The long, long journey

[Eastwood]

In the past three years, or so, there has been a major shift in how I deal with diabetes – emotionally, mentally and physically. It went in this order – getting married, thinking about having kids, worrying about all the stress that I can cause my family by being diabetic, doing a lot of research, stumbling across Reality Check and Islet.org, airing some long held anger and shame about being a diabetic (anonymously), coming to a place where I felt I was able to try new approaches to management, booking in to see an endo for the first time in ten years or so, discussing the idea of a pump, meeting other people with diabetes through reality check ( a big step), getting a pump, dealing with some residual long-held anger and shame about being a diabetic, more research, stumbling across the Bernstein diet, making big changes in the food that I eat, getting excited about a level of control that I never thought was possible only a few months ago.

If I put having a brilliant wife, a great family etc aside for a moment, I’d rate these three things as the most important factors in getting me to this point –

• Reality Check and Islet.org (in helping me come out of my self-imposed, shame-filled isolation),
• Insulin Pump (in helping me get a tighter level of control)
• Bernstein diet (in helping me get a level of control I didn’t think was possible).

I have just been thinking about it recently and considering how my life has improved so dramatically in the past year and thought I’d post my thoughts in the Beta Cell (I think this is a topic for experienced D’s.) Diabetes will always be here, there’ll always be ups and downs, but without the angst, the mental torture, the daily fear that has been there in the past.

There may possibly be some people who were diagnosed and waltzed comfortably into the world as a diabetic, but I’d imagine that most people took a certain number of steps to get to a place where they feel some level of control (on all levels). It took me 16 years. Being diagnosed as a teenager may have led me to feel more anger and shame than I would have if I’d been a bit older (or even younger?) but even without that, I’d assume there’d be some time needed for most people. Am I right? I’d be interested to hear other people’s experiences (if anyone can be stuffed.)

[tatus]

good post Eastwood! I'm new to RC - as in just arrived today - and I feel like I've found a home. I really related to what you describe as the "long journey". I've been d1 for 28years and am 35yrs old now. It has only been in the last 2-3 years that I've come to some place of (for want of a better word) 'willingness' in regards to integrating d1 into my life and resulting physical, mental, & emotional wellness with d1.

I could rattle on for ages but just wanted to say that it was so good to read that someone else had been avoiding seeing an endo for years. I don't know if I avoided them out of feeling ashamed but rather that I tried to hide from the diabetes - almost like pretend I didn't have it. I looked after the bare minimal and pretended that I knew what I was doing and how I was doing. I didn't. I feel some regret about the damage that may have been caused from that neglect - but I can't afford to beat myself up for it either.

Now I love looking after myself. I love how eating 'right' (again - for want of a better word), and monitoring my BGLs, and trying to exercise, and seeing an endo gives me a sense of power in living with d1. I can't change that I have it but at least I'm not fighting it anymore. The more tools the better. Bring it on I say!

And on an philosophical/theoretical level - I reckon that it's probably 'common' in 'the' human condition that acceptance takes a long time. And that in fact some people don't ever find it. I'm not sure why this is so.... but sure am glad i have. good for you hey

[Mel]

Great post Eastwood, and I relate to it, I lived with the angst and fear for a really long time and RC has been invaluable in helping me overcome that, just knowing that others shared my experience somehow extinguished a lot of the feelings of failure and inadequacy I had for not being able to have sugars between 4 and 8 all the time. This "failure" left me discouraged and unmotivated to even try much of the time, but feeling empowered to take on diabetes and the medical system has been such a revelation.

I think that people diagnosed before adulthood have different issues from those diagnosed as adults, perhaps it has something to do with internalising our condition as part of our notion of self. I see far more ds diagnosed as adults making a big song and dance about their condition eg telling first aid people and having a hypo kit on the wall at work and insisting on special meals etc whereas most people who have had it since they were kids tend to keep it more to themselves and adjust their activities to suit the external environment rather than the other way around.

that it was so good to read that someone else had been avoiding seeing an endo for years

Absolutely, that is incredibly common (one study showed 25% of 18-25yo type 1s hadn't seen a Dr in over 12 months), it is one of my hobby horses that the medical system should change its ways because so many type 1 ds drop out because there is no value in endo visits etc, I think it may also be that one drops out to protect one's mental health!

[Phil]

I think it may also be that one drops out to protect one's mental health!

I have no doubt that this was the case for me. Seemed any time you did see anyone it was to blame you for something else.

