Change the World – #dBlogWeek Day 1

May 12, 2014

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Today’s topic is Change the World.

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

This prompt is a pretty easy way for me to get back into the bloggy groove after almost exactly 1 year (gasp!). Yes, it’s been while. Hi, how have you been? I just went to the endo today. HbA1c was 6.9, thanks. I thought it was going to be a lot higher – go figure. I’m still not thrilled with what feels like a lot of highs, and I’ve been SWAGging my way through far too many carbs without even thinking about them (duh), but I did go for 2 little walks today. Progress. Oh, and I had surgery last month. Recovery’s been slow but just fine.

But let’s get moving on this #diabetesblogweek prompt!

3 major diabetes issues come to mind right away that I’d love to see change significantly: the ease with which anyone with diabetes can find trained, appropriate, compassionate, supportive medical care for their diabetes; the ease with which anyone with diabetes can access and use their own data, whether the data is from a lab, blood glucose meter, insulin pump, continuous glucose meter, or other piece of technology; and the ease with which anyone with diabetes can find and spend time with others who are in the same kind of boat.

I feel passionately that it should be easy to find a doctor or certified diabetes educator (CDE) who is well-versed in current research about recent technological and treatment options that may be appropriate for patients depending on the various contexts of their lives. It should be easy to find providers who are compassionate for and with us – not sympathetic, not pity or shame for us, but providers who will join WITH us and ask us “how can I support you in getting what you need for your diabetes?” This should be the gold standard, not the exception. In my experience, it feels like the exception – I’ve had several Dr. WonderfulEndos, for sure, but I’ve also had the Dr. Crappys as well – and unfortunately I’ve heard about them from others, too.

Just as much as I need medical providers who are well-trained about diabetes in both brain and heart, I also need access to my data – the numbers describing the vital diabetes and -related functions going on in my body – in a format and layout that is easy and useful for me to understand and make decisions. Without that, I can’t make choices that will be best for me. Any talk of making the “right” choice or the “best” choice, not mention the “healthy” choice, is incomplete without knowing my blood sugar, the direction it’s trending, how much insulin I have on board, how many carbs I ate in what time span…and so on…

Finally, I’m passionate about diabetes camp. I was diagnosed at age 7, attended camp from age 8-14, and went to diabetes teen retreat from age 15-17. I was lucky enough to go back and be a junior counselor, and then a counselor, at diabetes camp from when I was 18-22. For 14 summers, for about 1 week, I got to feel completely normal. There is no way to explain it to someone who doesn’t get it, but I will say it’s the biggest RELIEF ever. Like a giant boulder suddenly lifted off my shoulders and vanished for a week, that I didn’t realize was there the other 51 weeks out of the year until it was gone.

After grown-up responsibilities took over, and I moved around and couldn’t get back to my beloved diabetes camp but didn’t know where to find another, and years went by without it…I realized how much I missed the d-camp experience. I also realized how much I really needed a grown-up d-camp experience. I’d try to get it with support groups and meetups, which are wonderful, but not quite the same.

Then.

This.

Kind of like diabetes camp for grown-ups.

#BAMThereitis. You’re welcome.

Happy Diabetes Blog Week, everybody!

 

***Here’s the Change the World – Monday 5/12 Link List.


30 things about my invisible chronic illness

September 18, 2011

I thought I’d use this meme to get back on that blogging horse. These are my 30 things, in honor of National Chronic Invisible Illness week.

1. The illness I live with is: type 1 diabetes

2. I was diagnosed with it in the year: 1980–on Friday the 13th of June.

3. But I had symptoms since: a few months before. My mom took me to the doctor, who said it was just the flu. Maybe that’s what kicked my immune system into overdrive, but I drank and peed gallons of water and lost tons of weight and had fruity-smelling breath and slept all. the. time. for months before being diagnosed in the ER and going into a ketoacidotic coma for 4 days.

4. The biggest adjustment I’ve had to make is: having an uninvited, unwanted entity present in my life every second of every day, and having to pay attention to it all of those seconds.

5. Most people assume: 1. that I can’t eat any sugar 2. that I “got” type1D because I ate too much sugar or weighed too much 3. that my pump is a pager 4. that my CGM (continuous glucose monitor) is an oddly misshapen cell phone 5. that I’m going to have to have my feet amputated…and there are so many more assumptions.

