August 1st, 2009 by KerriSparling in Better Health Network, Health Policy, Opinion
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Two weeks ago, I was in Washington, DC with the Better Health team, listening to people talk about voting down government health care.
Last week, I was in Chicago at BlogHer, part of a lunch meeting with Valerie Jarrett, Senior Advisor to the President and Assistant to the President for Intergovernmental Relations and Public Liaison, listening to women at BlogHer talk about passing the government health care bill.
And I have now just entered the land of confusion.
Valerie Jarrett spoke with a room full of bloggers about health care, but she also listened. She listened while women told their personal stories and she seemed to understand that health care situations aren’t as simple to solve as we’d like them to be. Women candidly told their stories and a few tears even slipped out. But she listened intently. And she said she wanted to give a voice to those who might not speak up for themselves.
“Often the people who need it the most don’t speak up because they don’t feel like they have a voice. Give the grass roots a voice, empower them, work together informing people within their communities. You can work to help them get their voice, get info that they don’t have.”
This lady is important. Her cell phone rang several times during our lunch (it could have been THE PRESIDENT, for crying out loud) and she had her assistant take the call so she could focus on us. She handed out her card and scheduled phone calls between some bloggers and her staff to help with the specific health issues that these bloggers were dealing with. Sure, for them it was a matter of being in the right time at the right place, but she really listened. I’ve never sat in a room before with a member of high political influence who paid attention to the people more than the information on her cell phone or in her planner. (Maybe that means I’ve been in the room with the wrong politicians?)
It was a remarkable experience, and the room was electric with hope.
And now I’m even more confused about this health care issue. I want insurance coverage, I want good coverage, but I don’t want to be excluded due to my pre-existing condition. I can’t find a happy mental medium with this, but I know there has to be a way for people like me to find health coverage despite diabetes.
With that thought, I’m off to the Joslin Clinic in Boston, with my pregnant best friend in tow, to immerse myself in the best that health care has to offer. And I hope that whatever decision made by our government leaves me with access to the people I need to help manage my care.
*This blog post was originally published at Six Until Me.*
July 26th, 2009 by KerriSparling in Better Health Network, True Stories
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Earlier this week, I had a bit of a medical issue. Painful urination, high blood sugars, and the constant need to pee. (Ladies, I know you already know what’s up.) Urinary tract infection looming large. I was livid, because it was the day before I was scheduled to travel for this week’s business.
I haven’t got time for the pain, so I called my primary care physician, Dr. CT. “Hi Nurse of Dr. CT! It’s Kerri Sparling. Listen, I’m pretty sure I either have a kidney stone or a urinary tract infection, and I need to rule it out before I leave for a week-long business trip.”
Dr. CT was on jury duty. Damnit. So I had to call a local walk-in clinic, instead.
The clinic was a hole in the wall. Part of a strip mall structure. My confidence wasn’t high, but my blood sugars were and my whole body was screaming for attention, so I knew I had to follow through.
The receptionist was very nice. The nurse was even nicer. They took my blood pressure (110/74), my temperature (98.8) and a urine sample (ew). 
I should have known from the moment the sample cup was given to me that it wasn’t going to be a fun visit. The very kind nurse handed me this —>
That is not a urine sample cup. That’s like a party cup that you use for lemonade on a hot summer day. Not for pee. Oh God.
And then the doctor came in. For the sake of anonymity, we’ll call him Dr. Idiot.
“Hi. I’m Dr. Idiot.”
“Hi, I’m Kerri.”
“Kerri, I see you are here for pain when urinating. Are you urinating frequently? You see, you are spilling a significant amount of urine. I believe we may have found the source of your troubles.”
He closed his file, proud of himself.
“Dr. Idiot? On my chart there I wrote that I have type 1 diabetes. I know my blood sugar is elevated right now, which sucks but at least it’s not a surprise. But that’s not why I’m here. I actually suspect that …”
He cut me off.
“I think we need to address this first problem. You are aware of your diabetes, you say? How many times a month do you check your sugar? You know, with the glucose machine and the finger pricker?”
If I wore bifocals, it’s at this point that I would have slid them down my nose and given him a hard, Sam Eagle-type stare.
“I test about 12 – 15 times a day. But the real reason …”
“You mean a month,” he corrected me.
