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I was diagnosed with type I diabetes 50 years ago and am now two months shy of 80. I have at least a little of every expected complication, but remain fairly robust and quite active. I would like to compare notes with other long term diabetics who have similar histories and who cope.
Exercise Surgery Acid reflux Cataract Diabetes Gastroparesis
I have had Type 1 for 37 years, quite a few emergency admissions, and complications but I do bounce back. Feel much better on the pump when things are going well but I'm worried frequency of tests is reducing which could put me at risk with eyes, kidneys etc.
What do others in the UK feel?
Best
Christine
Hi, was asking and wondering what sort of all the complications do you have? If you don't mind me asking you. I do know that no matter what you will get some if not all the complications that come with this disease...it's just a matter of when. If you take care of your blood sugars you prolong the complications for maybe awhile/long time compared to if you don't and you will get them much sooner. Just asking and would appreciate it big time if you would tell me...sorry that you have all the complications!
Kwisteen: What exactly do you mean by reduction in frequency of tests? What is being tested and how often?
I'm one of the lucky Americans with good health insurance thanks to Medicare and a supplimental plan supplied by my pension from a career as a State University professor. Like you, I gather.
I test my BG about 8-10 times per day and am in pretty good control with glicosylated hemoglobin (tested every 3 months) always 7% or less. My urine is tested for albumin at the same time. I talk with specialists every six months, a urologist, a cardiologist, a nephrologist, an ophthamologist, and, of course, my diabetes endocrinologist. Tested more than necessary, actually, because each physician orders his or her own tests and there is much duplication. Hopefully, Obama's reforms will eliminate some of that.
Lill. . .: What sort of complications? Well, if you read
up on the complications of diabetes, I have some of them all. More than you are ever likely to get, since you are young and can monitor your BG's and stay in control if you so desire, When I was diagnosed my Drs. told me "control doesn't matter." What they should have said was "control is impossible!" I was diagnosed a couple of decades before self monitoring technology was developed and marketed, so I spent a couple of decades with constant high blood glucose levels except for those rare moments when I went into dangerous hypoglycemic episodes. So complications got a good start. I've had thousands of laser shots on my retinas for hemorrhaging diabetic retinopathy, since arrested when I had the blood clotted vitreous removed from each eye which restored my vision from almost blind to 20/20 and no more hemmorrhages. I take blood pressure meds to protect my kidneys; so far, so good. My neuropathy has left my feet skinny, unpadded, with no feeling at all on top and hyper sensitive on the bottoms. My heart and lungs are doing very well so far, and I take a statin for cholesterol control. There are probably more complications developing, but my good control since self monitoring has paid off.
I exercise a lot--water aerobics, 3 hours a week, pump some iron twice a week, an hour of nordic ski walking a dawn on alternate days, bicycling when I find the time. I ski for a couple of months each winter from a condo I lease at Tahoe, and try to stay in shape for that. Mostly it's all for my diabetes, that is, staying in shape for skiing keeps me alive, I suspect. Anyway, regular frequent monitoring and exercise are the keys to living well with diabetes in my experience. Good luck!
As for me, Lil, high BP, proliferative retinopathy recently reemerged, some neuropathy including urinary and stomach problems etc, worried about kidneys. But I battle through. I have difficult diabetes that leaps from low to high but the pump certainly helps!
best
Christine
My worry is that tests seem to be being rationed at the moment and because of the proliferative retinopathy, I want to be sure about the kidneys. I see an eye specialist frequently at the moment (in treatment), a diabetes specialist once every 6-9 months, but kidney function tests are carried out rather haphazardly. This is all on the NHS and, in fact, I wouldn't have survived at all without it. I even find it very difficult to get travel insurance let alone medical insurance. Nice to talk anyway-I have 3 grandchildren with twins on the way-5 under 5!-so I'm ridiculously active and write a good deal. Life-I love it!
How do type 1s fare in the US who are not well-insured? Is there a safety net for them?
Best
Christine
Christine: Type 1's fare pretty well here if they're over 65 and thus covered by Medicare. Supplies then are free or almost free. If younger, they don't fare well at all. A disgrace! I save all my extra supplies to give to a free medical clinic for the homeless and destitute. Sometimes I order more than I need specifically for that purpose.
