Easier My Arse

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1

Okay, almost 50 years in as a T-1 so I consider some of my information about this disease helpful. Having written that statement, I have to say this loud and clear, Diabetes Does NOT Get Easier. In my view it only gets more familiar. Big difference. So telling diabetics that it will get easier does not help.

No one on this planet, in this lifetime understands diabetes. This means that we are not the exception. We know what it takes to stay alive, what it feels like to live with a chronic disease second by second, what it costs us and our loved ones, but no one knows the complete story of diabetes. No one! Not the specialists, not the researchers, not the educators, no one. So why do we think that it is different for each of us?

I believe the "Art of Diabetes" is in the knowledge, support, understanding and stubbornness to keep on trying to stay alive in one piece may be the key to this disease. All of that takes time and often we do not have that time. All of us have dealt with despair at one time or another when it comes to the toll on our lives this disease takes. Some times it is just too much to endure. What then? Platitudes? I don't think so. A realistic look at what we are facing is the surest way to success.

I can hear some of you right now who disagree with me and that is fine. However, do you really believe that years later after your diagnosis that it is easier today than that first year? For most of us, it is actually more difficult as the complications creep in. Not very encouraging I agree but honest. In my world without the rules to the game I cannot win. I need to know the truth in what I am facing and then somehow find the courage to face it.

In 1995 I began to go blind in both eyes. Now I am a biker who operates her own 800 plus pound motorcycle. As far as I know they do not make a "seeing eye hog" so something had to be done. At first I quit working (at a career I loved) stayed home in bed for 20 hours a day and became clinically depressed. No one knew what to do as I have set myself up as a strong and independent woman. But, one day my hubby came home with a 1" blurb in a magazine looking for subjects for an Islet Cell Transplant study. I left the bedroom and started pursing this goal.

For 6 years I was in a world-wide trial to cure diabetes and became the 1st person in North America on 11 September 1998 to receive an Islet Cell Transplant. Rocked my world it did! I did not get off insulin but my complications stopped and began to reverse and my eyes were given a reprieve for 20 months. When I rejected I was beyond grief and practiced self pity until I relized that I had been given a window of opportunity to save my vision.

So far so good, but it was not easy! Never easy but always worth it in the end. I finally went on a pump (about 10 years ago) and started going to The Mayo Clinic in Rochester, MN. There I had a victorectomy of each eye and found the most amazing medical professionals who understood the fine "Art of Being Diabetic."

Most importantly, I am still riding my own motorcycle. I have all of my original equipement (body parts) except for an appendix (removed healthy from my body another long story for later perhaps) and I think after almost 50 years I am accepting the hand dealth, diabetes.

So buck up my fellow diabetics, realize this is not easy, give yourself credit for making it this far and look forward to the next challenge that life hands you. Because anyone who can begin to master the art of diabetes can do anthing. Natianal health care in the USA anyone????? Jax

2

It certainly doesn't get easier, and complications are the pits. But it does get more habitual, and less frightening when you know more about it. It's really a steep learning curve in the beginning. As you say, diabetes is an art for those who are dealing with it, and we all need the support of people who know what we are going through. I cried for hours when I was first diagnosed, and now, 19 years later, I have stopped crying, and am working on having the self-discipline not to let my control slip. Rational instead of emotional. Which is not to say that I don't get emotional at times, and episodes of major depression certainly don't help. But I'm trying to do what I need to do, regardless of emotional state, and especially when I don't want to. I'm enjoying this website, just for the chance to talk to fellow diabetics and express my feelings freely.

3

May be slightly off topic, but islet transplants are somewhat temporary at this time. As a therapy, it sounds great, but only if you can continue to get repeat transplants. Otherwise, as you say, it is just a reprieve. Do they limit the amount of times you can have the procedure done? I find this post inspirational, as you have continued to live as full a life as possible and you have successfully fought complications. Keeping that fighting spirit alive is the best thing you can do. I have been told blood sugar control was somewhat easier once you reach adulthood as extreme growth spurts cease. But I have never expected it to be easy. You are all warriors.

4

Glad to hear that you are doing well. I had an islet cell transplant at U. Minnesota in 2008. I had 2 years being insulin free. Now, I take about 8 or 9 units/day and am under very good control. My vision was good, but I did have some retinopathy before my transplant. Now, I have none. I’m hoping that my other organs have been appreciating this reprieve as well. It continues to be such an amazing experience.

5

We have a lot in common. I too, have had Type 1 for 50 years. And ride a motorcycle. This disease does not get any easier, because it always about making decisions every day, every hour about what to eat, how to calibrate insulin, activity and never feeling that what we do has a freedom to it, that the rest of the world takes for granted. Oh well. You are right. Sometimes I think the only people that will understand our lives and lifestyle are other people who share our disease. I was just talking yesterday to a friend who also is Type 1 and saying , if you tell an Earth person (someone who does not have this disease), something like , I was 29 last night in the middle of the night they will not understand.

6

To clarify, when I had the Islet Cell "Transplant" (more of an implant) they did not really know what to expect. Their hope is that one day the proceedure would be so simple that it can be done in a doctor's office. I had to remind myself when I rejected that they learn more from their mistakes than their successes. And no, right now, once you have had a transplant you cannot have another at least that is what my research has shown.

I think it will end up being a combination of islet and stem cells that will lead to a "cure." But, being cash cows I do not see this happening any time soon. I am a realistic optimist, not a pessimist in case you are wondering....

7

First off, I agree that it does not get easier. Also, I had always rejected the idea of an islet cell transplant since they don't last. But your post encourages me to look at it in a new light as a reprieve and a way to possibly slow down or even reverse complications. I'm so glad it was a good experience for you, and that your complications receded so that you could continue to embrace life.

8

Well said. I have found that it has gotten much harder. I think it's great that you are still riding and living life. It gives me a little bit of hope to keep plugging away at this.

9

I don't know if I find it easier now or I'm just so long into it that I don't remember anything else. I don't find it difficult. I got sorta serious when I developed retinopathy. But I wasn't all the way there and I found I still harbored a certain amount of resentment about being a diabetic. With education and some discipline I feel much more in control (but I will readily admit that sometimes the best laid plans of mice and men . . . ). I stopped hating it, I stopped asking "why me" and realized the real question is "why NOT me?" I stopped thinking of it as a punishment and started thinking about as less of an enemy and more just a bum pancreas. Stuff happens. This is my stuff. I have at times, suffered burnout and there were times when I was on MDI when I really would be angry that I had to take that shot before bed. We all have our moments when this stuff gets to us.

But you have to think: what's the flip side of this? What happens if I let things slide? Blindness and kidney dialysis. This particular model of the human being happens to need to be constantly adjusted like a race car. It is my lot and once Dx'd, it is what it is. Not being constantly pissed about it is a good first step to making things easier.

10

For clarrity on the islet cell implant, once I rejected all the complications returned. Apparently the key to no complications are C-Peptides. When the beta cells are producing insulin they are also produce at a 1:1 ratio, C-Peptides. Previous studies on C-Peptides showed no difference in the "non-diabetic" subjects. It has recently been studied on persons with diabetes, that C-Peptides halt complications. So my question is: where is my vial of insulin with the 1:1 ratio C-Pepties for my daily consumption. Hey I am dying here in bits and pieces! A little help from the medical community would be nice. Jax