“No, I mean a day. I have type 1 diabetes. I wear a continuous glucose sensor. And also an insulin pump. I’m very aware of my condition, and I’m also very aware that it’s slipping out of control today because of this other issue, the pain issue. Can we talk about that?”
He looked at my chart again. “So you don’t use a meter?”
“Sir, I use a meter. And a machine that reads the glucose levels of my interstitial fluid. This is in addition to my insulin pump. I don’t mean to be rude but …”
Now he gave me a hard look. “Why the interstitial fluid? Why not the blood directly? I mean, you could have more precise readings with the blood.” He picked up my Dexcom from the chair next to me and pressed a few buttons to light up the screen. (Mind you, he did not have permission to touch it, but I’m again not saying anything.)
“You mean like a pick line? I don’t know. I’m sorry. Ask them?”
“Yes, but it would make much more sense and …”
I just about lost it.
“I’m sorry. I didn’t come here to talk about that. I want to talk about the issue I’m here for. Which is not diabetes. Or your ambitions to know more about CGMs. Please can we address what I’m here for?”
“The sugar in your urine.” With finality, he says this.
“NO. The fact that I think I have a UTI or a kidney stone. Please. Help. Me?”
I kid you not – we went ’round and ’round about this for another ten minutes. He didn’t believe me that I was at least sort of familiar with diabetes. His ignorance included, but wasn’t limited to, the following statements:
- “High sugar causes frequent urination. Maybe that’s why you are peeing often?” (Not because I was drinking a liter of water per hour to flush my system? Nooo, couldn’t be that.)
- “Did you have weight loss surgery?”
- “Grape juice also causes high blood sugar.”
- “That thing should really be pulling blood samples. Pointless otherwise.” (Meaning my Dexcom.)
- “The urinalysis won’t be back until Friday, and in the meantime you should start on a regimen of insulin immediately.”
- And also: “I didn’t peg you for a pink girl.” (Are. You. Serious??)
The end result, after an escalating argument that involved me yelling, “Stop. Talking about my diabetes and PLEASE focus why I’m here!” was a prescription for Macrobid that I could elect to take if my symptoms didn’t alleviate, and the instructions to call back on Friday for official lab results.
“Thank you. Really. Can I go now?”
He at least had the decency to look ashamed.
I’ve had some wonderful doctors over the last 30 years, and my health is better for it. But this guy? Complete disappointment.
*This blog post was originally published at Six Until Me.*
July 25th, 2009 by KerriSparling in Better Health Network, Patient Interviews
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“Friends for Life … this conference is delicious. It’s like the Woodstock of diabetes,” he said, pacing around the room and smiling warmly.
Meet Joe Solowiejczyk.
According to his bio on the CWD website, “He [Solowiejczyk] currently works for LifeScan, as Manager of Diabetes Counseling & Training and is a faculty member of the Johnson & Johnson Diabetes Institute. Joe is healthcare professional who has lived with Type 1 diabetes for over 47 years, Mr. Solowiejczyk has been able to translate his personal experience into patient care.”
To my untrained eye, Joe is the “guy who gets it.” He’s a diabetes nurse educator, and a person with diabetes himself. If he was a member of my personal medical team, he’d be the one I take most seriously because when I say, “It sucks,” he could respond, truthfully, with “I know.”
Joe hosted a session at Children With Diabetes called “It’s Not Just a Numbers Game.” This grabbed my attention because I write constantly about how an A1C is only one part of diabetes management. There’s all this emotional and mental stuff that comes into play.
“Ask me if I like it,” Joe said to the group of us. He paused for a second. “I hate it.”
I was sitting at a table with a bunch of CWD parents (including Bennet and Michelle) and I heard them all chuckle, but I just nodded in agreement. Empowerment is being able to say that diabetes is hard and that it sucks sometimes, but still forging ahead and working towards better health. I was glad to hear Joe telling this group of parents (and adults diabetics) that diabetes doesn’t have to be something we like. We can hate it, openly, and still remain positive.
“I schedule my diabetes depression days,” he said. “I plan them and then I tell everyone I know to call me every hour and tell me how courageous I am.” He laughed. “After about an hour, I’m sick of it and I just want to move on with my day.”
