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Worst patient ever

October 4, 2010

Last week, I came home to a large white envelope sitting on our doorstep. I looked at the mailing label, which had my full legal name. Whoa, I thought, this must be important. The return address confirmed it: Rady Children’s Hospital in San Diego.

My medical records from diagnosis through high school were in this envelope.

Requesting my records had always been at the back of my mind, but I was never sure that they were still there (since a lot of hospitals destroy old patient records after 7 years or so). Finally, Chris urged me to get them, saying it couldn’t hurt to try– but he also said, “But don’t get your hopes up, just in case they’re gone.” I called Children’s Hospital and talked to a cheerful lady in the Records department. Imagine my excitement when she said, “We don’t destroy records.” HOLY SMOKES!

So now, here they are, after having traveled across the country. It’s a thick packet, about 100 pages, of my [very bumpy] journey with type 1 diabetes. There were things in there I already knew (such as my bg at diagnosis: 327), but the things that interested me the most were the clinic notes.

Those were really hard to read. I saw myself go from a totally compliant 9-year-old girl to a monstrous teenager who didn’t give a shit about good control. Hey, other teens did drugs, drank at parties, had unprotected sex…me, I fudged my blood sugars. I keep telling myself it could have been worse. :P

I found all my lab values and made a timeline:

07/08/1993 – 14.8 (a little over a month after diagnosis; I have no record of getting an A1c taken at diagnosis, so this is the closest one)
02/24/1994 – 11.8
05/19/1994 – 7.5
08/11/1994 – 8.9
09/15/1995 – 7.6
12/14/1995 – 8.5
05/24/1996 – 8.3
08/30/1996 – 7.8
11/22/1996 – 7.9
02/28/1997 – 8.3
09/19/1997 – 6.5
01/30/1998 – 6.4
08/07/1998 – 7.7
04/23/1999 – 9.9
08/27/1999 – 8.2
03/17/2000 – 9.8
06/09/2000 – 9.4
10/27/2000 – 11.8
06/01/2001 – 9.9

Seriously, WTF was I thinking? 11.8?! I fluctuated so much during my teen years…maybe it was a reflection of my raging hormones?

And on the WTF front, I thought I was being so slick testing a billion times the nights before my endo’s appointments, changing the date and time on my meter with each test (Mom and Dad, if you’re reading this…remember, I was 16!!!). I wasn’t fooling anybody: “She certainly has a marked discrepancy between her home glucose testing and her A1c values. What is quite remarkable in looking at her home glucose values is that there is very little deviation of her glucose readings around the average value at any particular time of day. This is quite unusual to see such a small spread between the highest and lowest numbers even on someone who is taking multiple daily injections. I would be a little suspect as to the validity of all these measurements.” AY!

My other favorite comment was: “We do not have any log books today, as Faye reports that she ran out of log books since it has been such a long time since her last visit.” Right, because I couldn’t buy a notebook myself, or even better, use a piece of paper?

Perhaps one comment that kind of struck me as weird (now, at least) was from the dietitian. I remember not being too fond of her; I guess the feeling was mutual: “She has had difficulty with compliance issues and is not maintaining as tight a control as we know she is capable of.” It’s funny because now, I think I’m pretty compliant, and working harder to get my A1c as low and stable as possible.

It was interesting looking back at the first 8 years of being diabetic. Even though Chris was the one who encouraged me to get my records, I’m a little hesitant to let him read them…I’m ashamed at what the last few years held. He said, “It’s okay. You were a teenager. The important thing is that you realized the importance of good control, and you’re doing a good job now.” :) I was glad he said that, because honestly, I was starting to feel like I was the worst patient ever at Children’s Hospital!

To end this post, here’s a picture of me at my First Communion, about a month before I was diagnosed (also the skinniest I’ve ever been in my life):

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Diabetes bling

September 18, 2010

The other week, I was crawling all over Google to find a piece of jewelry that I could tailor into medical alert jewelry. I’d been wanting one of those Tiffany bracelets with the chunky links and the heart tag, but what bugged me the most about a bracelet was that it gets in the way of…well, my entire day. I have a desk job, so something clanging and clinking against my keyboard all day long would just about drive me nuts.

If I’m going to wear something all day long, every single day, it better look good. I found a ton of sites that had customizable jewelry, but nothing really stood out to me. I wanted something bold but discreet at the same time.

