So here is a depressing question

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Josh F Posted: Sun, Feb 22 2009 3:13 PM

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I have lately been getting in very tight control. My last A1c months after a traumatic time in my life went up to a 8.9. I got down to a 7.4 and now am hopefully on a path to the 6s

I have had Type 1 for 29 + years...diagnosed in 1979/80 if I recall. I am now 34

I went through many years of not taking great care of myself when I was  a teenager and even in my 20s. Granted I was a brittle diabetic and found it hard to maintain good control

Been on the pump for about 4 years and things are better, and also getting on the CGM soon. I must take 15-20 blood sugars a day now, and I get tired for sure.

I have Moderate background retinopathy that has mainly been stable since first diagnosed in 2000. Nothing more than microanyrisms and coton wool spots...some mild vision impairmanet,but nothing major as I still have better than 20/20 vision and is  something i can live with as long as it does not get worse...thats why I am in the midst of really trying to perfect my control from this point on, (or have been for the past 4 months..I mean I was not terrible for the past few years, just in the mid 7s,)

i was online today just looking around, as I like to research things about this condition. 

I was sort of shocked to see the "average life expectancy of a type 1 diabetic" in my search...I had always been told maybe 5 years off the normal expectancy...but 15 to 20?

It sort of freaked me out...I mean at 34, i figure i will live to my mid 70s, like most men in the family....but to take away aadditional 10-15 off that..makes me feel pretty depressed.

I guess it depends how well you take care of yourself...I have an average blood pressure of 115/78, and no kidney issues and I am on lipator and lisinoprel....so it is my hope that coupled with a pretty thin body, I will defy the avaerage even with the retinopathy.

I know there is not answer to this, I guess I felt the need to vent a bit. I do really would like to be around to see my grandkids someday and not break my wife's heart by dropping dead in my 60s.

Best wishes to all,

Josh

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Spirit replied on Sun, Feb 22 2009 6:29 PM

Well, Josh, there are a couple of things to remember.  Those stats you were reading are about averages.  And, the sad truth is, most "average" diabetics don't take very good care of themselves.  Not long ago I read where the average A1c for diagnosed diabetics was 9.0.  Now, that's depressing. 

You don't fall into that category.

Many diabetics are still overweight and do not get the correlationship between this disease, blood pressure and cholesterol.  They aren't controlling for each of them.

You don't fall into this category, either.

So, I doubt that you will fall into the "average" life span category, either.  You seem pro-active and that appears to be the very best defense against the complications of this disease.  As a young diabetic you obviously were not as concerned about future health as perhaps you should have been.  But then young people, diabetic or not, generally are not too concerned about these issues.  Don't most kids thing they are immortal and will live forever in perfect health?  You were no different.  So, all the young kids who have sports injuries, ate absolutely terrible meals, drove when they had too much to drink, drank too much to start with, and let the pounds pile up when they were youngest and most active are sort of in the same boat.  That's past.  What counts for you is now and your willingness to reverse or control those earlier excesses. 

Your motivation to manage your diabetes now is your biggest defense against being a statistic.

When I was first diagnosed, I read a quote that has stayed with me.  A doctor said, "The diagnosis of a chronic disease can be the first step to a long, healthy life", meaning, of course, that we who have chronic diseases take overall better care of ourselves (when we are motivated to do so).  You are now motivated, so here's wishing you "a long and healthy life"!

Spirit

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Josh F replied on Sun, Feb 22 2009 7:00 PM

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Thanks Spirit. Your response helped. I guess I have been dealing with a lot of guilt over the poor care I took of myself growing up. To be honest, I am surprised I am in the health I am now as I recall years of non compliance and denial of my condition.

I had the highest blood sugar on record when I arrived at Joslin almost 1400, and lived (after some help from the staff) ;-)

I went through so many years of promising myself I would get better, and then because I am pretty brittle, I would get discouraged and lose hope in ever controlling it.As a young teenager and adult it was not uncommon for me to have A1cs of 10 to 12...I shudder thinking about that now.

Getting retinopathy in my mid 20s changed a lot for me...It made me really see my actions had an effect. So since then I have tried my best. I am hoping the new CGM will help.

I guess I just get down...most people look at me as a healthy person and are not even aware I have a chronic condition. but there are things I need to do soon to better my chances.

I just signed up for a gym again...it has been 2 years since I used to go every day. I think my depression kept me from going out and exercising. I am sure that has had an effect on my overall health.

And since my retinopathy had some issues with cotton wool spots in a short time, I got really freaked out about losing my eyesight. I am a professional designer for Puma, and my livlihood and sense of self is in my ability to do my work....so I guess I feel at 34 I need to make the extreme change to become a near perfect diabetic no matter what the sacrifice. I just hope it is not too late in the game to prevent worse complications. I know this is an emotional time for me and I tend to look at life in a pesimistic way. Both my eye doctor and Joslin Dr think I will be ok...but there is always that nagging what if ...

I am sure we all have been through the fear an uncertainty this condition brings us.

