Sunday, May 11, 2008

The Absolute Worst Thing About Diabetes

If someone were to come up and ask you what the absolute worst thing about having diabetes is, what would you tell them? Would it be the painful finger pricks and injections? Would it be the knowledge that you have to take insulin and/or medications every day for the rest of your life? Would it be the oft-restrictive diet plan, or maybe having to lose weight but finding it difficult? Maybe it would be panic about low or high blood sugars, especially during the night or at an important event.

For me, I've decided today, that for me, the absolute worst thing about having diabetes is having to deal with other health problems. I am not alone in that I have a pretty healthy fear of complications from diabetes, but it does not help when some members of your support system try to interpret your every ache and pain as D-related.

It's bad enough that my ankles swell on an almost daily basis, because others sometimes take notice. These people include my mom, who I know is constantly fretting about how it HAS to be my kidneys. I had a kidney scare back in late high school or early college, and it was definitely terrifying at the time, but I was put on ACE inhibitors, and my kidney tests have come out fine ever since. I am not 100% convinced that anything was wrong with my kidneys to start with--maybe it was a side effect of the antibiotics I was taking for my severe acne at the time. I am always worried that people see my swollen ankles and no longer see a twentysomething woman living the best life she can with diabetes. Suddenly I become that out-of-control girl who never cared about her health, that noncompliant diabetic who's going to lose a limb or an organ.

I feel like there are things wrong with me that no doctor ever takes the time to fully explain. I take medicine for tachycardia, but I am not sure if that's because my heart beats too fast or because it's arhythmic. No one ever explained to me if that was related to my diabetes or not, and it took Gary telling me that tachycardia is not typically something diabetes-related to ease my mind. For nearly a year, I thought my heart issues were my own fault for not having better control, because I didn't know any better.

I have an appointment with my endo this week, and I hope that I can sit down with her & explain everything that's wrong with me, and instead of just having her react to it, I want her to be proactive. I know she's a really cool lady, and I know she's a good listener, so I think something can work out. I just really don't know what to say, or how to say it without bursting into tears.

The absolute worst thing about diabetes is that some doctors don't necessarily see you as a person with a strange medical issue that's popped up. They see you as that diabetic with a bad A1C who OF COURSE is having health problems. Look. Don't f**king ignore my problems just because my A1C is 8.5. I still have other health problems that aren't related to the fact that I have type 1 diabetes. Oh, and if you work in an ER, don't tell me I have a UTI that must have flared really suddenly when the symptoms are then identical to the ruptured ovarian cyst I ended up with a month and a half later.

For a couple of years, I've been asked if I have PCOS, and I've asked the same of my doctors, who responded with, "Well, do you have regular periods? Yes? No, you probably don't have it." Yet I have the trademark insulin resistance and body type, as well as a family history of ovarian cysts. I am waiting to have a gynecologist appointment to tell me the truth.

I want every ache, every pain, every tingle, twitch, and twinge, every incident of my leg falling asleep to not be accompanied by my brain saying, "Oh no, Hannah! It's your diabetes complications! They're finally caught up with you!" as if they just magically, suddenly manifest from the sky like the horsemen of the Apocalypse.

Why all this angst? Why today? I sat on the floor at a friend's house yesterday, and my legs fell asleep. It happens. Whatever. I'll admit I was sitting at an odd angle on a hard floor. However, my left leg recovered, and my right leg, even after sleeping, still feels half asleep. WebMD has me convinced it's peripheral neuropathy, rheumatoid arthritis, a blood clot, Lupus and seven other rare disorders--all at the same time! (note: sarcasm, people. sarcasm.) But really, I don't quite know what's wrong, and I'm definitely worried about it. But if I need to call my doctor in the morning, I want things to be taken seriously, and I don't want it with a side lecture regarding the nature of my diabetes self-care.

Maybe I pinched a nerve. Maybe I do have a blood clot. Whatever it is, I just want to be taken care of and not scolded for all the things that could happen to me in the future. If those things aren't my problem NOW, why bother talking about them.

When something is wrong with me, please, by all means, help me fix it. Sometimes, you really need to ignore the elephant in the room. He might just be there because that's where he lives.

6 comments:

  1. Rachel @ TomT4:12 PM

    I haven't had health care professionals assume that anything is related to diabetes (yet), but I do it all the time.

    However, in relation to the other D... I have had painful ovulation for awhile (lasts for 3-5 days). When it first started (five years ago), I got all checked out with ultrasound and blood work. Nothing seemed wrong, so my PCP sent me to a GYN. He took down my history (again) and as soon as I mentioned I was on an anti-depressant, he pretty much shooed me away. I MUST be a hypochondriac, you know.

    I've been afraid to go back to a GYN even though it gets worse and worse every month.

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  2. Oh man, Hannah - been there done that, maybe still doing it.
    With db it is very easy to jump on every symptom. Pretty soon you find that it's even a little difficult to judge what is real and what isn't. It can get you feeling like a crazywoman if you let it. I was near the emotional breaking point when I turned 180 degrees and began to ignore everything, which was not wise either.
    If I recall, you were off to a pretty good start with the new endo. Please make her explain what is causing your problems and if there's anything further to be done about them.
    Has anyone ever offered you a diuretic for your ankles?

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  4. I can't stand the fact that everything is automatically assumed to be D-related ... as if all ailments are automatically associated with diabetes, even if they have no association whatsoever!

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  5. my mom has been the worst about this lately. every headache, not hungry in the morning, when my toes turned purple when i was outside and it was cold.. she's taken to saying, "is your diabetes acting up?"

    sometimes a cigar is just a cigar, sometimes a headache is just a headache.

    i say, "no mom, it's my sars. take three giant steps backward, please."

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  6. Hi,
    I am doc from India an Internist with some special interest in Diabetes.Your blog is illuminating to me.Yes we docs tend to blame everything on Diabetes in Diabetics.After seeing your blog and the comments I will try not too.

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