Finally, I hit the jackpot with My Flying Star, a San Francisco-based company (hey, Chris’ hometown!) that makes custom medical alert jewelry, and absolutely fell in love with the Red Big Dipper. It was pretty much exactly what I was looking for, a big red circle about the size of a quarter, with a steel Star of Life. Any normal person would just think it’s a red circle with a silver star, but this could save my life in an emergency.

The back of the pendant boldly displays that I have type 1 diabetes and wear an insulin pump. This is definitely a far cry from the thin, hard-to-read script on my old bracelet.

Aside from the beautiful jewelry, the thing I really appreciated about My Flying Star was its owner, Elizabeth. My necklace shipped out faster than I thought it would, but for some reason, USPS failed with matching the address on the package to my work address. They marked the package as “unable to deliver” and left a notice…only that notice was apparently left at someone else’s door, because my workplace never received one. Elizabeth followed up with me; she had been checking the outstanding tracking numbers and noticed this with my order. Customer service is a huge part of any company, and reaching out to someone (before they call you about a problem) wins major points.

P.S. If you guys are wondering about that blue bracelet in my pile of daily jewelry, it’s the JDRF Who’s Your Link? bracelet. Thanks Sarah for letting everyone know about it!

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Retinopathy and a good A1C

September 14, 2010

About six months ago, my optometrist found a cotton-wool spot in my eye and advised me to see a retina specialist. I slightly freaked out, but Dr. P assured me that it was harmless and it was a very common side-effect with those who have had diabetes for as long as I have. (I use the term “side-effect” rather than “complication” because it’s not quite a complication yet, but I’m hoping it won’t get to that.)

I asked my boss if he knew anyone, and he referred me to Dr. B. Dr. B specializes in the retina, and more specifically, he specializes in diabetic retinopathy. My first appointment with him absolutely freaked me out– he said he wasn’t worried about the retinopathy (“It’s normal for someone who’s had diabetes for 17 years”) but saw something else he was more concerned about. He told me to go upstairs to see Dr. T, a neuro-ophthalmologist, right away.

At this point, I was starting to have a panic attack. WTF was going on with my eyes?? You never get referred to another specialist that quickly unless something is wrong.

Turns out the nerves in my eyes are swollen. Dr. T said she couldn’t be sure if it was just how I was born or if it was truly a problem, so she scheduled me for an MRI (those things are freaky as hell, btw). The results ended up being that everything was fine, that’s how my nerves really look. Fat nerves, I guess.

Fast forward to yesterday, to my six-month follow up with Dr. B. He didn’t seem to agree with Dr. T’s assessment of the MRI scans. Then he said, “There is a little bit of hemorrhaging, but it’s hard to tell if it’s because of the diabetes, or because of your nerves.” He called it a pseudo tumor…and of course all I heard was TUMOR.

“Wait, what?! I have a tumor?!”

He assured me that it wasn’t a real tumor; that’s why they called it a pseudo tumor. And I thought, “Holy crap, can you call it something else?!”

Dr. B said that, at my next appointment with Dr. T, I needed to have a talk with her to see what was going on, what’s in the future, and what I should be doing.

So here’s my dilemma. One doctor says I’m okay; another says I’m not. One doctor is telling me that it’s hard to tell what’s going on with my eyes because of another problem. The other one is saying I’m fine. Who do I believe?

I saw my endo today and gave her an update on yesterday’s events and a quick recap of what happened six months ago. She agreed that the two conflicting opinions was a little strange, but everything seems okay otherwise. I don’t have floaters, or random flashes of light, or blurriness (aside from the blurriness due to my craptacular vision).

She also mentioned a study that I found kind of ironic: if a person goes from a high A1C and suddenly goes to a good one, it actually makes retinopathy worse. Makes no sense, but it is what it is. I told her that prior to going on the OmniPod, my A1C was in the mid 8’s. Six months after I switched, my A1C was 6.9, then it dropped to 6.5, hung out at 6.2 for a few months, and my most recent one is 6.1.

We’ll keep monitoring it. I’m hoping this really isn’t a serious issue, as both ophthalmologists are looking out for different things, but it’s really bugging me that two experts have conflicting assessments. Maybe I need to get a third opinion?