I really enjoyed reading your post Eastwood. I also feel that I have been on a long journey here with most of it in the wrong direction. It is interesting to speculate on what changes internally to help you become more accepting of diabetes. I was also diagnosed as a teen and never spoke to anyone of the separation I felt and the fact that I was a diabetic at all. I was very ashamed that I was somehow inferior. Once I was free from home this just became worse as I ignored it completely. Tried a couple of times to get back on the doctor train but was rudely shoved off at each attempt.

I really dont know what changed my way of thinking but suspect it was the total litany of problems I had that I could no longer ignore. I also had 3 kids that relied on me as well and I couldn't just give up as I was currently doing. I was lucky enough to find a DE whom I respected and liked and who had an understanding of me (He is T1 and I think this was the tipping point). I like my new endo and in fact my whole medical team.

My 3 important factors would probably be:
nurse educator/endo support
pump
rc

First one got me thinking in the right directions. Second showed me that I can have some control of the beast and third simply showed me I wasn't alone.

I now actually open up to people about what is happening. My wife now has a good understanding of my problems and the support I get there is also a major factor. This would not have happened if I hadn't changed my understanding of where I was and what I was doing.

Mel, I agree with you totally. I have far too many problems that I just shouldn't and going without any real medical support for 15-20 yrs is a very good reason for it. This is one area that does need investigating.

[Jen (nli)]

I’d imagine that most people took a certain number of steps to get to a place where they feel some level of control (on all levels).

Yep - 12 years. The last 4 have been a lot better.

My 3 important factors would probably be: nurse educator/endo support
pump, rc

First one got me thinking in the right directions. Second showed me that I can have some control of the beast and third simply showed me I wasn't alone.

Much the same as Phil - I think having support from a few different areas helped me realise (slowly) that it was acceptable to have this condition. For me, that support came from my partner, my endo and here. All three areas offered completely different types of support, but all three types have proven to be invaluable.

[tink]

I think its interesting too, how some people seem to get lots of support from whatever's available (eg. DE, doctor, family...) and others don't. I don't know about anyone else, but everyone around me just seemed to think I coped with the Big D fine from the start. I think this was partly based on the fact that I was studying medicine at uni at the time I was diagnosed - so everyone thought it would be easy for me to inject myself and do all the right stuff. People still think this now I'm a doctor. I doubt anyone would suspect that like several others I wouldn't check my BSLs and didn't see an endo for years. (I remember seeing an endo with a HBA1c over 10, and he looked at me as if he'd never seen anyone with a high reading before).

I can say that I've also had a complete revolutionary turn around in the last 12 months. For me, I needed a reason to get more inspired to manage my DM, and that's wanting to have a family. I found an amazing endo who is really involved in my care, acknowledges that I'm good at self-management but need direction. I turned up for the "I want to have a child" discussion with my partner and we left feeling like we had the complete plan. I got the pump and with it came the most amazing DE - the preceding 15 years I'd never had a DE!

I'm not sure I completely own my D yet, even after all this. I still feel scared that in my workplace people will treat me differently if they knew.. I think that in general doctors (non-endo doctors) are about the most ignorant group in understanding what its like living with a chronic illness.

I come in and out of RC and am filled with inspiration and envy by some of the posts.

[abs]

care to share your Endo's name... I'm thinking about going back to seeing one (even have a referral to one from last week but haven't made the appt yet)... finding a good one is definitely a huge step in wanting to excel in your control I reckon

[Jessie L]

Absolutely, that is incredibly common (one study showed 25% of 18-25yo type 1s hadn't seen a Dr in over 12 months), it is one of my hobby horses that the medical system should change its ways because so many type 1 ds drop out because there is no value in endo visits

This is spot on Mel. I haven't been to 'my' endo in over 9months for this precise reason. I have told my Mum I'm not going to an endo anymore and she is mortified... but really what do I get out of the visits? Nothing, not a single thing and I truly believe I am better qualified to change my dosages than my Dr. and after all... I've never once walked out of there fixed have I?

[Mel]

Hey Jessie,

I totally hear where you're coming from but I wasn't advocating not going to see an endo, I was suggesting there needs to be changes in the system.

My main reason for going to see an endo (after giving it up for quite a few years) is that I view our relationship as a sort of insurance policy. Each individual appointment is a bit of a nonevent after I've had d for so long but he is there if something goes wrong eg if I get sick with something else and it stuffs up my d, i get a complication and I need an urgent referral, if something weird is going on he is familiar with my history and general condition so I trust him more than Dr Joe Blogs to make better decisions about whether something is urgent or serious or whatever and as he is an endo at a teaching hospital he is up with the latest best practice and technology etc so if things change I can find out about it. There are also things like bp control and cholesterol which can have more impact on your risk of getting comps than your bsls and endos are usually better at managing and knowing about the best way of treating these in ds than GPs are.

