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American doctor talking to senior man in surgery — Stock Photo

General

I am for, “Patient Participation in Medical Product Discussions” – 440

This is a guest post by Bennet Dunlap who blogs at http://www.ydmv.net/. The content below was originally published on his blog. I apologize for the formatting, which is my doing.

FDA has a very short term docket (30 days closes on Dec 4) about Patient Participation in Medical Product Discussions. Right smack in the middle of Diabetes month Thanksgiving. Not ideal comment time.
American doctor talking to senior man in surgery — Stock Photo
So DOC, we need your help.
Stephen Shaul started the ball rolling to get some comments in. The goal of comments is to be complimentary of the 2014 actions FDA has taken with the diabetes community and ask to keep that going, and maybe step that up with a PDUFA meeting. http://www.ydmv.net/search?q=pdufa.
If you can cut paste a comment great, if you can riff on the talking points making you comments similar but unique, even better. Everything you need is here: http://www.stripsafely.com/comment-on-patient-participation-with-fda/.
Personally I would like to see most o the comments in the docket be on diabetes issues. Let’s dominate the docket.
Time is short.
Thanks for stepping up.
Bennet

General

Open Stigma – 460

Originally posted on Cranky Pancreas:

I can bet my lunch money most people in the DOC know  about what transpired this week, when CrossFit decided to tweet a gem of an image depicting a bottle of Coca-Cola with the words “Open Diabetes” next to it. First responders got so offended by the fact that they didn’t differentiate between types of diabetes, they played their type 1 card. After all, we type 2s are the ones that should blame ourselves, we are guilty as charged for our type 2 diabetes; type 1s, on the other hand, get a free pass. People cried so hard, CrossFit apologized… or tried to… and made things even worse by adding to the stigma we have to face every day. I’m not on twitter anymore, but I could see that CrossFit has now decided to play the diabetes paladin, and is sharing all kinds of misinformation about type 2 diabetes, but that’s a story for another day.

But the problem is not CrossFit. The problem is us.

I could say I’m outraged, but I’m not. I could say I’m sad, but I’m not. I could say I’m full of negative feelings, but I’m not. I’m just tired… I give up, or at least I feel like giving up. I’ve been part of the Diabetes Online Community for 8 years. I’ve participated in conferences, meetings, committees, etc. I have tried to come up with an idea to make T2s more visible in the community. I have taken time off from the madness to regroup. A while ago I decided to move from the advocate role to the patient role because I couldn’t, in all honesty, advocate for anyone if I was doing so poorly with my diabetes treatment. But I’m still an advocate in many ways; for myself, for my close friends who have to live with type 2 diabetes.

But the Diabetes Online Community is just what it is. A battle of types; the constant debate of who’s more worthy of attention, the have’s and the have not’s, the auto-immune vs. the lazy, fat ones. And I just had it today. I’m not entirely convinced that some people affected by T1 diabetes really grasp the fact that the struggle is very similar for T2s regardless of how it happened. That’s why I decided to choose my battles wisely. I will participate in anything that will help me, but I will refrain from participation if I don’t feel included. I will concentrate on my own care and be my own advocate. I can’t advocate for people who stigmatize me or any of my fellow T2s, and I don’t think I should get in any kind of argument to justify my needs as a patient.

We need care and access no matter what. What difference does it make what type it is, if at the end of the day the risks and complications are the same? But for type 2s, in addition to everything we have to deal with, there’s also the shaming and the stigmatizing. It’s like you get beat up every time you ask for help. In the end, I am the one responsible for my diabetes. I can’t expect people who lack compassion to do anything about it or understand how I deal with it.

But I’m not giving up, or removing myself from the equation. I’ll stick with my fellow T2s, even if it’s just to share what we feel and give each other support. I’m also sticking with them because I’m not a perfect patient, and I’m fat… and sometimes lazy, but my diabetes is caused by so many other things. And that should be my priority, take care of myself; not trying to convince others that I deserve compassion, too.