That being said, my endo visit today was a LOT better. My labs are good, my A1C is great (I’m still pushing for under 6, but hey, I’ll take 6.1), and everything is going well on the Ping. I do have a lot to work on in terms of getting in shape and losing weight before it’s time to think about a baby (and piling more weight on my body), so Lord help me with that. For some reason I think it’s easier to work on a stable A1C than it is to lose weight! O_o

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Getting used to Bumposaurus

September 9, 2010

I was brushing my teeth earlier, formulating my next blog post in my head, thinking about how awesome the Ping is and how being tubed hasn’t bothered me one bit.

Then I went to pee (sorry, TMI) and nearly yanked out my new site. Yikes!

Okay, so maybe there are a few things I still need to get used to. Usually my pump is tucked away in between my girls, and I never pull it out during the day to bolus (thank you, handy dandy meter remote). At night though, when I’m wearing my pajamas, the pump is clipped to my shorts. And sometimes I don’t remember it’s there.

Aside from the random yanking of tubing, I’m thankfully short enough that doorknobs don’t notice the tubing. (Side note: I had a site change today and I ripped off the old site, just to see how it would feel. Ouch.)

So far, so good. My bg’s have been completely awesome lately, ranging from 69 to 156. I’m trying out the angled and straight sets to see which one I like best, and also which ones work on different parts of my body. I learned the hard way that a site change requires multiple packages…I’ve been spoiled with the all-in-one packaging of the OmniPod and never had to worry about making sure I had infusion sets, tubing, and oh yeah, CARTRIDGES. I’m learning how to use the ezManager software and how amusing it is to hear La Cucaracha for my alerts.

We’ll see where this journey goes, but so far I’m loving the ride. :)

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D Art Day!

September 1, 2010

Today is Diabetes Art Day! While I have to make this a quick post, since I’ll be leaving on a jet plane for my home state of California in the next few hours and I still need to finish up packing, I wanted to thank Lee Ann for spearheading this.

Art is not one of my strong points, and inspiration tends to hit me at random times. I’ve been in a dry rut ever since I found out about D Art Day, so I decided to cheat and use something I took back in March. Photography counts as art, right?!

I call this one “Keeping the Balance.” It’s dedicated to those days you’re chasing highs and lows, trying to find that happy medium between crashing lows and annoying highs. I had just been treating a low (funny how a childhood favorite is now something I turn to when I barely have any energy to move), and while I was waiting for the juice to kick in, I decided to clean out my meter case. Dumped all the test strips into the trash can. A few minutes later, I looked down and had to laugh at the irony. Bonus points for the flavor; reminds me of California ;)

So there it is, my lame contribution to D Art Day. Not that it only lasts a day, because I tend to look for the beauty in something as ugly as this disease every single day.

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The incredible invisible illness

August 26, 2010

In honor of National Invisible Chronic Illness Awareness Week, Karen did a meme on her blog, so I thought I’d chime in as well!

30 Things About My Invisible Illness You May Not Know

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

2. I was diagnosed with it in the year: 1993. May 29, to be exact.

3. But I had symptoms since: a month or two prior. My mom caught it because I mentioned to her that I was having symptoms like Stacey in the Baby-Sitters Club. She scolded me and told me not to say stuff like that, but it prompted her to watch me closely. At diagnosis, my bg was 327, which was way lower than what some others are diagnosed at.

4. The biggest adjustment I’ve had to make is: having a manual pancreas.

5. Most people assume: that I ate too much sugar as a kid. Not true, actually.

6. The hardest part about mornings are: waking up to a high bg, or being tired from stalking wandering bg’s all night.

7. My favorite medical TV show is: House, MD. Hugh Laurie…man!

8. A gadget I couldn’t live without is: medically, my CGM (and by default, my OmniPod). Otherwise, it would most likely be my iPhone.

9. The hardest part about nights are: making sure I’m in range and pod sufficiently filled with insulin before going to bed.

10. Each day I take __ pills & vitamins. (No comments, please) 1 allergy pill, 1 birth control pill, 1 ACE inhibitor (not because of high bp, but for renal protection).

11. Regarding alternative treatments I: laugh and sorta roll my eyes. I’m all for praying for a cure, but in the end, God has given me the tools to take care of myself while I wait.

12. If I had to choose between an invisible illness or visible I would choose: invisible, for sure, although sometimes I think I’m more visible than I’d like to be with various robot parts peeking out of clothes.

13. Regarding working and career: I try to not let it get in the way of work. Sometimes I need to take a few minutes to test and treat, but for the most part I keep calm and carry on.