Also I am fortunate in that my endo is actually a pretty good communicator and he does encourage me to feel empowered and like I am doing a good job with my diabetes so I come out feeling better from our consultations (unlike the jerk who put me off going to the Drs when I was 16-18yo, nothing was EVER right or good enough and I felt so crap for not being able to keep my sugars between 4 & 8 ALL the time so I gave up trying).

So Jessie, I reckon you should think about finding an endo that suits you and thinking about what you want out of the appts etc (ok I want a cure too and my endo knows that), even if you just go once a year and ask them what's new. If there is something in particular you hate about the appts eg being weighed or peeing in a cup or something you can always just refuse that element.

I think not seeing an endo can be a perfectly reasonable choice in some circumstances what is NEVER a reasonable choice is not seeeing an opthalmologist, They can save your sight-in many (tho not all) cases once you realise you have vision problems it is too late to restore things completely. SO ALWAYS SEE AN OPTHO AT LEAST ANNUALLY. If you don't like the one you've got find another one I know a few very nice ones.

Sorry for the long post, I so want to put together some resources for the site and/or a session for a conference on the whole Dr & diabetes thing.

[Eastwood]

I use my endo to get the check-ups every 3 months now - A1c, colesterol, BP etc. But I generally manage everything myself - basal/bolus adjustments and diet based on those results and don't really trust the endo's etc to a large degree when it comes down to day to day management. I read (and kept) this post from 'Klausen' on islet.org some time ago because it seemed to sum up what I felt about the medical profession and my experience with diabetes (but he said it a lot more eloquently than I could).

Whenever I visit a specialist, the doctor always wants to know what endocrinologist is managing (or, more politely, 'following') my blood sugar, to which I reply, "Me," which always evokes exclamations of surprise and concern that I am not being better supervised. But what good is a doctor in managing a diabetic's blood sugar?

First, the actual techniques of dosing the various types of insulin can be learned by a fifth grader in about a week, so the doctor's 'expertise' is wasted there for the experienced patient. But even in this area, the doctor, unless he or she has type 1 diabetes, is more of a hindrance than a help, because it is impossible to understand how difficult blood sugar control is unless you have the disease. Since doctors are trained to think they know best and yet in fact have no understanding or appreciation of the complexity of blood sugar management in the real world, their contribution to this effort can be positively dangerous.

Second, blood sugar management depends on the particular patient's lifestyle, and that is something the patient understands infinitely better than any doctor. If I am living at home writing a novel while in the constant presence of other people to guard against my having severe hypoglycemia, I can control the blood sugar level quite well, since it is no great inconvenience to be constantly testing blood sugar, injecting insulin, and counting calories, and no great danger to be skirting the edge of hypoglycemia. But if I am working in the outside world under intense pressure in a job requiring a lot of travel, involving unexpected challenges, as well as great time constraints, such that the boss might require me to work through lunch or such that I cannot afford to lose a half an hour dealing with hypoglycemia, then blood sugar control will be very different. Given these variations according to how I am living, the management of the disease can only be done by me, since only I know how insulin treatment interacts with the particular kind of work and schedule I have.

Third, only I can know how I feel with different styles of blood sugar management, and my doctor can only have a dim, second-hand awaremess of this reality. If approaching, experiencing, and coming out of hypoglycemia takes up three hours of my time with exhaustion, confusion, and recouperation, then I can't afford to keep the blood sugar low in the way that a person who can go in and out of that process in 20 minutes could. If I feel shakey, confused, and tired with a near-normal blood sugar, then that is not normal for me. If I have diminished awareness of the onset of low blood sugar, that is another factor to consider. Recently I find that I become intolerably sleeply if my blood sugar sinks from high to normal too quickly, so this is a new idiosyncratic factor in my physiology, which I understand better than any doctor treating me, so I have to be the one to manage the blood sugar around this phenomenon.

Fourth, there is the psychological dimension. Different people handle stress in different ways, and while some people can stand the stress of living every minute of their lives on the edge of a hypoglycemic coma, others cannot. Some people are depressed and frightened about severe hypoglycemic episodes; others are not. Depending on how the patient subjectively reacts to low or normal blood sugar will determine how control has to be managed, and this the patient alone understands, not the doctor.