6. The hardest part about mornings are: feeling like absolute crap if my blood sugar is higher than 150 or lower than 70, and then the extra time it takes to address either one of those annoyances when I really don’t have time in the morning agenda for any “extra” things. Being late for work or weekend plans if I have to recover from either being high or low in the morning sucks.

7. My favorite medical TV show is: I really loved House for a while. Medical mysteries are fun if they’re not my own.

8. A gadget I couldn’t live without is: the duo of my blood glucose meter, which I use to check my blood sugar about 12-15 x/day, and my insulin infusion pump, filled with Novolog insulin. My life on MDI (multiple daily injections) was really, super terrible for many years until I tried the pump. My body seems to only want to notice short-acting insulin, and basically ignores any medium- or longer-acting insulin.

9. The hardest part about nights are: if/when my Dexcom (CGM) just. keeps. screaming. or. vibrating. every. hour. or. more. throughout the night, due to blood sugars that are riding either higher or lower than the set maximum and minimum on the device. Good times.

10. Each day I take 3 pills (lo-dose aspirin, generic allergy med, and an anti-inflammatory called meloxicam),  3 vitamins (a multi- and 2 Vitamin D supplements), and infuse about 50-60 units of insulin into the layer of fat below my skin throughout the day. 

11. Regarding alternative treatments I: think they can add a lot to one’s overall wellness and health management, but they aren’t treatment for type1D. Nothing is going to kick my pancreas into making insulin again.

12. If I had to choose between an invisible illness or visible I would choose: there’s really no good answer to this question.

13. Regarding working and career: I’m for it. With type1D, I’m insanely grateful for the opportunity to get medical insurance through my employer. The D hasn’t given me too many problems with regard to my work, unless my blood sugar is low and I have to read or write or speak or think. Then I have to wait 15-20 minutes so that I can see okay and my brain can make sense of what I’m reading.

14. People (without type1D) would be surprised to know: how difficult, and how isolating, type1D can be. For many years I tried to hide and ignore how much space taking care of t1D takes in my life.

15. The hardest thing to accept about my new reality has been: it’s been 31 years now, so the reality isn’t new. Back then, it was hard for me to accept that I wasn’t like the other 7 years olds around me, and that I was going to have to carry this baggage (literally and figuratively) for the rest of my life. Now, the hardest thing to accept about my reality is that it impacts those who love me, and that there is never a break from it ever.

16. Something I never thought I could do with this illness that I did was: ? I really haven’t considered anything that I’ve done, or haven’t done, in context of having type1D. I don’t want to climb Mount Everest or run with the bulls, or skydive, but if I wanted to do those things, I’d figure out how to do them with t1D.

17. The commercials about this illness: aren’t about the kind of diabetes I have.

18. Something I really miss doing since I was diagnosed is: leave the house without a ton of freaking supplies (juice, glucose tabs, blood glucose meter, finger poker, canister of test strips, insulin pen, insulin bottle, pump tubing, pump reservoir, alcohol swabs, CGM sensor, lancets, syringes) in my purse, in my work bag, in the car, in a fanny pack…to just leave the house with only keys and ID is but a dream.

19. It was really hard to have to give up: eating without shame; eating without calculating carbs and insulin and exercise and stress and…

20. A new hobby I have taken up since my diagnosis is: reading d-blogs; tweeting w/ the DOC (diabetes online community); blogging my own d-blog; taking care of myself and my D.

21. If I could have one day of feeling normal again I would: run, run, run without worrying about going low. take several “free” showers (no pump sites or CGM sensors). go out and make someone else drive so I wouldn’t even have to carry keys/ID. buy and wear something that actually fits my body, something with no pockets.

22. My illness has taught me: how to take care of myself. how to put my own needs first. that I’m actually not in control of most things in my life. that numbers are just numbers, they don’t hold a value of my worth as a type1D, or as a human. how to ask for help. how to advocate for myself with medical providers. how to advocate for others. an understanding of difference, in others and myself, whether with regard to invisible illness or many other ways that people are different and treated or made to feel badly because of that difference.

23. Want to know a secret? One thing people say that gets under my skin is: “Are you supposed to eat that?” or “My (family member) had diabetes, and lost her/his toes/foot/leg/vision/nerves/etc.” Don’t say those things to people with t1D. Just don’t.