I like Joe. I like listening to him talk and I respect him for managing diabetes for over 47 years. I respect him for saying, “It took years for me to be able to say, ‘I’m having a hard time with diabetes,’ without it being a chip on my integrity.” This statement resonated for me because I think people want to read blogs about diabetes and find a lot of upbeat moments and happiness. But the truth of life is that there is an emotional gamut to be run and we have the right to run it, diabetes or no diabetes.
“You can not like it and still do it. Hating it [diabetes] and doing it are not mutually exclusive states.”
He talked about the daily duties of a person with diabetes, from waking up in the morning and testing to all of the bits and pieces of precision management that are required along the way. The possibility of a cure was mentioned. And while many diabetics say “I’ll eat the contents of an entire Crumb’s Bakery,” or “I’ll drink orange juice FOR FUN,” Joe smiled gently.
“If there’s a cure? What will I do? I’ll sit on a park bench for three weeks and stare at the sky and do nothing.”
It’ll be 23 years for me this September.
I’d love to sit on a park bench and count clouds for a while.
*This blog post was originally published at Six Until Me.*
July 15th, 2009 by KerriSparling in Better Health Network
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The idea of creating a game about diabetes both intrigues me and creeps me out a little bit. Diabetes is a game? I guess after an evening of “WHY 200? WHY?!!” I’m not feeling so light and fluffy about diabetes. But I see the potential for kids to learn about diabetes and its management through the use of games, so I’m all so for whatever gets good information out there. And over the last few days, I’ve come across two particularly interesting games, thanks to reader alerts, aimed at kids who either have diabetes or have friends with diabetes.
The first game is on the Nobel Prize educational games site and it’s cleverly called The Diabetic Dog game. (Wee bit short on imagination once they got to the naming part, I suppose.) I will admit – I played this game for at least 15 minutes and I appreciated the cuteness of the doggy.
As a “caretaker,” I was instructed to keep my diabetic doggy (named, in my profile, “DoggyPants”) happy (by petting him), well-fed (by purchasing food for him), getting him to exercise (by walking him), and keeping his blood sugar in check by giving him insulin injections. Keeping an eye on the bar at the bottom left of my screen let me know what DoggyPants’s blood sugar was, and I could feed and dose him accordingly.
(Sidenote: Having that bar gauge with his blood sugar in it sure helped me figure out what I was doing, and I wondered if the developers of this Diabetic Dog Game realized how they’re helping further the case for continuous glucose monitors.)
Overall, I liked how this game showed the importance of insulin, food choices, and exercise as the cornerstones for good diabetes management, and it didn’t tout insulin as “a cure.” Basically, all you do is chase this little puppy around and feed him or dose him or walk him. Constant cycle of redundancy, only the results aren’t predictable. Kind of like real life. 🙂
The other game I have been receiving reader alerts on is the Didget from Bayer. I haven’t seen this game in person, but according to the word on the street (read: their website), “The Didget blood glucose meter from Bayer is the only meter that plugs into a Nintendo DS or Nintendo DS Lite gaming system to reward children for consistent testing.”
So it’s an actual meter that snaps into the Nintendo system. (It appears to be, or be completely identical to, the former “GlucoBoy” from a bit ago.) Honestly, that is pretty darn cool, and I wish that kind of “fun” was available when I was testing my blood sugar as a kid. Hell, I’d like to have that kind of positive reinforcement NOW, thank you very much.
“This unique meter helps encourage consistent testing with reward points that children can use to buy items within the game and unlock new game levels. And, since the DIDGET meter is based on Bayer’s trusted CONTOUR™ system, you know you’re getting a meter that’s reliable.” They are also building a community for kids to “hang out in” virtually, comparing notes. Of course, since it’s Bayer, they need to slide in their personal product endorsement, but they have the right idea. Test often, get rewarded for keeping tabs on your numbers, and maybe Nick Jonas will show up at your house and give you a hug.
That last part? A lie. But Bayer is working its way into the hearts of kids with diabetes, and as a former kid with diabetes myself, I would have appreciated that kind of innovation as part of my childhood with this disease. From what I can tell so far, this meter is being marketed towards diabetics in the UK, but hopefully there will be a United States counterpart. With mg/dl readings. Because doing conversions when low? Not so easy.
So there you have it. We’ve come a long way from that game with the elephants or the other one about the Escape from Diab, and hopefully more efforts will be made to engage kids – and adults! – with diabetes. Positive reinforcement is hard to come by in this whole diabetes mess, so every little bit helps.