Fifth, there is the philosophical dimension. How I want to balance my desire to enjoy a normal, productive lifestyle now, against my interest in avoiding complications in the future by keeping blood sugar perpetually on the brink of hypoglycemia, is a profoundly personal, existential choice. Some people would rather live twenty enjoyable, productive, free and spontaneous years with high blood sugar even if that meant dying at the end of that period from complications, while others are content to live in diabetic misery, testing, injecting, calculating, fainting all day and half the night, so that they can die of complications after thirty rather than after just twenty years. How to deal with the possibility that the patient may be genetically protected against complications and so may be just ruining his life unnecessarily by intensive blood sugar management, or how to respond to the chance that the disease may be cured or treatment may be improved in the future so that complications will not arise no matter what the blood sugar control has been up to that point, are also purely subjective decisions which the patient alone can make, not his or her doctor.

So for all these reasons, the legitimate role of the endocrinologist in 'managing' the patient's blood sugar is much smaller than the medical profession likes to think.

[abs]

Hey tink

Mel passed on your email to me - that is the Endo I have the referral for.

She was Jen's Endo when she had Gestational Diabetes in the last few months of her pregnancy with Jordy, and I think I went nearly every time with her (to check out her thoughts etc) - I agree, she is VERY good and very open to communication

That makes me take that extra step of actually booking an appt (tomorrow I promise)

[Spike]

My experince with D was very diffrent from eastwood's, i put a lot of that down to the fact that i was diagnosed very young, so by the time i was an angry teenager D was very much part of my life and the only one i had much control on so i did'nt let that go.

My folks where very good at getting me going looking after myself, (okay maybe their where looking over my shoulder but i felt i was doing it all) they also never made me feel like D was a burden or a problem which it is not like i've said before the only thing i CAN NOT DO IS MAKE INSULIN ( i also have issue with elevators) i think that good start from my folks was the best thing for my D.

I had major issues going from being seen by a childrens Endo to an adult endo so i did'nt see an endo for around 8 yrs, but i kept my shit together and ignored my GP dire predictitions of death and kept on doing my own thing. the only down side to that approach was that pumps where a revalation to me when i went to my first RC event, with an endo i may have gotten a pump sooner.

essential i think every one goes through more or less the same stages, but some get stuck, some skip and regress and some go straight to the end of the course. Things like
-age
-paretal support or partner support
-IQ (not sure if thats the best measure but hey it's what we've got to work with, if you can grasp the concept of D quickly it's a big help especial with the more complex aspects that make control easier)
-emotinal stressors independant of D
-level of control

all play a role in how easy/hard it is to cope with D, just my view

[Mel]

Re Eastwood's quote from Klausen, i agree with pretty much all he says and I think the endo's role is much more limited than most other HPs think it is, however, I disagree with a lot of Klausen's premises.

How I want to balance my desire to enjoy a normal, productive lifestyle now, against my interest in avoiding complications in the future by keeping blood sugar perpetually on the brink of hypoglycemia, is a profoundly personal, existential choice

I couldn't aree more and I think you have every right to make that decision and teh endo has to respect it.

I think people are rebelling against seeing endos because they actually don't have the strength to stand up and say "I choose how to manage my d and as my endo you can help me or I'll find another one" This is a big call when you are young, but I would hope something that we can help people do, afterall we talk about "consumers" and in a free ecoomony the consumer is always right.

Helping might be being hypervigilant in complication screening and counselling you on reducing other risk factors eg bp etc so that you don't have the double whammy of high a1cs combined with other issues. or it might be in trialing methods to balancing low hba1cs against hypos or it might just be in writing letters to Unis and filling out scripts.

DOn't let the endo call all the shots, power to the people !!

[Leni]

I think not seeing an endo can be a perfectly reasonable choice in some circumstances what is NEVER a reasonable choice is not seeeing an opthalmologist, They can save your sight-in many (tho not all) cases once you realise you have vision problems it is too late to restore things completely. SO ALWAYS SEE AN OPTHO AT LEAST ANNUALLY. If you don't like the one you've got find another one I know a few very nice ones.

I couldnt agree more. My vision is perfect (well, I wear glasses, but everyone in my family wears glasses), so it came as a huge surprise when I needed laser treatment for retinopathy. It was also REALLY hard to accept that without treatment I could go blind when there was no obvious sign (to me) that my eyes were in trouble. And I have always seen an ophthalmologist regularly - I can't (don't want to) imagine what would have happened to my vision if I had decided I couldn't be bothered going.

