Differently-Abled: Day 125: February 5th, 2008

---------WARNING: In sad mood-rant inevitable----------------------------

I don't like to consider myself unhealthy or differently-abled, but I am. I'm not in a wheelchair and I'm not really physically or cognitively impaired (save for those all to regular hypo/hyperglycemic moments when my body betrays me), but I'm not in the norm, either.

Today I'm just really sick of being lumped in with all diabetics, specifically type 2's. I mean no disrespect to type 2's, but it's a totally different reality and disease and everyone around me, upon hearing that I'm diabetic, goes off about what they know about their own or others type 2 diabetes.

My aunt and grandma are type 2 and they NEVER test their bloodsugar and they aren't on insulin, take one pill a day, never exercise, eat sweets daily, consume what they want (more or less), and their A1C's are still way under mine. My grandma just did a victory dance today because she got her A1C back and it was 6.8. I love my grandma and I don't want anything bad to happen to her, but I'm sorry--she didn't "earn" that victory.

I work hard but seem to be brushed off with "lower your A1C" and "get your weight down" and while of course that is what needs to be done, no one sees the daily grind and the ways I work my ass off to be as healthy as I am. It just gets to me because my other friends who are type 2 are the same way--they don't test and because their bodies still produce insulin, they're better off than I am glucose level wise, despite my never-ending hard work managing my disease. And while I don't wish this on anyone and am glad they aren't burdened in the same way, I don't have that luxury, and I don't see our diseases as similar in many ways at all.

I test 10 times a day and take 6-7 shots a day and watch what I eat, exercise while managing bloodsugar levels and fret and pre-plan and calculate and carb count and all the rest and I STILL have an A1C of 7.2 and I'm STILL spending this afternoon at the Eye Institute talking to my doc about the newly discovered retinopathy in my eyes.

I don't want to be a whiner, and I don't wan to be a victim. It's just that this morning, after going to bed with a bloodsugar of 308 and waking up with one of 142 after no correction nor food (I was just curious what my body would do since I am having all these lows overnight for some reason I do not yet know), I am tired. I am tired of playing doctor, life coach, pancreas, cheerleader, psychologist, trainer and friend to myself. I really do wish type 1 diabetes had a different name because the reality of this disease compared with type 2 is usually very, very different.

------------End Rant------------------------

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Comments

Jillian919 says:

Oh Amylia! I just want to give you a hug! Everything you said is what I feel on a daily basis. I want a different name, and really I just want a cure so I don't have to explain myself or educate. Not to take away from the type 2 diabetics who actually do what they can to control their disease and those who couldn't have prevented it. But type 1 diabetes is a whole different ball game, shoot it's on it's own planet. Swallowing a pill does not hold a candle to playing the role of a part of your body that completely doesn't work. It's all just so complicated.

If I offend any type 2's out there, I just need to say that sometimes it's just hard to be PC when I'm upset about the problem with distinction and the way that I believe type 1 diabetes is so much more all encompassing than type 2.
Posted 23 months ago. ( permalink )

Maisy says:

Amylia I really feel for you and I know where you're coming from. I'm having just the same struggles with hypos and highs and have never had an Ac1 below 7.2 despite a daily (and increasingly obsessive) struggle to achieve it.

I really admire what you did, following your dream and going to Taiwan (despite the difficulties that diabetes imposes). You may not feel it at present but you're quite an inspiration!
Posted 23 months ago. ( permalink )

Da.sein says:

Thank you Jillian and Maisy. I'm just having a weepy day. I appreciate you extending your thoughts and support.

((((hugs))))
Posted 23 months ago. ( permalink )

lovelylilsmartie says:

(((((AMYLIA))))) I hope you know we can relate. I was sitting here just nodding my head up and down. I know exactly how you feel.
Posted 23 months ago. ( permalink )

jamieschneider says:

WOW, you are so right on with this gals! I feel the same way about being lumped into the pool of diabetics of all types. It really is a different disease, and like you I wish it were called something else, if for no other reason than people understanding that what we do every day is quite different. I see my grandfather reaching out saying he has diabetes too, but I'm confident he has no idea what a day with diabetes is like for me. I can't really get mad, and I try to explain the difference to everyone that assimilates, but it's often overlooked, and in the end I get lumped into the same club. Like you, it's not that I'm taking anything away from the struggles Type 2's go through, but it really isn't the same - and it's a shame that there is little understanding of this out there. This is a bit over-dramatic, but I liken it to a cancer patient receiveing chemo and marrow transplants being lumped into the same "sickie" category as someone popping aspirin for headaches...