14. People would be surprised to know: that I hardly get burned out with this disease (I have though, and it was depressing not having anyone to talk to). I know each day is a new day, and each bg is just another picture in the album of life.

15. The hardest thing to accept about my new reality has been: that it really isn’t a new reality. It’s been part of me for so long that testing my bg and bolusing before each snack or meal is completely normal.

16. Something I never thought I could do with my illness that I did was: be okay. Be healthy. You hear all these horror stories about diabetes, and if it wasn’t for my stubborn nature, I’d definitely be one of those people who are too scared to test for fear of seeing a high number.

17. The commercials about my illness: piss me off. Not all diabetics have horrible control and will have amputated limbs.

18. Something I really miss doing since I was diagnosed is: uhh…I can’t even remember what life was like before orange-capped syringes and painful fingersticks. On second thought, I kinda miss when my dad used to bring me lunch at school every day (carefully balanced, of course).

19. It was really hard to have to give up: being able to eat whatever I wanted, whenever I wanted.

20. A new hobby I have taken up since my diagnosis is: reading d-blogs!

21. If I could have one day of feeling normal again I would: be verrrrry weirded out. At this point, my definition of “normal” is pretty different from someone who does not have diabetes.

22. My illness has taught me: that I am stronger than I thought I could ever be. I haven’t let this get me down, and I don’t plan on letting it.

23. Want to know a secret? One thing people say that gets under my skin is: any ignorant comment really, but as of right now it’s “What the heck is THAT on your arm?!”

24. But I love it when people: ask me questions about diabetes, because it shows me that they really are interested in learning and not just assuming.

25. My favorite motto, scripture, quote that gets me through tough times is: “If God puts you through it, He’ll get you through it” and “Keep calm and carry on.”

26. When someone is diagnosed I’d like to tell them: don’t sweat it. You’ll be fine (and then introduce them to the DOC).

27. Something that has surprised me about living with an illness is: there are SO MANY of us out there.

28. The nicest thing someone did for me when I wasn’t feeling well was: run across the street to get juice for me (and please ignore the fact I didn’t have anything on me, haha).

29. I’m involved with Invisible Illness Week because: even though we have an invisible illness, we as people are very visible. We’re not just a statistic.

30. The fact that you read this list makes me feel: happy! :)

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Your friendly neighborhood barista

August 24, 2010

I stop by Starbucks every morning on my way to work. It’s literally a block away from the office, so it’s been my go-to place for the past few months (I’ve even mayor of it on Foursquare, much to my friend Steph’s amusement– she’s trying to oust me, the nerve!). Every morning, I’m greeted by theeeee friendliest baristas ever. They greet me with, “Hey Faye…your usual?”

Since summer began, Starbucks has been giving out their very tempting treat receipts: buy a drink before 2pm, and you can buy a grande cold drink after 2pm for $2 (plus tax). Of course, this also marks that time of day where I’m squirming at my desk, trying to fight off the food coma from lunch. Perfect afternoon break!

One day, I noticed that familiar feeling of “I’m going to be low soon so I should get something.” Steph and I headed over, and I ordered a passion tea lemonade.

R, one of my favorites, made my drink, and as he was about to slide it across the counter to me, he stopped and said, “Can I ask you something?”

“Sure, what’s up?”

“What’s that on your arm?”

I looked at the back of my left arm and saw my pod peeking out from under my sleeve.

“Oh, it’s my insulin pump.” I turned to give him a better look.

“Oh, you’re diabetic? Wait…I made your drink sweetened. Is that okay for you? Do you want me to make another one with no syrup?”

I was truly touched at his genuine concern (and thankful he wasn’t one of those darn food police Storm Troopers) and assured him it was okay. I explained my bg was dropping and that I needed something to kick it back up. He, in turn, explained that he has a family history of diabetes and that he was getting regular check ups to make sure everything was okay. I commended him for staying on top of things, since most people don’t.

I left Starbucks feeling hopeful that not everyone out there will see my pod and say, “What the heck is THAT on your arm?!” (To which I want to respond, “What the heck is THAT coming out of your head? Oh, it’s your face.”) Or those who see my pod and say, “Wow, is that a nicotine patch?” (Um, not sure what kind of patches you’re using but that is a helluva lot of nicotine.) I love telling people about type 1 diabetes, but if you’re going to come at me with really dumb comments, it’s really hard for me to not be sarcastic.

Cheers to those who are curious and inquire in a respectful manner!

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