I think our kidneys need close watching, testing at least every three months. Can you insist on tests at you 6-9 month appointments? That would be minimal, seems to me, and save the NHS lots of money in the long run by keeping you well.
Hank
Christine: One further note--You mentioned high BP. That's the trigger for kidney failure and must be controlled. I hope you're on medication for that and can keep it low!
Good luck,
Hank
Hello Hank
Yes I am on medication for BP but wasn't being treated effectively until I started testing it myself. Similarly, I test urine unofficially for proteins and infections but the official tests are only done once a year and often delayed. My eye appointment was delayed three months and I ended with the return of the p retinopathy (BP hasn't helped). Preop next week.
No, you can't insist on anything-I've tried and no support from Diabetes UK.
If I could buy a test for creatinine and for microalbuminuria, I'd feel more secure.
But we shouldn't have to do that.
By the way, are you tested for autonomic neuropathy or CAD? We are not.
Dreadful about young diabetics. I don't suppose I could help from over here?
best
Christine
Christine,
I've never been tested for autonomic neuropathy, but I certainly have some of it: eyes don't dilate readily and return slowly when they do; urinary issues, mostly related to enlarged prostate common in males at my age: slight acid reflux on occasion which could be a foretaste of gastroparesis. Not much else, and it all may be more age related than diabetes. Probably both, and nothing bad enough to concern me yet. Not much to do about it anyway except stay in control. Like yours, my BG's fluctuate wildly, sometimes with no clear cause, so control is a constant challenge, to say the least. Good exercise for my aging brain, I guess. I eat healthy, but everything--except deserts which I fortunately don't much care for.
Re the plight of the uninsured, our national disgrace:
I expect some version of reform to be passed by Congress and access to insurance will be a great boon to young diabetics here.
My nephrologist tells me that "stage 1 kidney failure" is the norm for my age group with or without diabetes. He tells me that diabetes will not be a cause of further damage so long as I stay in good control, but BP could very well push me along to higher stages. So he concentrates on BP control with meds. So far, so good.
Do you mind sharing with me the subject of your writing? Fiction? Nonfiction? I've published a few academic pieces and my father's memoirs and have a great respect for writers and their work.
Cheers,
Hank
hello Hank
All really interesting particularly the bit about age related kidney problems. I'll watch BP then.
I write and perform poetry mostly and run therapeutic workshops using psychoanalytic ideas. (Found this useful myself) I have quite a bit published in the UK, including a pamphlet, CDs and a collection being considered at the moment.
Keep up the campaign for young diabetics-can I forward a letter from you to Diabetes UK mgazine Balance? Would it be of any help?-copy to Gordon Brown?
Best
Christine
sorry, i forgot, a few academic papers too, like you. What was your specialism?
C
Christine,
Ah, a poet! I once took a writing class with a famous American poet, Muriel Rukeyser, a good leftist, feminist activist whom I admired greatly. She liked me, but couldn't abide my feeble attempts at poetry. I once submitted a story instead and she asked me to please continue with stories and "do forget about poetry!" I did as she requested to the relief of both of us.
I'd love to purchase one of your cd's if you can give me a web site. You are a performer, too, I see. I did some of that in my past as a professional opera, musical theatre singer, bass-baritone. I was able to work in theatre enough across my teaching years in Summers and between semesters to actually earn a small pension from Actors Equity. Almost unheard of here.
I taught 33 years in a Department of Communication Studies at San Francisco State University after earning a Doctorate From Stanford University in Rhetoric with a minor in quantitative Communication Research
I retired at age 62 and was almost immediately hired by The New School for Social Research in NYC to teach online with my Mac from our home in Northern California wine country. I taught "The History of Communication Technologies" in a Medias Studies graduate program to select students across the globe
for 13 years and retired for the second time just last year. I managed to keep up with technological innovations, but thankfully got out just before Twitter!
I can manage Facebook, a little, but that's my limit.
I'm not sure your country can do much for health care reform here except what you already do by example. That is, universal coverage in a single payer system.
I'm sure you have complaints about your health service, but they are as nothing compared to the atrocities of neglect common here. And the slanders from the right about your system would make your blood boil, I'm sure. Interesting times, to say the least.