Eating & Cooking

Counting Carbs: What It’s Really Like In My Mind Sometimes – 171

“Carb counting” is a meal planning technique for managing your blood glucose levels.

As a T2 diagnosed at 31 years old, counting carbs means that I have to create filters around food where there were never any. It means that the amount of mac & cheese, cheese grits, bread pudding, beef patties and coco bread, fried plantains, ice cream, cookies, and yams that I’ve become accustom to eating (not all at once of course) for years must be reduced… significantly. When I learned about carb-counting in my diabetes education class, it seemed like it would be a challenge to eyeball the right amount of blueberries for my smoothies or learn how to cook enough rice for a single serving, but no one prepared me for the internal dialogue that I would have with myself frequently when I encounter my favorite dishes.

“That’s too much, put some back.”

“Go ahead and get the last piece, it’s okay.”

“Are you really going to ask for a doggy bag for that small portion?”

“You’re rather low, HAVE ALL THE (insert great-tasting-high-in-carb edible item here) YOU WANT.”

“Now look what you’ve done, you have over-corrected the hypo.”

“I hope my medication will counter this meal.”

“Oh God, I’m going to lose a toe behind this past week’s behavior.”

“One bad week won’t kill me, any sooner.”

The physical highs and lows that I experience (related to glucose levels) are compounded in invisible ways by the mental and emotional highs and lows I experience. There are times when I feel triumphant about maintaining a rigid diet 45g-60g of carbs per meal. There are other times I feel ashamed for having normal slice of cake and spiking my glucose levels. There are times when I celebrate an excellent A1C. There are times when I am angry that I can’t do the things I use to do before diabetes arrived. There are times when I am consumed by thinking like a pancreas.

I make mistakes. I indulge perfectly. I over indulge. I underestimate my carb-count and get hypos. I have moments when I simply can’t get enough of a junk-food item. I have moments when I don’t want to eat, but must. This complexity is part of my experience.

Diagnosis Stories

Dr. P.’s Diagnosis Story – 223

I felt on top of the world in January 2011. I had just graduated from Penn State with a PhD, completed my first semester as a university Professor (my dream profession that required 11.5 years of college), and I was working out five days a week (on the path to getting below 200lbs, a long-term goal that I put aside to complete the dissertation). I shed 10lbs in January and was eager to see what February’s results would be.

Unfortunately, things got very strange in February. I was losing weight RAPIDLY! In 10 days I had lost 22lbs and was frantic because I knew it couldn’t be from working out because I was suddenly too tired to make it to the gym.

I was also extremely thirsty and urinating a lot. I didn’t think my level of thirst was normal, so I went to a physician (it was our first meeting since I was new to the area). She reassured me that my thirst was due to excess exercise caused by working out five days a week, my electrolytes were off and since I only drank water I needed to “Drink Gatorade,” she said.

But after a week of drinking Gatorade and other sugary drinks, I knew that something more serious was wrong with me. By the following week, I sat in the rear of the church on Sunday because I couldn’t get through service without going to the restroom; my vision was blurred; I lost my appetite; my lectures were interrupted because I couldn’t recall information accurately; and the fatigue was overwhelming.

On Valentine’s Day, I was so exhausted that my co-workers, having seen the ill look on my face, insisted that I go home and rest rather than have office hours. On my way home, I fell asleep at a couple of traffic lights. The car horns that honked behind me broke the slumber and I drove to the next light. When I arrived home, I walked into bathroom, ran a hot bath, and sat down in the tub hoping that the warm waters would rejuvenate me.

I passed out.

I awakened hours later in a daze. I was scared. But I didn’t call anyone and I lived alone. I decided that in the morning, I would pack a bag, go back to the physician, and not return home until someone told me EXACTLY what was wrong with me. Thankfully, I woke up the next morning. I explained to the physician that her suggestion to drink Gatorade had only caused me to get sicker. She pricked my finger and stepped out. Her assisted whispered, “Your glucose didn’t register and that’s not a good thing.”

