Eyes - So frustrated and angry!

Goul22
Goul22 Posts: 34 Member
edited December 1 in Social Groups
Hi!

Sept 2014 I had the start of diabetic retinopathy in my left eye. I vowed to be a lot more aggressive with my diabetes management. And was! The bleeding even disappeared.

Bad news again on the 6th... It's back. Same eye. And apparently it affects my peripheral vision now. They want me back for yet another visual field test in Sept.

I am SO angry, frustrated and yes, depressed. I have been doing all I can to avoid complications but it seems no matter what I do, this stupid, moronic, idiotic disease has the upper hand. I HATE YOU d!!!!!!! And you don't even deserve a capital letter. The thing is, if there's damage there... I can't help but think there might be damage elsewhere. That's what depresses me the most. I'm trying my best to not let that get to me but there are times it's all I can think about. I know this is (familiar) falling-off-the-wagon territory... A very dangerous terrain to navigate indeed. Help?

Fasting sugars : 6.8 mmol/L (123 mg/dL) so too high. &$@*^+#~<?!!!!!!







Replies

  • judyvalentine512
    judyvalentine512 Posts: 927 Member
    That has always been one of my biggest fears, even before diabetes. Last year, I had a stroke in my left eye. The doctors at the eye institute said I was legally blind. Talk about panic. I still have a grey donut in that eye without my glasses.
    I really feel for you! Are you getting good advice from your endocrinologist, or diabetes educator? Maybe check in with them for extra help?
    Whatever you do, don't give in to the damn disease. Just like anything else, one day at a time.
  • heartandsoul1
    heartandsoul1 Posts: 9 Member
    hang in there ! Just think of damage if you don't take of yourself. I know the frustration , I have had a year and a half of trying to get mine under control, you can do everything right and it still isn't enough. Find a endocrinologist that it matters to it helps a lot.
  • JaneKnoll1
    JaneKnoll1 Posts: 406 Member
    We are here for you!! It's a fear I think we all have...and I understand te hatred you have for d as well.
    Lots of support here and maybe keep more engaged about your diet and exercise on here/friend timeline. I feel the support has helped me keep to it and that I am not alone....you are definitely not alone. We get it and are here to help you keep on that horse and kick d to the curb as much as we all can. I agree with a dietician visit and maybe an appt with your doctor and recommitment. You may need your meds altered. HANG IN!!!!!!
  • Goul22
    Goul22 Posts: 34 Member
    edited April 2016
    Thank you! I keep saying to myself hey! You've been through worse. You're a tough cookie. Do you guys feel like beating the crap out of diabetes? I'll hold stupid d down, and you all kick with everything you have ;) ... I think lots of people would volunteer too.

    Judy, a person can have a stroke in their eye??! I had no idea!!!! Was it diabetes related?!

    Heart & Soul, that's what gets to me at times: you do everything right and it's still isn't enough.

    I don't have an endocrinologist. The (twit) doctor I had before said if I wasn't so lazy with my diabetes, I would do better. My current doctor finds I'm doing not so bad. Should I push to get a referral?
  • JaneKnoll1
    JaneKnoll1 Posts: 406 Member
    When are you going back to see the doctor? Maybe see how it goes this time and then ask when you are next there?
    Yes I will kick or hold down d whatever is required lol!!
  • wdnisbet
    wdnisbet Posts: 518 Member
    The doctor I am seeing now is not a board certified endocrinologist. He does however have additional training in diabetes management with a certification from the American Diabetes Assoc. that assures patient he is more informed/has had additional instruction on this subject. I have used endo. specialists before. I like this guy better. But I definitely think that one or the other is a good idea. I do not believe I would get as good info. with a general practitioner. If you have any concerns you can perhaps seek a second opinion and see what you think at that point.
  • Goul22
    Goul22 Posts: 34 Member
    WD, as you, my doctor has additional training but he's not an endocrinologist. He is a lot more supportive than the other twit I had before him, who kept saying I was lazy, even if I was able to considerably reduce my A1C. He wanted it under 5. I just couldn't but came quite close. Yeah, I guess I was lazy.......

    I did go to a "diabetes class" last year. Was quite informative!

    Next doctor's appointment in on the 26th.

    Thank you everyone!
  • judyvalentine512
    judyvalentine512 Posts: 927 Member
    The stroke I had was a Central Retinal Vein Occlusion. The vein behind my eye burst because of high blood pressure. Just one more battle to fight.
    I too sometimes feel like giving up, but I survived a lot of crap the last two years, and I'll be damned if diabetes gets the best of me.
  • Goul22
    Goul22 Posts: 34 Member
    Judy, wonderful attitude. When I feel down, I'll read your post again.
  • wdnisbet
    wdnisbet Posts: 518 Member
    So yesterday I learned there has been some bleeding behind my right eye. This is scary. The doc want to take a wait and see approach right now, in part because I have had pretty decent A1C readings lately. Also because the only treatments available are invasive. Lasers or meds injected directly into the eye. This sounds very dangerous to me. I am praying I can manage my behavior now in a way I never have before. Keeping my sugar down is my best hope to save my sight.
  • RalfLott
    RalfLott Posts: 5,036 Member
    Goul22 wrote: »
    WD, as you, my doctor has additional training but he's not an endocrinologist. He is a lot more supportive than the other twit I had before him, who kept saying I was lazy, even if I was able to considerably reduce my A1C. He wanted it under 5. I just couldn't but came quite close. Yeah, I guess I was lazy.......

    @Goul22 - I can feel for you!

    If you came close to 5, you were doing great! Even 5.4 represents an approximated average BG of 108. So you were on the right track and should have been patted if not slapped on the back!

    Here's a quick sketch of what I've learned over the years. Perhaps it will be helpful to you.

    After having followed a low-fat diet for years in order to stave off heart disease (or so I thought), I was diagnosed with T2D. It was quite a shock, to say the least....

    Fast forwarding, I have slugged it out through many variations of a reduced-carb eating in an effort to get off Metformin (and Imodium). None of them were successful.

    So my current goal is simply to get my A1c and fasting BG as low as possible while still saddled with the dynamic duo of Metformin/Imodium.

    Here's the part that bugs me the most - The information that's out there for us T2Ds is conflicting and often absolutely wrong in individual cases. Now, I realize that if every T2D in the country followed the advice of many health-care organizations, hospitals, etc., and reduced carb intake to around 30g per meal, the average A1c in America would fall.

    But that's no consolation to those of us who cannot get our BG down far enough on 100g of carbs a day! Even on 4x500mg of Metformin (and 8 Imodiums) per day, 100g of net carbs did not allow me to get my A1c under control. It was soooo frustrating!

    But there was hope. (It just took me a while to find it.)

    For carb-intolerant and insulin resistant T2Ds, I finally learned, after years of barking up the wrong trees, it can be necessary to:
    • reduce net carbs below 50g per day,
    • limit the total protein we eat (because our fickle bodies convert not only carbs but also protein to glucose as well, though not as quickly), and
    • reduce our total calories.
    Blecch!

    It sounds like no fun, but once I got into the habit, the diet was tolerable and the falling numbers were enough of a treat to keep me going. I figure that if any diet other than extremely low-carb is poison to my system, since I don't want to be poisoned, I'd better be thankful I finally found an acceptable way to modify my diet that doesn't create other health problems. I don't drink much beer, dessert wines, or root beer floats, but I do get to eat butter and heavy cream - yummmm!.

    (If you're curious, the low-carbers daily group has collected some great info in the LCD Launchpad and the group itself is full of smart people dealing with diabetes and all sorts of other health issues.)

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