*MY RANT IS OVER TOO* (and really I don't mean to offend, but have the same frustration raised by Amylia on a pretty regular basis)
Posted 23 months ago. ( permalink )

kkonmymind says:

(((amylia)))

(I wish I could give you a real hug)
Posted 23 months ago. ( permalink )

stinky_harriet says:

I think that many Type 1s often feel the same way. I wouldn't wish diabetes of any type on anyone but sometimes I do find myself thinking that so many Type 2s have brought it upon themselves, while I had absolutely no way of preventing what happened to me. Still, I'm not sure I'd ever choose Type 2 over Type 1 (of course I'd choose neither, if I was able to) because at least I can fine tune my therapy and have more freedom with what I eat. Severe insulin resistance must really suck and pills often just can't do the job properly.

But, yeah, I don't like it when people assume I'm Type 2, taking a pill and could "cure" myself by losing weight and not eating sweets.
Posted 23 months ago. ( permalink )

jyyne_2000 says:

Awwww. *hugs* I totally agree with everything you say! I work with someone who has type 2 and it is a totally different disease and a different experience. It's not just the shots, either, it's the entire experience. She only tests occasionally at home, watches food somewhat but also eats what she wants, doesn't have to worry about lows at all and never complains about going high. She was shocked once when I told her my blood sugar was 23 (400+ mg/dl) from forgetting a shot at breakfast. I'm not sure if she takes pills, but she doesn't take insulin.

She doesn't have to test multiple times a day at work. She doesn't have to worry about going low while trying to teach, or spending all afternoon fighting to get a high blood sugar down. She doesn't have to deal with insulin doses that work for a few days or weeks before needing adjusting again because of hormones. She begins eating with everyone else rather than sitting and studying nutrition labels and testing and programming a pump. She has probably never had a night's sleep interrupted (sometimes multiple times, as happened last night) by an alarming pump, a low blood sugar, or an alarm clock set to go off at 3:00 to do a middle-of-the-night check.

I don't want to minimize the seriousness of type 2 or say that it's easy, but it's a totally different ball game. I see so many type 2s posting on various forums calling numbers "high" that are within my target range, or complaining about their A1c being 6.5 when my lowest-ever is about that and I have never approached the non-diabetic range.

I have hypertension and have made lifestyle changes (more exercise, losing weight, cut down on caffeine and unhealthy foods, take medication, monitor my BP at home), and I have to say that it's easy when I compare it to the constant, 24/7 vigilance and monitoring and adjusting and guessing and predicting and reacting that comes with type 1 diabetes. It's not that hypertension isn't serious or that it's no big deal, it's just very, very different from type 1 diabetes, and I imagine that having type 2 is somewhat similar to hypertension for most people. I wish the two types of diabetes had different names, were named after the disease rather than just a symptom they happen to share.

Anyway, huge comment over! I did a picture expressing a similar frustration to yours a few weeks ago.
Posted 23 months ago. ( permalink )

handpainter says:

As a type 2 I totally agree with what you are saying!
I was completly ignorant about Diabeties of any sort.
Then I found out I felt so icky because of mine, now that I know some Type 1s I wonder why we are called type 1 and type 2, they are so different.

I do check my blood many times a day, but it won't mean a trip to the hospital if I miss it. And I do get nasty highs, but thankfully I consider a low 80.
And for me a low isn't terrible, I cannot say how very much I apreciate that!
The idea of eating anything I want is intriguing but impossible.
There is not much I can do about a high.

For me diab is managable and fairly predictiable -usually. I think as a epileptic it is easier cause I has vast experience at controling a chronic illness. I know a lot of it is that I am still producing some insulin.

I am so sorry you are feling like this today and mostly so sorry about this retinopathy!
I promise I will never tell you to lose weight OR drop you A1C, like duh, you aren't trying to do that!
How annoying.
Thanks for ranting about this!!
Posted 23 months ago. ( permalink )

NaomiPoet says:

Every day we wake up and do the best we can with what we've got. It's all we can do. That's good enough, and don't let anyone else tell you otherwise!! People who don't live with T1 inside them don't get it.

I don't get it. I stand outside, watching Daniel, asking how he feels and offering advice. As close as I am to him, I can't "get it." I can only support him. Maybe at some point he will push that support away because it will be too stifling or uninformed or off the mark. But it is all I can do.

(((((hugs))))) to you, Amylia.
Posted 23 months ago. ( permalink )

Empire Creative says:

Amylia, your on the money mate. I feel the same way about the type 2/ type 1 thing. much love to ya!
Posted 23 months ago. ( permalink )

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