“WHAT? What in the heck does that mean?” I called my mom (a nurse). When the physician entered the room with a needle in her hand, my mother was on the receiver demanding that I “go to the emergency room, NOW!”

“You’re not a case for the emergency room because you’re not in a lot of pain. If you go, you’ll have to exaggerate your pain scale,” the physician replied when I said that I was going to obey my mama and go to the emergency room. “Let me give you this shot before you go and tell them your pain is 10 out of 10.”

“I am going to go. My mama said ‘go.’”

Unable to stand on my own, I called a co-worker to take me to the hospital. By the time I got there, I required a wheelchair and I had forgotten all about “exaggerating my symptoms.” Plus, there was no need to; within 20 minutes I heard the following words “Your glucose is 593. You’re on your way into a coma. Get her in the back stat. She needs an IV. How long have you been a diabetic?”

“What? Never. I’m not a diabetic.”

“With a glucose reading of 593, you’re a diabetic now! And, if we don’t get that number down quickly, you will go into a coma.”

“I’m not a diabetic, I don’t even know any diabetics. I’m just very tired. A coma, Really?”

“Really!”

I was admitted. I spent the next six days in the hospital crying, being confused, scared, and feeling more alone than ever. At 31 years old, I became the first diabetic in my family (and I’ve taken both of my family trees and shaken them upside down. Since people claim that genetics is such a huge factor, I thought that I would surely find someone. But 4 grandparents, 11 uncles, 3 aunts, 2 parents, and 1 sibling later, I’m still the lone diabetic). I had also been getting routine blood work tested every six months for the previous 5 years as a graduate student (as I had elevated cholesterol). Since people also say that the majority of diabetics were pre-diabetic before their diagnosis, I ordered my medical records from Penn State to check.  I had two A1C and fasting glucose results each year for past 5 years, including the last one just six months prior, but all my tests were normal. No sign of elevated glucose anywhere.

As if that wasn’t enough, two months later on April 16th, an EF3 tornado destroyed my apartment complex.

 

Today, I am med-free and manage diabetes with diet and exercise. My journey of passing out, being on the brink of a coma, having a tornado karate-chop my home, and ditching all medication within eight months is the reason why my motto is Diagnosed NOT Defeated.

 

Diagnosis Stories

Sue’s Diagnosis Story – 201

This is an edited version of a post from my blog written in 2009.

I had gestational diabetes with all five of my children, born in 1993, 1996, 1999, 2001, and 2004. As a result, I’ve been researching diabetes as it relates to me for over 20 years. During my second pregnancy, I found out the test for gestational diabetes was actually a screening test to see who would become Type 2 later on in life. It wasn’t until after that they realized that women with elevated glucose levels during pregnancy had certain complications. Large babies with underdeveloped organs is the one that stands out the most in my mind. Knowing that my odds of becoming diabetic because of having gestational diabetes *five* times were high, plus having a family history (my mom is diabetic as was her father), I knew that it was almost certain that I would become diabetic. I accepted that, but tried to hold off the inevitable as long as possible.

Although I was never really into exercise, I was never overly overweight. Yes, I could stand to lose a few pounds, but I didn’t look like the diabetes poster adult. In late March 2008, I went to the doctor with knee pain. He wanted to run some blood work, including an arthritis panel. Since my appointment was early and I hadn’t eaten breakfast yet, I asked him to all do a fasting blood test and

A1c. Three days later, my doctor’s nurse called me to tell me that I had Type 2 diabetes. My fasting glucose was 129 and my A1c was 6.9, not dangerously high but high enough for the diagnosis. Typically a diagnosis is made after two fasting tests of 125 or higher, but given my personal and family history my doctor and I didn’t feel the need for a second test.