Also, I think a GOOD endo makes all the difference. At the moment, I have fallen off the wagon - I am lacking the motivation to really pay attention to my diabetes (I test and correct, but I havent been writing anything down, so I have no patterns by which to make basal/bolus changes - and if I don't write things down then my control goes out the window). My lovely endo is kind of carrying me at the moment... I see him often, he pulls the readings out of my meter, graphs it all out for me, and makes changes to my doses. Normally, (as in when I am paying attention) he makes suggestions and I decide what I am going to do... so him making changes to my doses isn't a normal thing for me, but for someone without diabetes he really "gets" it. He knows I am going through a really rough time (mentally) right now (due to the stresses of retinopathy and how it impacts on the rest of my life), he didn't give me a hard time about my last HbA1c (7.4% - the highest it has been in a very long time... I know this is a good result for so many people, but both endo and I know I can do much better) and until I get my act together and find some motivation to actually care, he is willing and able to guide me in the right direction. I really don't know what I would do without him.

When I am being "normal" I really only see him for the usual checks, albumin/creatinine, BP, HbA1c, scripts, and a catch-up. When I am being "normal" I can manage my own control myself and can get HbA1cs in the 5s.

[Be11ydancer]

.
I think not seeing an endo can be a perfectly reasonable choice in some circumstances what is NEVER a reasonable choice is not seeeing an opthalmologist, They can save your sight-in many (tho not all) cases once you realise you have vision problems it is too late to restore things completely. SO ALWAYS SEE AN OPTHO AT LEAST ANNUALLY. If you don't like the one you've got find another one I know a few very nice ones.

Hi Mel,
I haven't been doing the opthamologist thing. Would love to know of some good ones, especially if they are located anywhere near the west (if not it doesn't matter- will travel for a competent and sensible doc) Would you be willing to share your inside knowledge? My GP hasn't got an optho on his 'magic list' yet. He has a list of really good doctors who he will recommend to patients provided they are the type of patient who will actually try to help themselves and will travel if necessary. The list is never wrong, it includes the docs he sends his own family to and they are the kind of people who have loooong waiting lists unless your GP calls and personally asks.

[Mel]

Hey Shellie,

You need to update your email address in your profile I tried to email ya but the mail bounced. Sad to say though the only opthos I know are in teh north and east. Best bet is probably to ask your endo, endos would be able to refer to opthos who have experience with d eyes and if you like your endo then likely they will refer you to somebody else who is sensible.

[nicole1971]

Well I'm just about to cry.
I am so amazed that there are so many people my age with similar problems in dealing with this shit. Ive had dt1 for 20years, I'm 35years old and just in the last month I've started to try to get my head around things.
I was a shit of a teenager at 15, when I was diagnosed "from boarding schooL" All I heard was Oh thats why shes a hand full! I never did the right thing, drank myself unconsious many a night always ending up in hospital with some silver thing around me doctors telling my parents that I've got a death wish. Maybe I did, there was noone else with dt1 in my town, no support at all.
I had my first child at age 22 in melbourne and found a great endo alison who helped me heaps but my hba1 was over 9 at first I think, my memory is degrading on a daily basis! I was so scared that my daughter was going to be screwed the whole pregnancy "thats all I heard". She is beautiful and fine regardless of the bad start. If it wasnt for her my levels would never have come down, I just couldnt do it for myself.
To this day I still dont no anyone with t1d at all.

I dont see an endo because there isnt any in my area and the one that comes down from melbourne takes 6mths to get into and I just never bothered. Alison gave me her num and I called her a few years ago when I was having weight problems and went to see her, besides that I really pretended that d didnt exist in my world and that one day I would wake up and it would be gone.
The only reason we got the net put on was so my daughter could do her homework"Next year High school" Otherwise I would still be in the dark. So much shit has happened this year working out how to use this sight and the internet in general"I am completely computer illiterate, I make tutus for a living " has probably been the best thing I have ever done.

What i'm trying to say is for the first time I dont feel alone with D and there are people who do get it! Its shit and hard work and I dont know if its every going to get any better for me"Getting older body parts falling of etc." but at least I dont think i'm the only one anymore.

Another free counciling session! Ive forgotten my original point but I do feel better.
Luv Nic

[Anne]

Welcome Nic!

This forum is a great place, for support, laughing, information, moaning.

I think the search engine might help you dig out posts about other people when they just joined RC, as well as introductions. I personally look forward to Fridays and the '7' series (scroll down on the main forum until you find a thread by Llambo about 'the seven...', a highlight for the week which makes me laugh loudly and dsicover that diabetes can be fun too).
Each Forum has a bit of a theme, explained in the top post I think. I guess this ia ll explained by Kate in the Forum rules etc.

Looking forward to reading more about you soon,

Anne

[Mel]

Hi Nicole,

Welcome to the RC club it is great to find that there are people with the same issues I thought exactly the same thing when I came here about 6 years ago a complete revelation. Looking forward to seeing you around.