in any part of the medical world.

BTW, Randy - your sense of humor, dry and sharp-witted, is much appreciated here. <3

Thanks so much for this, Dr.BB - yes, you understand where I am coming from and you were not going on - I think you made many relevant points and I truly appreciate what you said. Dead on. And yes, this is the only place I really feel where I can come and be understood - at least at some point along the way. Although I've been just trying to understand what it feels like to live with this condition, listening to my body and how being diabetic affects my chemistry in particular, and being away from here helped me to focus on that for a while, I feel now that understanding that better will make me both a better contributor here and better at supporting others psychologically at least, in a more meaningful and real way. To be able to get beyond the shock of having it, to wanting to work with others who have it - at the very least sympathize, and on an even larger scale, bring attention to what we experience in a much more public way, is a big step from the personal sphere. But I think it's important to take it right now - 'cause I ain't getting any younger, I've got nothing to lose and everything to gain.

Terri!!!! Thank youuuuu!!! Glad to be back! <3

Similar story for me when I was in for major abdominal surgery. First thing in the a.m., day after surgery, they come to me with the accursed vials of NPH and R like this was 1979. "NOOOO!!! That's NOT the regime I'm on. Just give me my lantus & novo pens and let me take care of it myself" Nope, you're not allowed to do that, we have to. All manner of pushback about it and negotiating to get the right meds. This is at Beth Israel/Deaconess in Boston, affiliated with Joslin Clinic and supposedly up on this stuff. Sheesh.

I actually disagree, DrBB about things like this being harder to deal with in middle age. For me, when I was diagnosed at 58 I felt I had a degree of calm and acceptance to deal with it all gracefully. If I'd been disgnosed in my teens or twenties I would NOT have done well at all! It didn't hurt either that I was diagnosed a month before retirement as only working part time I have a lot more leeway on doing all the things we all need to do. I have nothing but awe for young people who deal with it on top of full time work, careers, school, families, etc. But perhaps this is just me; for me I just have a lot more casual attitude to things today because I've been through so much I know I can handle anything. I didn't know that when I was 20. But then we are all different; perhaps for some life gets harder not easier.

Well that's the thing of it - I had my kids starting at 36. They are now 7 1/2 and 10. My husband and I both work. We have no family here whatsoever to lean on, or friends who can really sub as family (you know those are a rare breed). By the time I was diagnosed, I had had gestational diabetes through two pregnancies. I knew how to take care of my diet, and test my sugar. I picked up insulin injections easily. And then perimenopause set in. Which I am still going through, and which gets no easier. The symptoms are hard, and I can't take a lot of medication because everything is delicately balanced. This includes pain medication. What works for others does not work for me. I'm in the busiest time of my life. The least I could get from people, including medical professionals, is understanding that I am not LYING about my symptoms, or overplaying them, or trying to get away with something. And ACCEPTANCE that I am not superhuman and cannot manage this load without eventually either going crazy or committing suicide, the latter of which I won't do because I want to be here for as long as possible for my children - and that is THE major deterrent right now.

Yes indeed, there is no way to paint diabetes with the same brush, a broad brush, on every person.

And by the way, it was only recently that I realized why people in a lot of pain, physical, psychological or both, take their own lives. I can see it. People get to that point. No one really knows another's hell.

It comes down to respecting each person and giving them the benefit of the doubt, instead of trying to box them into some pre-conceived and ill-conceived notion of what YOU think they are all about. Every person in the world, no matter who they are, deserves this.

That is indeed true! Menopause is another thing I got out of the way before my D diagnosis! I wish you were in the Bay Area so I could turn you on to the most amazing Type 1 Women's Group: Women from their 20s to their 70s, kids, careers, D advocates, (waving at Melitta) and all around incredible women! They are my heroines!

Wish I were there too, Zoe...

If you know of any connections in LA, please do pass on...