Day 5: AWEsome Things

Short and Sweet:

I’ve become a more understanding person, a nicer person. I’ve become more accepting. I’ve appreciated more…people, nature, everything. There’s nothing to say some other event wouldn’t have taught me the same. If I didn’t have diabetes, after being diagnosed with Crohn’s disease last Fall I’m sure some of those traits would have been developed. Chronic conditions change people; some become bitter and some change for the better.

Diabetes was my springboard into social networking. Until recently most of my online activities and interactions have been diabetes/health/Crohn’s related. Diabetes allowed me to become part of an amazing family

Day 4: Ten Things I Hate About You, Diabetes

In no particular order:

10 – Carrying a Purse! Before diabetes I NEVER carried a purse. My back pocket served as my purse. Unfortunately my back pocket is not large enough to carry a meter, insulin, symlin & emergency sugar…I now carry a huge bag. I guess I’ll always have room now?

9 – Math: I love math and numbers. But I do not love its constant presence in my head. There’s a number attached to everything it seems and they’re always running through my brain.

8 – Having an Eating Disorder: I swear I feel like I have one. I feel like I obsess over food and meals. Factoring how Crohn’s friendly one food is and making sure it’s not TOO terrible on the diabetes side of things. I think food may be on my brain just as much as numbers…food is ever present. It’s incredibly irritating.

7 – Being Bionic Woman: I LOVE my pump and I’d have a TERRIBLE A1c if didn’t have my Dexcom. It also seems I need a phone. And my meter is never too far out of reach. THEN there are all the normal gadgets in the world: phones, people, other people’s gadgets. One thing beeps or vibrates and I go through all my devices to figure out which one is bugging me. It can be incredibly overwhelming. It’s worst when I’m watching TV, I don’t know what it is about the remote but it just ends up being WAY too much for me to handle. I almost always end up flustered. Come to thing of it, this may be why I no longer watch much TV…I’m usually in a bar or on my computer when I watch.

6 – Attentiveness: It’s really a good thing, but it just can be so damn overwhelming! I check my Dexcom ALL the time, I give myself insulin all the time, I examine every food I put in my mouth…or think about putting in my mouth. Without diabetes I could eat a pretzel and just eat a pretzel, now it’s all about ingredients and carb counts.

5 – Time: I wish I could say managing diabetes is a big waste of time. It’s certainly time I wish I didn’t have to dedicate to a stupid disease. But, it’s my livelihood; people say they don’t understand how I do it…do I have another choice? I am convinced I’d have SO much more time without diabetes; it’s a whole other job…one that doesn’t obey US and state labor laws.

4 – DOC: Don’t get me wrong, I LOVE the DOC. You keep me sane. You are made up of amazing people. I have made some AWEsome friends due to our diabetes connection, and I’m sure we wouldn’t have met otherwise. I hate two things about the DOC. 1 – diabetes isn’t all that common in the “real world” so most of us have some pretty significant geographical distances to cross in order to see each other. It sucks. 2 – Your closest friends end up being on the opposite side of the country. People want to spend time with others who understand them, so DOCers become super close. I find it’s easy to become so focused on the DOC, who are amAzing, and neglect your personal life outside of a computer. I wish I had more friends that weren’t online.

3 – Insulin: The jerk makes me gain weight. If I lose weight it makes me nearly too low to function until I find the perfect changes in my rates. If I gain weight I suddenly have to change the rates. AND I hate my body can’t make it on its own.

2 – Types: I HATE the misconceptions and assumptions people make. Type 2 is different from Type 1, which is different from 1.5. I know it’s hard to educate society on something that’s not the most prevalent in the country. And I know it’s hard to educate society on a “type” that fewer deal with…but I SO wish there had been some specification when all the diabetes awareness/prevention collateral came out. I also wish they had different names…There are two types of Inflammatory Bowel Disease (IBD): Crohn’s disease and ulcerative colitis. Why couldn’t we have done something like that?!

1 – Fear: I hate that going to bed makes me nervous. I hate that one simple slip up could kill me. I hate the fear that comes every morning and afternoon…and any other time I open my mouth to eat…what if it screws up my sugars and I can’t perform well at work. Fear I fall asleep and don’t wake up and my family freezes and doesn’t know what to do. Fear of not having my needed supplies. Fear of my sites being ripped out and squirting blood all over. Fear of making someone else uncomfortable. Maybe it’s not fear as much as an anxiety I feel nearly all day.

So there you have it…I may have more, but these were the first 10 that popped in my head.

Day 3: Diabetes Bloopers

In my early pump days I was not incredibly “with it”…

It was right after I had gotten my very first pump, I believe my first or second day. It was a MiniMed Paradigm 715…NOT waterproof. It was April, the only time you can lay out in the sun, by the pool, in Phoenix for any length of time. I was on the phone with a friend from California and wasn’t really thinking. I set my towel down on one of the lounge chairs, stayed on the phone and walked into the pool. About 20mins after wading my phone conversation was coming to an end, as was my entertainment in the pool. I took two steps up the stairs and realized my pump was still attached! Then I was running high, and there were water droplets in the see-through area. I called Medtronic and they sent me a pump the very next day! I felt like such a moron!

I had just moved in with a new roommate, I was rushing out the door to get to my night shift…a VERY busy Friday night. I took a shower, had removed my pump (I never made a water mistake again with my good old MM…unless you count sweat, but that’s a diff story) and rushed out the door. I get to work get all the workers working in the right places…and realize my pump is not attached!!! In traffic, on a Friday night, it took about 40mins to get to my work. It was NOT a convenient trip to make. My brand new roommate, and now best friend, drove up and gave it to me. I don’t know what I would have done without her help! My boss would have killed me!

