Today is the 20th anniversary of my diagnosis and my eye doctor said...

[Darth Math]

I'm 27.  I went to the doctor for an eye exam a few hours ago and as a present was told I have "Clinically Significant Macular Edema". The backs of my eyes are bleeding and swelling.  Happy flipping anniversary!  Sorry, I'm a little bummed right now.

I've worn glasses since middle school and my vision has never been great.  The only symptom I'm noticing right now is that my night vision is quite poor.  Also, I had a hard time with all their vision tests.  Although I have a degree (in mathematics) I'm delivering pizzas for money because I'm not ready for a real job.  I don't have health insurance.  I guess I'm not contributing enough to the GDP to deserve proper health care... Canada is looking like an awfully nice place to live right now.

The eye doctor wants me to see my endocrinologist immediately.  This really sounds like a waste of time and money to me.  At my last appointment in December I paid him $80 for 5 minutes and a piece of paper saying that I should be allowed to buy Humolog and Lantus.  If I go and give him more money I expect all that I'll get is an exhortation to lower my blood sugars.

My HA1c tends to run between 7 and 8.  My sugars have been horrible for the past month.  For awhile I thought I got a bad bottle of insulin.  My sugar levels have been on a roller coaster.  They'll go high then crash, haigh then crash... to make it worse I feel like I'm having insulin reactions at 200.  I've been trying to get them back under control.

continued...

[jdrf team dm]

Dear Darth Math,

I am so happy for you. This is great news! I cannot stress enough the importance of people with diabetes to take care of their eye-sight with timely check-ups. So much can be done, especially if it is caught early. Thank you so much for letting us know your results. It is always good to hear of a positive outcome.

Keep in touch,
dm

[Darth Math]

Thanks again everyone I have very good news!  

My endocrinologist checked me out.  My a1c (2 weeks ago) was 9.0 (I knew it was gonig to be high).  However I had no protein in my urine.  Yesterday I saw the opthamologist he referred me to.

The eye doctor said my eyes look great for someone who's had diabetes this long.  See said you can see that my sugars have fluctuated over the years but all in all they look great.  She doesn't see any bleeding or leaking and sees no signs of edema.  She said I do have some micro anurisms on my veins but none are leaking.  We're gonna do a follow up exam in 6 months.  She did mention that my optic nerves are slightly large and is gonna check a peripery exam I had last month but doesn't seem terribly concerned about that. I guess some enlargement of the nerve isn't uncommon among the near sighted. I dunno what the other lady saw but apparently it either didn't exist or went away with a month of low sugars.

[JDRF Team SGG]

Please don't give up on any benefits of tight glucose control. It is well known that high glucose ranges are the cause of damages to blood vessels, but it is not widely publicized that when you tighten up those glucose ranges to normal values, your body can begin to clear away that bleeding in the eyes (or other organs) if you have not grown excesssive new, weaker vessels. I believe that most opthamolgists will do a follow-up dilation in about three months, and it is possible for your body to work to clear up the bleeding on its own if you remove the source of the problem (high glucose in the blood vessels). I have been a type 1 for 34 years and, after one three-month period where I had suffered from higher glucose than my usual tight control due to a horrible bout of flu that had me sick for two months, my eye doctor spotted a couple of tiny blood specks. With the glucose back to normal tight levels, those specks vanished completely in three months. While it seems that you have something more serious than a few specks, you didn't mention whether you are generating new blood vessels to compensate for the hemorraging. If not, then that blood can be carried off in a few months if you lower the glucose ranges. So I would not only beg you to see your doctor, but take every possible step to get the glucose under control now and keep it that way. That was good advice about pestering your doctor about specific things you can do to make your control better. We each need to find the system that works for us, personally.  I wish you the best.

[Darth Math]

Thank you both.  I talked with my one of my cousins who's had diabetes 32 years and she helped ease my mind as well. She's had laser surgery several times.  I will be seeing my endocrinologist later this week.  Thanks again.

[jdrf team dm]

Dear Darth Math,

Thank you for reaching out to the Juvenile Diabetes Research Foundation.

I am so sorry that you are experiencing macular edema. Did you see a specialist that explained possible lazer treatments? If your HA1c is running between 7 and 8 you are doing well. One month of bad blood sugars can happen to anyone. Especially if your under stress. On the other hand I agree with christie. You do not want to wait. You may want to check your local hospitals and clinics that can help you without insurance. I don't know where you live, but many have programs that have, can help for  free depending on your income. My son is your age and has a lesser problem with his eyes. A problem all the same. Insurance has always been a major issue with a lot of people. Please don't give up.