Luckily (or not), because of my previous experience with diabetes, I felt like didn’t go through a lot of the normal emotions that most diabetics go through when they first get diagnosed. I knew it was coming. I was just hoping to wait a few decades. There are days that I just would like to say, “Ok, I’m tired of this diabetes thing. Where do I go to send it back?” Unfortunately, as we stand now, there’s no cure. Once you have diabetes, there’s no giving it back. It’s yours to keep forever and ever.


That is totally not fair! Last year I got a new pair of shorts that were too big. I could take those back! We opened a package of hamburger one night that smelled bad. I got to take that back! Why can’t I take this diabetes back?

So what can I do? I can help raise money and become an advocate so that maybe they’ll find a cure in my lifetime and I can give back my diabetes. Maybe I’ll have the peace of mind knowing my children won’t have to test their blood sugar, watch carbs, or avoid eating a whole bag of M&Ms in one sitting when the mood strikes them. I don’t know if it will happen, but all I can do is try!

General

It’s good to be humbled! – 299

Saturday I participated in the American Diabetes Association’s Step Out: Walk to Stop Diabetes. This is a picture of me with my Red Strider hat and shirt. The sign I am kneeling next to read, “Red Striders rock! You are why we walk!”

While we walked, it hit me. It really hit me…

I am a Red Strider.

These people are walking for ME!

I looked behind me and saw all of the people not wearing Red Strider attire. Those people we not just walking behind me. They were behind me in more ways. Ways that humbled me.

These people raised thousands of dollars to help find a cure for ME.

These people took time out of their Saturday morning for ME.

After I took this picture, I started crying. My youngest two were walking with me. I told them that seeing all of those people walking was a humbling experience.

What does humbling mean, Mom?

It means…. it means…. *pause due to tears I’m trying to hide*

Mom, what does it mean?

“It’s when you realize that other people are more awesome than you are,” is all I could get out.

These people that were behind me are awesome. They didn’t have to be there. They didn’t have to raise money. They did this because they are amazing.

Why do I walk? I walk not just for me, my children’s future, and those with diabetes. I also walk as a thank you to those who reminded me to be humble that day. Those who helped remind me that there are people in this world who are awesomely amazing. People who go above and beyond – just because they want to.

Thank you to those people!

Ciara Wearing Topshop Dress Attendance Ciara Performs Ditch Fridays Ditch — Photo

General

Blue Fridays 2013 – 338

This post was originally published on my blog, RFamHere’s Ramblings.

Every Friday during 2013, as well as World Diabetes Day, I wore at least some blue in recognition of Blue Fridays and posted a picture. Below is a slideshow video I made from those pictures.

Ciara Wearing Topshop Dress Attendance Ciara Performs Ditch Fridays Ditch — PhotoThe song, “Hold Me, Jesus” by Rich Mullins, means a lot to me. When I’m feeling discouraged, this song helps to encourage me. I found it fitting to use that song in the video.

This is my first attempt at making a slideshow video. Considering, I think it turned out alright. Enjoy!

Management & Care

Putting On My Oxygen Mask – 360

Why is it that as a parent I make sure my kids do things like go to the dentist religiously twice a year, but I don’t always do the best job at taking care of myself? I come up with excuses why I can’t exercise, forget to test my glucose levels, put off going to the dentist… The list goes on and on.

Ok, I’m not quite being the “model diabetic” here, am I? I want to set a good example for my children, but sometimes life gets in the way. It’s sometimes hard for me to take time and money away from the family to do something for myself. At one point my hair was half way down my back because I had a hard time justifying the cost of getting a haircut. Taking care of myself sometimes feels like an easy to ignore “luxury”.

Quite often in our busy lives, we grab a burger on the go instead of taking the time for a healthy meal. We sit at the computer instead of going for a walk. Finding little ways to stay healthy doesn’t have to take a lot of time, money, or effort.

I need to remind myself I’m not being selfish by taking care of me. Remember the talk before take-off on an airplane? Parents, please put on your oxygen mask before putting one on your child. I need to remember that I can’t take care of my family if I don’t take care of myself first.