*This blog post was originally published at Six Until Me.*
July 8th, 2009 by KerriSparling in Better Health Network, Patient Interviews, True Stories
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After a hectic week with the conference in Philly and then Chris’s great news, I need to spend some time today catching up on everything. Thankfully, Jessica Phillips has offered to guest post today, writing about marking 500 days with type 1 diabetes. She’s come a long way, and I’m proud to host her words here on SUM.
Heeeeeeere’s Jessica!
* * *
As I was injecting myself with insulin on a lunch break at work, a co-worker walked by and exclaimed, “I could
never do that! EW! I hate needles!” Less than two years ago I might have agreed. I never had a strong phobia of needles, but that is not to say that I particularly liked them either. I was known in my childhood to run out of doctor’s offices into the parking lot at the first mention of “shot”. Now when I hear such a strong and callous remark to my now normal routine of insulin injections, I struggle with trying not to angrily reply, “Well you would have to give yourself shots if you had to in order to live!” or, “How do you think I feel? You think I want to do this?” I’ve learned as of late to simply smile and say, “It’s not easy.”
Reactions like this are commonplace for those of you who have experienced Type One Diabetes for many years, and even some for the majority of your life. For me, June 9th, 2009 marked my 500th day with type 1 diabetes. I was diagnosed in my hometown of San Diego, California on January 25th, 2008 at 26 years-old. For a couple months prior to diagnosis I had been experiencing the typical signs of hyperglycemia and a failing pancreas as I was constantly dehydrated, urinating, and tired. Being a college student and in a constant state of stress, I quickly attributed the majority of my symptoms, from dizziness to infections, to be solely related to my immune system’s battle with my constant stress. After many weeks of procrastinating, I finally urged my doctor to order a blood test. I went in to the lab on January 23rd and was called by my doctor 24 hours later while I was driving to school. The tone in her voice immediately caught my attention and set me in a state of alarm. She informed me that my blood sugar the day before was above 300 mg/dL and I was to avoid sugar and be referred to an endocrinologist immediately.
Luckily I was able to see an experienced endocrinologist the next day, and he diagnosed me with type 1 within minutes of being seated in the exam room. I was in complete shock, and felt confused, angry, and overwhelmingly sad all at the same time. I felt a struggle between trying to remain alert to the bombardment of information he was feeding me, and trying desperately not to cry. The doctor left the room to retrieve my new meter and insulin pens, and I lost it. Luckily I had some moral support with me, but I have never felt so alone and lost. I kept thinking, “how did this happen?” and, “what did I do wrong?” To have gone many years without having anything major occur medically, not even a broken bone, it was a major shock to hear I had something irreversibly wrong with me. I not only had something wrong, but I could not do anything to change it.
The next few days were extremely challenging to say the least. I was unable to give myself insulin and had to have someone else do it for me for the first couple days. I would sit and look at the needle and could not conceive of how this tiny piece of metal was going to go through my skin. I just kept thinking it was so wrong, and foreign. I also cried. A lot. And I researched online and in books so much that I felt as though I could speak at a lecture on the biology of diabetes. I found the knowledge empowering, and the more I grasped what my body was actually doing, and not doing, I became more confident in my ability to control my state.
Now, 500 days later, this diabetic routine is normal to me. I can hardly even remember a time when diabetes wasn’t on my mind. The memories have faded of when my blood sugar was not a concern, and when I was able to look at food as just food. The last year and a half has been a giant emotional roller coaster, full of ups and downs, but they have changed me. Sometimes I get the look of sympathy from others when I detail my hardships with this disease, anywhere from medical costs to just the simple annoyance of pricking myself all the time, and I have found myself realizing that although I would not choose to have this disease, I consider myself lucky. I am lucky of course to not have something worse, but having gone through this change has made me look at my life through a new and clearer lens. My bottom-line now is a cliché idea, but it is so true … life is short, and you only get one shot, so make it worth it, no matter what.
* * *
Thanks for sharing your story, Jessica. (And for the record, Jessica is the one with the fantastic hair on the right in that photo. Also for the record, I just realized that today is my 8,209th day with diabetes. Holy crap, my pancreas is lazy.)
*This blog post was originally published at Six Until Me.*