Thanks for the response though. It really helps hearing from others who truly know what I am going through first hand.

best to all

Josh

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Spirit replied on Sun, Feb 22 2009 7:23 PM

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Depression is a serious disease, too.  I'm glad to hear that you are taking steps to combat that, too.  Signing up for the gym is a terrific step.  Exercise is a wonderful way to get control back in terms of diabetes.  But it has a lot of other effects as well.  Exercise can release endorphins that are crucial to mood elevation.  Getting on a treadmill can be like taking an anti-depressent drug if you do it regularly enough. So, with one action you are getting double your money...good diabetic control and emotional stabilization as well.  Let us know how the gym thing goes.  We're here to listen, sympathize and help.

Spirit

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Josh F replied on Sun, Feb 22 2009 8:05 PM

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Thank you.  ;-) I will keep ypu updated. I hope I can help others as well with my path to empowerment with this.

I am glad I found a place to talk to you all.

Best to you all

Josh

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Janet replied on Mon, Feb 23 2009 4:25 AM

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Hi, Josh!  There is little I can add to Spirit's wonderful replies to you, but I did just want to say that it sounds as if you have got a real handle on things now, and that's what really matters.  If your ophthalmologist and endo are happy with how you are doing,  the progress that you are making and your likely road ahead, that's great.  The past is the past and there is nothing you (or any of us) can do to change it.  Difficult as it is not to dwell on it, there is little to be gained from that and much potential damage to be done from doing so.  What counts is learning from it and moving on.  What you can change is the present and the future and that is what you are doing. 

As far as how much this disease shaves from our life expectancy, who can tell?  The figures quoted are only averages and it's a mixture of genetics, luck and good control whether you come in higher or lower than the average.  I have always thought that I wouldn't make old bones, as I have been very overweight for most of my life and have a number of chronic health conditions.  I was saying as much to a colleague only last week, and he told me that his grandfather had been very overweight his entire life, yet died at the age of 97 while cycling to see his much younger 'girlfriend'.  He got near to her cottage, saw her at the door, took one hand off the handlebars to wave to her and the bike went off the road, into a ditch and he died.  But to die coming off your bicycle at 97 while waving to your lover isn’t a bad way to go!  None of us knows what lies ahead, but if you are doing all you can to control your diabetes now and continue to do so in the future, you’re doing well.

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whalen replied on Mon, Feb 23 2009 8:20 AM

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Hi Josh-

To some extent, I understand how you feel.  Diabetes is a very discouraging disease.  But you really seem to have a handle to it--I think the exercise will help you with bith the diabetes and the depression that often seems part of a chronic illness.

Hang in there and please keep us posted as to how you're doing.

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Short-Jan replied on Mon, Feb 23 2009 12:00 PM

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Janet that's a wonderful story! Thank you for sharing it with us. I'll definitely keep that gentleman's image in mind as I continue with my daily activities.

I've been reading  the response to Josh and Galemarie because I'm also dealing with similar issues. As a type 1 for 53 years and an artist whose vision was damaged by diabetic retinopathy while  completing my Master of Fine Arts studies, I relate to the concerns Josh voiced about the ability to continue his design work. I also understand the fear of financial distress. The advice both have received has been helpful to me also. I wish I had answers, but all that I can share is the knowledge that life is right now. I'm determined to be grateful for today and to find something to laugh about.

Thanks,

Janis

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Josh F replied on Mon, Feb 23 2009 1:29 PM

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Hi Janis,

I know it is hard isn't it. We are people whos profession depends on our sight and it seem cruel this illness would rob us, of even a little of it.

I have had diabetes for about 30 years, and it is my hope that this trying time is a transition for me to really get to where i need to be health wise. I went through a divorce about a year and a half ago and it threw me into a place where I was not taking as good care of myself as I should have.  But happily I met someone more wonderful than I ever could have imagined and she is very supportive of me.

My problem comes from wanting to know if I do this, then that will happen...I look for logic sometimes where there might not be any clear answers.  My greatest fear as a child was either losing my sight or the use of my hands...i n the past year I have had some issues with both, as i was diagnosed with Dupeytrens contracture which is super rare in a person my age. So my stress levels have been off the charts. I am doing everything I can to be healthy and maintain what I have.  i will be honest, I have a few spots in my right macula that blurs my fine vision (mostly text and stuff on the computer) but with both eyes open, I don't notice it, and it is far from hindering my art or work. But I have always had 20/10 eyesight most my life. I am 20'16 in the left and 20/20 in the right, so obviously I am not going blind any time soon...if ever, as I am so aware of any change, that my eye doctor thinks I am the most observant patient he has.

I have moderate background retinopathy, so I don't worry about PDR any time soon, and my eye doctor (Dr Sharuk at Joslin Beetham) in his oppinion does not think I will get it, because I am so tightly controlled now...but I have ( I mentioned this in another post) cotton wool spots that seem to show up from time to time, that both take a long time to resolve, or sometimes never do.  if you are not familiar with them, they are oxygen deprived areas in the retina from disrupted blood flow in the nerve fiber layer(the optic nerve is made up of nerve bundles and these travel from the optic nerve to the peripheral of the eye to the macula where they are the thinnest.