Day 2: Letter Writing Day

Dear Endocrinologits of Years Past,

My very first, you pissed me off. Really, you terrified me, but had I known what I know now I would have been livid. Granted, you had to deal with the crazy medical outlook of my mother. Yet you still called me and made ME cry. I was the patient, I was scared and it was ME who had to take a crash course in T1 diabetes. I wish you would have helped ME…despite the irritation and distraction of my mother.

Endo #2 – you diagnosed me in the ICU…or maybe it was the ER, I wasn’t conscious at the time. Originally I was very fond of you. You were former partners with Endo #1 and highly recommended him, yet I was willing to overlook my disastrous experience. Still new at diabetes and having no support at home as a teenager meant I really needed some handholding. I didn’t get any from you. However, the diabetes educator you referred me to was wonderful! She encouraged me to move to a healthier living environment. She taught me to count carbs correctly. She showed me her pump and encouraged me with her diagnosis story. When I ran into her five years later it was a pleasant experience. When I discovered your patient files on me a few months ago I read “ cannot help patient if patient will not help herself” – I was 18 years old (!!!), had ZERO diabetes education and a family who though it wasn’t diabetes, it was God teaching me a lesson….I needed a LOT of help.

Oh Phoenix Endo, how I loved you, you saved me. You and your staff helped turn my diabetes world around. I only got to see you because my roommate was terrified I’d die and she’d find me. She told her mom who knew you. You fit me right in when the normal wait was at least three MONTHS! You supported me, explained the numbers and ranges, listened to what I needed, accommodated me when I made stupid newbie mistakes….like running out of insulin in my pump at work. I honestly don’t know what would have happened without you. Before you I attempted to find an Endo on my own – he accused me of being pregnant and refused to do anything until I took a pregnancy test; I left and never returned.

Stanford Endo (#4) you turned my perception of California Endos around. You impressed me with your hands on help, respect and dedication. Some appointments lasted over three hours. I cried in your exam room. I had my first diabetic to diabetic, non-medical conversation. You were always willing to work out the numbers with me and make changes together. If I ever had a problem I could call any time of day, and not feel bad about it. You saved me my first night in Idaho.

Montana Endo, you were by far my favorite. You’re not all about the newest gadgets and medications other endos are trying out on their patients; yet you’re willing to try them out after some discussion on what’s best for ME. You respect natural remedies and are willing to build them into my medical maintenance plan. You found things and spent the time discussing each of the potential causes/diagnoses. I would love to move to the Missoula area, just to be your patient again. Despite my four and a half hour drive to get to you, you were always SO willing to help and work through any concerns and questions I might’ve had. You were also the very first to tell me I was managing my diabetes well and knew what I was doing and was free to make changes as I’d like; it was always okay to ask questions. I could take care of my diabetes management and he was always there to help. How could you not love a doctor like you?!?!

Even if we didn’t have a great doctor-patient experience, I am grateful for your help, because even if it was minuscule, you still helped.

A Grateful Diabetic

And I can’t forget my current Dr. Q…

Dear Current Endo,

You and I aren’t very close. You don’t know much about my Crohn’s medications and the effect Crohn’s has on my blood sugars and diabetes management. BUT, you are very willing to help me with any medication I may need. You are always on top of the newest technology and willing to let me try it out. I’m not sure I’d call you if I had a late night emergency…I think I’d call my PCP. Maybe in time I’ll trust you more. There’s nothing wrong with you or your staff, you’re all incredibly kind and helpful. You got me my Dexcom within weeks of my first appointment, you’ve set me up with a nutritionist tomorrow so that I can hopefully get a handle on diabetes AND Crohn’s friendly foods. I guess it seems you’re a little more chart/statistics oriented…you type all my info into your computer and seem to use it’s recommendations for to solutions to my struggles. When I brought up some concerns, you seemed a bit lost today. Again, I just don’t feel like we’re all that close…but there’s potential. You’re willing to help, when I call during the day I always get answers. When my insurance changed you were willing to work out a special contract and allow me to be seen. Starting a new endo is hard work, I’m incredibly grateful for your accommodations. I feel that we’ll work out well, and I feel l will continue to visit your office until I leave the area. …although I’m not sure I liked your mentioning the possibility of pregnancy…it’s that damn Phoenix tryout endo, he made me feel like a whore and I think I’m just sensitive to doctors considering that as a potential cause to my struggles.

I really hope I can see you for a long time and it will become more personal and my trust will grow.

Your Very Complicated Diabetic

DAY 1: Admiring our Differences

I can’t remember when the JDRF walk was in San Francisco, presumably the Fall/Winter since I remember it raining. Anyhow, it was the first time I met up with Jess and A. Jess had been “following” Meri on Twitter, so she was looking forward to meeting up with her too. I hadn’t known Meri, but it was great to meet her and her family.

I don’t read blogs as frequently as I’d like or as I should…or even as I used to. But when I get the chance to catch up, I usually make a trip over to Our Diabetic Life.

Coming from a family where my diabetes is not acknowledged, I think Meri’s family is amazing. I am in awe of every parent of a diabetic who gets involved with their kid’s diabetes. Having been diagnosed after high school, I didn’t know that many kids with diabetes, so I haven’t known many parents either. It’s amazing to see diabetes accepted into a family’s life, to see it integrated into their daily lives.

Having met Meri, her four sons and her husband, I love to read the blog. Seeing how a family can adapt to and accept diabetes is, there’s just no other word for it, amazing.