I often struggle to explain my “medical stuff” to people. Not that I go around dumping the whole morbid story on everyone I meet. But for those I am around often, they kinda need to know I have diabetes. For others, it just comes up in conversation.
I don’t mind telling people and I appreciate folks who want to know and will allow me to educate them about diabetes. But it can be really hard to explain. It’s one of those things you can’t actually understand unless you’ve dealt with it. Sometimes it just takes having someone who knows explain it to them. Other people just won’t ever understand because they don’t have the ability to sympathize or put themselves in someone else’s shoes.
There are also the times you have to go to a new doctor. Then dumping the whole mess is pretty crucial, but there’s no real rhyme or reason to it so it comes out a big, jumbled pile of bits and pieces of my medical history. I start telling them one thing that relates to the reason I have come to them in the first place (ie: a sinus infection, etc) then they’ll ask another question or it will lead to needing to explain background. It’s just hard to relate 40-plus years of medical history in a few minutes, no matter how much training the “doctor” has, it just doesn’t happen quickly or easily.
Let me stick an aside in here for anyone who happens to read this and has an inkling of what this is like, if you have a good way of doing this, could you please share? I’ve thought of trying to list everything on paper, but it’s not easy, especially at this point when I can’t even remember many of the doctors’ names or what they tested or diagnosed. I can’t remember what year things happened in unless it was major like the 2 weeks in the hospital with Stevens-Johnson Syndrome in 1994. That I can remember since I spent another 2 years recovering from it. But the many, MANY times I’ve been to an allergist or ENT for ear and sinus infections and the various tests they ran and treatments they prescribed? Um, no. Sorry. My mind can’t hang onto that much stuff!
So yeah, in case I’ve never said before, I hate going to new doctors. I feel like I need a moving van to haul all my medical ‘baggage’ into the exam room. I have felt like the doctor was thinking, “What the heck? How many different diseases or medical procedures can one person have?” or “She has GOT to be making this up.” or “This lady and her ton of medical problems are more than I want to deal with.” Now, perhaps NO doctor has ever had those thoughts about me, however, if I were a betting person, I’d bet you that some of them did.
Does that make me paranoid? Maybe, but here’s the thing that you won’t be able to understand if you don’t have a chronic auto-immune disease…going to a doctor, and I’m talking a general practitioner not a specialist, with more than a couple different complaints or health issues is like being an alien. Many doctors don’t want to deal with you. You are too complicated. Others immediately decide that you are somehow non-compliant, in other words, you’re not doing all you can to take care of yourself. You aren’t “trying hard enough”.
For instance, this new doc I went to see this week… well, she’s an ARNP but I really liked her. My mom and my youngest son had recommended her to me because she was so thorough and took her time with them. She did the same with me, but because I was there for a persistent cough, she started with that then started looking through the lab work I had in August. She was telling me everything looked good and asking me if I was on any meds for cholesterol since those labs were good, etc.. then she flipped a page and asked me if I was taking Metformin. Of course, I was puzzled about why she’d ask me if I was taking an oral medication for Type 2 diabetes when I’m on insulin and have Type 1 diabetes. I said no, thinking in the back of my mind that maybe there’s some other use for Metformin that she was going to suggest. Then she mentioned that I should be on it to help with my sugars. That’s when it dawned on me that she didn’t realize so I said, “That’s why I take insulin.”
She flipped another couple pages and then began to profusely apologize. She is a really great, down-to-earth person who has a thick “southern” accent and talks really fast because, or so it seemed to me, her mind is going so fast her mouth can’t quite keep up. *smile* She made a “total fail” comment and just kept apologizing til I said, “Don’t worry about it. I come with a lot of baggage to go through.” and she said, “Well I sure appreciate all the grace you are giving me.”
However, when she then backed up to my lab work and began to retract all the “good job” comments she’d made to me just seconds ago, I felt myself getting really frustrated. And don’t get me wrong, I STILL really like this lady. I think she’s on the right track, is very thorough and wants to help me feel better and be healthier. But this is one of those things that has always just ticked me off so bad. Where she’d thought I had good lab results because they were all within normal range like for cholesterol and blood pressure and such…those were “normal people” parameters. Not diabetic ones. No, a diabetic has to have even lower levels, even better “scores” on these tests.
Yes, I have to test my blood sugar multiple times a day. I have to take shots and count every carbohydrate that I put in my mouth and dose medication for them. I can deal with that. But tell me that I have to have a cholesterol level that is 10-30 points lower than everyone else? That runs all over me and frustrates me more than the unfairness of my daily must-do’s to live.
Is that weird? Am I the only T1D who gets madder than a wet hen about this kind of thing? I dunno, but I left there feeling so conflicted.
This doc is sending me to an allergist she trusts to reevaluate my allergies and asthma issues. She suggested I see my chiropractor to help with the tightness (that she noticed while feeling my lymph nodes, by the way) in my neck and shoulders. She also suggested a $60/hour massage therapist…not gonna be affording that any time soon. When she looked at my feet, which many doctors don’t even do, she got pretty disturbed and told me I needed to wear tennis shoes and not my comfy Chacos and that I needed to go to a podiatrist and “get that skin off there”. I didn’t tell her that what she was seeing was much better than normal! My feet are always really dry with thick callouses and crevasses/folds. And I also didn’t tell her I’ve worn nothing but my Chacos all summer long and I’m not sure what I’ll wear when it gets too cold for them because they are THE MOST comfy shoes I’ve had in years! I’ve worn them hiking through the woods and in the river while kayaking. They are my favorites and I’m not giving them up for some less-than-comfy tennis shoes. So there.
Actually, her response to my diabetes was pretty much the usual for a GP who doesn’t deal solely with diabetics. The idea that all my labs and sugars should be perfect and that I should always maintain a perfect A1c is unrealistic at best and I’ll let her in on that when I go back in two weeks. Is it possible to attain perfect numbers? Yes, it is. Is it feasible to maintain them always? Nope.
Okay, so this has been a long rambly post about how I feel living my life with type 1 diabetes and all its lovely friends…Graves Disease, Neuropathy, Kidney Damage, Early Cataracts, Retina Degeneration. Those are the just a few of the ones who have already showed up to the party.
I don’t want pity. But understanding? That I will take with gusto and gratitude.