Hello all. I started a blog a few days ago about living with Type 1 Diabetes. Because it’s Diabetes Awareness month, I wanted to write about what it’s like to live with this disease and shed light on some of the not so nice things that we diabetics have to deal with on a daily basis.
I’d love some feedback. The Blind Leading the Blind « alexinatlanta
Thanks,
Alex
I’ll be perfectly honest: too much doom and gloom. While I certainly don’t expect (nor want to read) rainbows and unicorns, most people I know with Type 1 incorporate this extremely unwanted guest into their lives in a more “it is the major, relentless pain in the a$$ that it is” kind of way and continue living their lives to their particular fullest. And you are so very ANGRY! Believe me, I am angry, too, about how unfairly T1D plays. But I try not to let this anger consume me. Rather I try to channel that angry energy towards kicking T1Ds sorry butt into as much submission as possible one day at a time. Words of wisdom someone told me long ago:
Anger is an expensive emotion.
Having retinopathy is a complication that many of us fear. Our eyesight is so dear to us. I appreciate your writing about your experience but I also want to encourage you to look at your life with hope. You have come a long way, I suspect you have learned a lot about taking care of your diabetes. Despite this we all have risk of retinopathy and you have just run smack into it. But it doesn’t mean the end of the world. In the last decade there has been significant progress in treating retinopathy. I know the treatment can be a pain and be scary but retinopathy isn’t a non-stop train to vision loss. I do hope that some of our members that have gone through this will chime in with their stories. And in the end, we have to remember that we are strong and we are resilient. We can deal with things and overcome them. I would encourage you to reach out to others for support and help yourself to become strong to overcome this bump in the road.
hi @Alex20 I read your blog and it broke my heart to see how you were treated and the lack of support at such an emotional, completely scary time. I know, I have retinopathy too. Almost 30 years ago, I had my first hemorrhage for PDR, Peripheral Diabetic Retinopathy. The same day, I had my first laser treatment. In those days, there weren’t any shots and it was hard to endure the lasers w no anesthetic. I’m lucky I had very kind and competent retina doctors and a loving and supportive husband over the course of 11 treatments in both eyes. The periphery of both my retinas are what they call “burned out”. I actually just had my annual check up yesterday with my current retina doctor, and his comment was “it’s all quiet in there”. he’s told me before he doesn’t see anything happening as long as I can keep my a1c in the 6s or close to the 6s. I can still drive, sew, and generally get around. I do trip over things a lot, but that’s the peripheral vision they had to take out. So don’t lose hope.
I’m concerned they allowed you to drive yourself to the appointment. If I lived in Atlanta, I’d be over to your house in a heartbeat to take you myself. What is happening next for you?
BIG BIG HUGS
Thanks for your raw honesty. Complications are not an easy to talk about. It brings out so many emotions (Fear, Anger, etc.). Until you been in the Doctors office getting the diagnosis it is hard to understand. I wish you the best as you move forward.
I see no doom and gloom in your blog post. I see anxiety and fear which are quite understandable in your situation, I understand from a very personal level. In the last year I experienced my first eye complication, diabetic macular edema is what my doctor called it. Because of this I underwent a series of eye injections like what you described.
Not only was I distressed about the thought of vision loss I was distressed also because the remedy is getting injected in the eye. The thought of it is enough to put one’s anxiety level into overdrive. Fear of the future and fear of the procedure is a double whammy of the anxiety factor.
My doctor was a bit more sensitive in giving injections, I never saw the needle . It is disturbing that your doctor seemed to have no empathy for what you were feeling. I am glad that you have switched to another doctor, You deserved better than you were given.
I wish the best for you as you deal with this problem. I fully understand what you are going through.
You wrote well about the raw emotion you experienced with this scary complication and treatment. I’m not afraid of needles but your description makes me wonder how I would feel if it were me.
The best doctors are those who realize that we humans come as a complete package, body + brain + emotions. To ignore any of those and treat you just another procedure to get done before seeing another client is poor practice. I understand that clinicians need to emotionally distance themselves from their patients or they’d have a hard time sustaining their practice. They still need to grant some deference and respect that your emotions need to be recognized. If the doc can’t do that then s/he needs to instill that in his staff.
I wish you the best of luck!
I don’t have the words to express my loathing and revulsion at the way that doctor treated you. Doctors are just human beings, of course, and they come in all types and varieties ranging from smart to dumb and empathetic to insensitive. But that guy was way outside the bell curve in view of your obvious distress. I wouldn’t have gone back there, either. In fact I would have reported him, or possibly worse.
On the positive side, Gary and Brian are quite correct: as with everything concerning diabetes, the treatment options are improving almost daily. It’s not a hopeless, bottomless pit. I’m not minimizing anything about your situation; any diabetic knows how deadly serious this stuff is. But it’s no longer the binary choice it once was.
I have a bit of familiarity with this kind of situation, though not to anything like the degree you do: my wife, who isn’t even diabetic, has suffered some permanent vision loss due to plain ordinary old glaucoma. Fortunately, it’s arrested and isn’t likely to grow worse–that’s the silver lining.
To wrap it up, I’m glad you found this caring community. There’s nothing like it anywhere that I’ve ever seen. Please stay in touch and let us know how you’re doing.