24. But I love it when people: ask intelligent questions that let me know that they are interested, and that they know there are things they don’t know about t1D

25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming, just keep swimming“~~Dori, in Finding Nemo. “Steady on“~~song (one of my very favorites) by Storyhill. “I’m on the edge of glory”~~Lady Gaga.

26. When someone is diagnosed I’d like to tell them: Welcome to the club that no one wants to be in, but most of us here are pretty darn cool folks. Simply because all of our pancreata decided to konk out, we’ve got each others’ backs–which is a pretty incredible thing. You will be okay, even though it may not feel like it. You are not alone, ever. You can do this.

27. Something that has surprised me about living with an illness is: As much as I hate this, I’m pretty good at it. I’m organized, (usually) prepared, and I like to research and learn new things. I like to solve problems and find useful resources. I like technology that’s useful and easy to use.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me an iced drink, sit with me and let me feel what I was feeling.

29. I’m involved with Invisible Illness Week because: I have type 1 diabetes, and I love memes.

30. The fact that you read this list makes me feel: thankful.


a focus on good D things

May 12, 2011

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Believe it or don’t, but just  like Karen’s blog header says, life with diabetes isn’t all bad. Seriously. The D-Blog Week topic for the day involves focusing on good things diabetes has brought us. I don’t like to give D a whole ton of credit, but I do like to look at the brighter side. So let’s get into it, shall we?

Because of type 1 diabetes, I have:

– Met SO MANY truly amazing people, including: The girls from my Cottontail Cabin at Camp Diamont, Montana’s summer camp for kids with diabetes that I attended from 8 to 14 years old! My several friends from Camp Diamont who came back as junior and senior counselors with me: Y’all are such superstars and I’m glad to still know you and have you in my life (thank you Facebook and LinkedIn!). My dear friend E, my first friend with type 2 diabetes who was a real love and whom I miss so much.

– Joined my life with a partner who loves me for who I am–D included. She knows all that my life is, and accepts me with it. There’s no hiding it, even though I didn’t take very good care of myself the first 15 years we were together.

– Become an assertive advocate for myself, family members, friends, random strangers with regard to medical care providers. (Insurance companies are another matter–getting something in the mail from insurance gives me a panic attack before I even open it.) BUT with medical care, I’m your go-to person. I can stay calm, ask questions based on research, say things like “What does the most current literature say about that?” “What kind of results can be expected?” and “How can I make _____work in my life?” And if I’m not satisfied with the answers I hear, I feel empowered to break up with the Dr. Crappys and find another provider. It might not be easy, but I’ll find one who will treat me with current, peer-reviewed knowledge and expertise and respect about successfully managing type 1 diabetes.

– Learned how to take care of myself, and to problem-solve for whatever crisis comes my way. Being prepared is one thing, and dealing with whatever comes along is another. Cooked your one bottle of insulin in a car in 90 degree heat? Been there. Lost insurance coverage? Yep, done that too. Left the house without insulin pump, whether for hours or days? Word. BGs go high immediately after exercise at certain times of day, but go way low during exercise at other times? Still figuring that out, but I *will* prevail (if you’ve dealt with this issue too, please comment or email!) D has made me self-reliant, confident, knowledgeable, and creative.

– Found that I have a passion and talent for promoting public health in ways that don’t demand a lot from individuals: Policies and systems that help make healthy behaviors easy for communities and populations to choose. Because the environment and culture influences so many of my decisions regarding diabetes management, from food and exercise to medical and life insurance coverage and beyond, I understand. It would be a lot easier if our environments supported us in managing our diabetes, rather than demanding we be strong and independent and go against the grain to make the best choices for our health. It just shouldn’t be this hard, and I like to work to change that.

– Found the DOC (Diabetes Online Community), hundreds of folks with D, parents of children with D, and loved ones of kids and adults with D. Can I just say that finding the DOC was truly a lifesaver for me? That’s the truth. I don’t think I would ever have been able to start to change so many of my own behaviors without having the security blanket and the supportive push into the positive pool of the DOC. Everyone who blogs, or tweets, or is on Facebook, with D, is sharing their piece of the entire global d-mosaic with us, and making all of our lives better. Together. Some days I wish I could just read blogs and tweet all the time…but honestly, I’d rather meet everyone at, say, a d-prom IRL.

-Knowledge that I can do this, it is possible and I won’t be struck out of the game. Thirty years in, I’m still here. That’s a good thing.


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