Multi channel pipette pipetting. — Stock Photo

General

Type 2s at Friends for Life? MasterLab! – 393

This probably sounds silly, but for the last few years I’ve been jealous of Type 1s and their families. Why? Friends for Life (#FFL). This conference is sponsored by Children With Diabetes (CWD) and is designed for people with Type 1 diabetes and their families. I felt like a kid not invited to a birthday party.

This year there is an event at FFL with Type 2s on the invite list: Diabetes Hands Foundation’s MasterLab. Want to spend a day talking about advocacy? MasterLab is for you! Recently I was made aware of this day of advocacy discussion and asked to attend as a person with Type 2 diabetes (see disclaimer below). After looking at the schedule, how could I say no?

Kate and I (Sue) are two of the writers from The Type 2 Experience who will be there. I would love to see more Type 2s at this event so I wanted to help put the word out. Here’s a special deal for those attending FFL already:

Diabetes Hands Foundation offers this MasterLab in collaboration with Children with Diabetes (CWD). Registered participants in CWD’s Friends for Life conference are welcome to join the MasterLab as part of their experience at no additional cost. Separate registration for the MasterLab is required.

(Note: There’s more information on the MasterLab page if you want to take advantage of this offer.)

The excitement and anticipation grows as I try to figure out what to pack, find out which of my diabetes online community (DOC) friends will be there, and figure out what bag will fit under the seat in a 16″x14″x12″ space to carry my clothes and laptop.

Are you going to FFL or MasterLab? Let us know! Maybe we can meet up!

Disclaimer: I have been offered a scholarship by the Diabetes Hands Foundation as part of my participation in the Diabetes Advocates program to attend the MasterLab. My travel and hotel are being covered by the scholarship, but the opinions and ideas (as well as excitement and anticipation) I will report on are my own.

General

From Strangers to Friends – #MasterLab – 415

On Tuesday (July 1), I flew to Florida to attend MasterLab which was on Wednesday. This day of advocacy by Diabetes Hands Foundation occurred at the Friends for Life convention in Orlando, FL. Let me start by saying that I was beyond excited to be offered a scholarship to attend (see disclaimer below). I would not have been able to attend without it. After the initial excitement, I started the planning stage. I have to admit that I started to freak out a bit. The last time I flew was June 2001. Yes, before 9/11 and all the strict TSA security rules. I started reading up on these rules. The night before I left I dealt with a bad thunderstorm and insomnia. My stomach was a mess that morning.

 

All went well with my first ever taxi ride and as I went through security. I admit that I closed my eyes and prayed as we took off. Overall the flight wasn’t bad though we had a little turbulence here and there. I started to concentrate on MasterLab and my DOC friends who would be there. We landed in Orlando and I made my way to the shuttle that would take me to the hotel.

As I approached the van, there was someone waving in the window with a big smile. The van door opened, and I heard, “SUE!” How exciting it was to see Kim (the one waving), Rachel, and Kerri. What was even more exciting, more than recognizing them right away, was that they recognized me. ME? Kerri and Kim are big names in the DOC. But me? I almost started crying!

The rest of the evening was spent connecting with online friends as if we were long-time face-to-face friends and getting to know so many other wonderful people. It didn’t matter if we were Type 1, Type 2, or Type 3. We were all friends with a common mission – to advocate and educate until a cure can be found.


(Sue & Kate from The Type 2 Experience at MasterLab)

During MasterLab, I got to meet so many wonderful people. I was excited to have at my table people like Kate, Aliza, and Karen. As I sat next to the wonderful Cherise, I asked if I could get a picture with her. She enthusiastically said yes. Both of us used our phones to get selfies to post online. The picture she posted on Twitter of us included the caption, “from strangers to friends.”

From strangers to friends. I miss you, my friends. Until we meet again…

———
Disclaimer: I was offered a scholarship by the Diabetes Hands Foundation as part of my participation in the Diabetes Advocates program to attend the MasterLab. My conference fee, travel, and hotel were covered by the scholarship, but the opinions and ideas I will report on are my own.