Cheers,
Hank
Hi Hank
My website is www.christine-bousfield.com If you contact me through that address I'll send you CDs etc
I know it's shocking about all the slanders from the right-I have sent emails to a campaign. I'm grateful to the NHS, of course. I can't imagine what would have become of our family without it.
You have been amazingly active- i retired aged 58 on ill health grounds but do lots of childcare and writing activities, as I said. Both of our kids have Communications degrees and our son produces music and comedy for television and radio. We clearly have a lot in common and I'd like to write short stories!
Best
Christine
Christine,
I visited your site and read your wonderful poems and vitae. I responded on the page, but want to add here that I was particularly moved by "Intensive Care." Probably because my daughter, now fifty-four, was born prematurely due to my wife's very dangerous Toxemia; my daughter was not breathing and struggling for life. I stood watching for an hour while a good doctor and good technology fought successfully to save her. And my son's first child, a girl, was born struggling and died in her mother's arms within an hour. Your poem brings everything back.
My daughter, by the way is a guitarist, singer and song writer. She is a Sixth grade teacher and is finishing up a Masters Thesis on using song lyrics to teach figurative language in teaching reading. She'll be presenting her study at a National Conference on the Teaching of Reading next month.
Thanks ever so much, Hank, for your comments. Yes, I lost our second son at a week old and I went into a diabetic coma shortly afterwards. Our daughter, born a couple of years later, was a miracle birth of new technology.
Interesting about your daughter's activities-I'd love to see a draft of the thesis because I'm teaching our grandchildren to read. Our son writes song lyrics, and I often have lyricists in my workshops. I'd like to write more myself though quite a few of the poems are song-like-did you follow the www.nightdiver.org link? (the posts are very out of date-i need to get to work).
Shall i try sending you some extracts from the CDs?
Perhaps you could send me some short stories, too.
Hope you're all well and creative!
best
Christine
Christeine,
A Masters Thesis here is about 100 pages long which would be a bit unwieldy to send, but I can send you a section to give you the flavor of her project. I wrote stories for the poetry prof over half a century ago and none since. My best writing, such as it is, is a group of "Missives from Hanoi," a kind of journal l sent to family and friends from a trip to Hanoi in 1977 when I was a guest lecturer at Hanoi University. So forget the stories, but I'll send you a missive or two if you like. My word processor is Microsoft Word for Mac which worked for all my students across the globe, but some friends here could not open my missives on their PC's. I could try to get everything into PDF, I suppose, but I'm not sure I can get the accompanying photos into the text with PDF. Let me know if Word will be OK. Or if indeed, you have any interest at all.
Please do send some "extracts." Re your "out of date" web site, actually I'm quite impressed. I had a web page which was my University classroom for 13 years, but have never bothered to build a personal page. No need for one really. Anyway, I'll wait to hear from you before I send anything.
Cheers,
Hank
Hello Hank
Pre op tomorrow. Your eye op sounds interesting-I've never heard of that being done. Does it work for proliferative retinopathy?
Word should be fine yes so do send me some things and I'll send extracts etc after the weekend when we have various family things I have to sort out. I have a few poems about diabetes, insulin pumps and retinopathy too-I suppose I could post them here? What do you think?
Stay well and happy-it's a pleasure to talk with you.
Best
Christine
Christine,
By all means post your diabetes centered poems here. I'm sure any diabetic would love to read them!
My vitrectomies were done after years of proliferative retinopathy and thousands of laser shots to slow the frequent hemorrhaging which left my vitreous cloudy. I was told that removal of the vitreous would remove the "support" system for proliferating capillaries and that I would probably never have another hemorrhage. So far, so good.
I have considered a pump, but I'm avoiding the hassle
of shower and pool (I do water aerobics for an hour three times a week with my wife), and I really don't mind frequent needle shots after all this time. Furthermore, I'm waiting on instant read embedded monitors which will run the pumps. If I were younger, I'd say I'm waiting for stem cells!
I'll send a couple of "missives."
Cheers,
Hank
Hank
Pumps no problem around water. Just remove and do a bolus either before or after depending on results of exercise. There was one that claimed to be waterproof with dangerous results!
Eye op sounds good-I'll discuss with my surgeon though I'm probably down for cataract surgery shortly.
You really have helped me to be much more optimistic re complications. I look forward to your missives.
Cheers
Christine
glad to have you as a friend, hank.
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