I would recommend that you contact our Online Diabetes Support Team. This is a personal one on one that connects you with a volunteer that has experienced the same problems. The site is www.jdrf.org/supportteam.


christie has the best advice. We ARE responsible for our own health and I know it can be difficult. There are resources out there that can help. Please keep in touch.

christie,

I thank you very much for your insightful comments. You are always very welcome in this room. Please feel free to contact us at anytime. I would love to hear from you.

dm

[nurse12hr]

I am not affiliated with this site; just reading through and can hear how discouraged you are, and as a nurse, just thought I would throw my (probably unwanted) opinion in the mix.

Your blood sugars are out of control, you know that better than I.  You are developing a serious complication of diabetes.  You could be developing other complications, such as kidney disease, but without your endocrinologists evaluation, you don't know. (You may be following up with general doctor, I'm not sure from your post). Your health is nothing to mess around with on your own, in my opinion.  You have been chasing sugars for the past month, with not so good results.

I believe saving your sight and your future health is worth $80.  Worth $100.  Worth $1000.   If you go to the endo and all he does is lecture you, it is YOUR responsibility to have a list of questions prepared as to HOW EXACTLY you are to try to gain better control.  Don't just let him lecture you!  Your health will determine whether or not you work in the future, after all.   Don't leave his office without a written plan as to EXACTLY how you are to proceed, day by day, week by week, month by month.  Doctors try to rush you out--we all know that.  Sit there, with your list of questions and your notebook where you are going to write down your plan.  Don't get up if he tries to wrap things up and you are not satisfied with what he wants to do.  Sit there, and keep asking questions.  Rehearse at home in front of the mirror, if necessary.  DON'T BE BULLDOZED OUT OF THERE.

Bottom line--your health is your responsibility, ultimately.  You can try on your own for a while longer, but eventually you will be back in this same place--possibly with furthur health issues.  Learn to take control now.

Dan, you have my very best wishes and a sincere hug is being sent over the internet to you.  I am sorry if this sounds like a lecture--I am concerned and ache for you and your situation.  Keep us informed, ok?

Good luck.

[JDRF-Team-LRS]

Darth,
What a sad time it is for you now.  I've had diabetes for ~35 years, and can relate to the strain of needing to watch out for ourselves 24*7 -- even on vacations.  There is no vacation from diabetes.

While an a1c between 7 & 8 isn't "the best," it's actually not that bad.  We do lower our risks for complications (and can even reverse some) as we lower our a1c into the 6 range.  It's worth trying for as long as we do so without lows.  THAT's really tough to do without pumping.  Even then, it's tough.

Sounds as tho' you may feel terrific aobut your endo either.  It's so much easier if we feel comfortable, with all our imperfections right out there, to work with our endos.  If s/he is condescending or just doesn't "get it" how tough it is to manage a chronic illnees,  well,IMO it's to shop for another endo.  Sometimes, we can get "stuck" working a doctor cuz that's who we were assigned to ... but there's no reason to stop pushing for a different one.

ANother type of person who is very helpful with managing this disease is a CDE -- certified diabetes educator.  They are often not physicians, but are well-schooled in the day-to-day realities of managing food, life, rest, exercise.

WHile none of us here is a physician, we've all either "been there" where you are -- or are very close to someone who's been there.  The comments included some great perspectives and suggestions and Ihope that some of them resonate with you & help create a better sense of hopefulness. Your diabetes is NOT a lost cause.  If you can make even one step toward improving your situation (I *know* it's tough to do when feeling so discouraged), you'll really be taking a huge step forward on all fronts.

Truth is, even in Canada, when a diabetic is looking at ways to feel better and get/stay healthy -- the first place we must look in the mirror.  There's lots of opportunities staring right back at us, if we can muster the courage ....

I wish you some new successes and hope you'll post again with an update.

All the best,

[Darth Math]

...continued

My question I suppose is; Does trying to get my blood sugar levels re-stabilized on my own then having my eyes re-examined sound like a reasonable course of action?  My eye doctor somewhat endorsed this course when I told how useful I thought throwing money at my doctor would be.

I was reading this site and things sound a bit scary (and expensive).

http://www.eyemdlink.com/Condition.asp?ConditionID=111

Thanks for your time, Dan

PS: Sorry if I sound a little pessamistic.  Just a lousy day.