Unfortunatly unlike having a hemorage of a vessel, once you get a CWS (cotton woiol spot), it is a permanant deal...the swelling around the blocked vessel eventually goes away, and the grey halo around it subsides a bit, but they still leave behind small or not so small blind spots)

Low bloodsugar can cause this to happen as well as high, which I guess is what had freaked me out, as i got about 6 new ones in a few weeks while my sugars for some reason where all over the chart...the ol rebounding issue everyone is familiar with.

What i also worry about is maculer edema..as i have a few bits of leakage near the center. But they have reabsorbed in the past when my control was better. I have never been told I have edema, as I guess that is actually swelling of the macular retina, not just if you have some leakage...but I am not sure. perhaps i should ask my Dr.  But then again, it will make me obsess about it, and as it is, I check my eyes man times a day, which in the end may be doing more harm than good. My dad is convinced my poor state of mind is having an adverse effect on my body....and I remember 4 years ago when I was having multiple cotton wool spots , and i was closing one eye and checking each one, like 50 times a day...it seemed the more i checked the more things I saw happen...It was not until i relaxed a bit, that the changes seemed to slow down a bit. So maybe there is a connection with mind over matter.  ;-)

So right now, I am working with Dr Wolpert to get on the Navigator to be sure my fluctuations are not that bad. I have for the past couple months..been taking bloodsugars every hour, sometime half hour to, better understand how my body works... after 3 decades, I am finally trying to conquer my brittleness, and see what I can do to stabilize myself once and for all. I am certainly willing to do anything it takes to keep my health, as I hope to marry again (the right person this time) and have the kids and life I know I can achieve with enough determination.

I have been through a lot in my diabetes...3 flatlines in my life..clinically dead at 5 from my 1400 bloodsugar (because Childrens hospital did not diagnose me during the month I was there)

My body has been through a lot, and it has survived. I feel it is time to return the favor and make every effort to treat it like a temple and hope and pray it continues to return the favor.  ;-)

God, that was a long post...Lol. Sorry, I guess I have been thinking a lot about this, and as much as family and friends can have empathy, I know they don't understand it fully.

Janis, good luck and stay strong. I will pray for your sight, from one artist to another. We got to stick together.

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Spirit replied on Mon, Feb 23 2009 2:47 PM

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Janet:  Love the story about the 97 year old!  Now that's an inspiritation.

Spirit

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Ron AKA replied on Mon, Feb 23 2009 6:31 PM

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Josh, I have seen the statistics on life expectancy too. Was a shock until I realized these are really just averages, and I can control how I fit into those averages. From day 1 I've made it my priority to beat the average by as much as I can. For that reason I have gone after the heart issue as aggressively as I can; statins, ACE inhibitors, and exercise. What more can we do? My thoughts are that you do what is possible and not worry about the rest of the stuff.

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donw replied on Tue, Feb 24 2009 11:30 AM

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Best advice I ever got was to take one day at a time and enjoy it as much as possible.  Scientists can make numbers say anything they want them to but there is not one scientist or doctor that can tell you how long he or she will live.  If you stick around long enough you will see the same survey change results several times.  Just look at all the studies done on coffee over the years.

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tylersydney replied on Tue, Feb 24 2009 8:43 PM

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Though type II..a friend of mine..a retired Pediatrician..lived to 92...

He was never sick til 91.

He did not exercise.... just used a pretty tight diet regime.

He lost three wives to cancer...(his 3rd wife was my friend..she died at 51..29 years his JUNIOR!!!! ) yet he had a very positive outlook on life..

I visited him  at the hospital the night before he died.

I asked if I could get him anything..he had refused food for days.

His final word to me was simply: "ICE"..

I fed him ice chips and said goodbye...He died the following day in Hospice.

So..LIVE each day as best you can...and look forward..even at 92!

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lebrecht replied on Sun, Mar 1 2009 10:54 AM

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The moral of this story is that if you have good genes, that's what counts.

All of the diets, medicines and life style habits may make you FEEL better, but without the good genes inherited it really makes NO DIFFERENCE.

Anne

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nomorecarbs replied on Sun, Mar 1 2009 7:38 PM

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Fortunately, one's genes are not the only determinant of either active life expectancy or longevity.  I've already outlived most of my male ancestors and I'm only 63.  None as far as I know, ever looked as youthful or was as physically active as either myself or my one year younger brother.   Having long lived ancestors may indeed be helpful for those seeking a long, active life expectancy, but it is NOT determinative.  Longer life expectancies today are largely due to improved sanitation, lower infant mortality experience, fewer epidemics, lower workplace fatalities, and rising living standards (relatively few people die from hypothermia or malnutrition today).

When I was a kid, people over 60 were indeed old.  One didn't see grey haired folks jogging or riding bikes.  We didn't have all of the refined carbs back then that folks today have.  Adopt a modern active lifestyle with the old diets of our ancestors, and you may enjoy a long, active life expectancy whatever your genes. 

The important thing to remember about your genes is that they have been inherited from forebears who successfully endured incredibly ardurous environments.  We are all recipients of miraculous genetic inheritances from millions of ancestors who have thrived throughout the world in varied climates and varied topography.  Maybe the last generation or two didn't do well, that is not an indication of your prospects.