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Posts from the ‘Diabetes Advocacy’ Category

Revisiting: Undefined.

“You have diabetes  You seem fine.” “I am fine.”
Diabetes makes me walk the precarious fine line
Between “I’m sick” and “I’m not” and the whole in-between
That makes diabetes invisible, and yet so seen.

“Needles?  Every day?  I could never,”
You could.  And you would, and you’d do it forever
If that’s what kept you from good life or harm,
You’d never think twice of needles in your arm.

“You seem fine.”  “I am fine, at least I think?”
I try not to let it push me to the brink
But even my best days are still diabetic
And on some days I feel frustrated, mad, or pathetic.

I can follow the rules and try to appease
The needs and requirements of relentless disease,
But even my best days are burnt at the edge
By the efforts that work their way in like a wedge.

“You seem fine.”  I am fine, except days when I’m not.
But I do what I’m told, and I learn what I’m taught.
And I’ll keep working harder to keep from the claws
Of an illness that doesn’t do “rewind” or “pause.”

Will it stop me?  It might, I can’t lie – and that’s scary
But between now and then, I throw all these hail marys.
It’s life, and it’s mine, and I won’t let it bear
The weight of a heart and mind wraught with fear.

There are miles to run, and children to hold.
There are travels to have, and stories to be told.
Diabetes?  Intense, and it looms, and it’s giant
But I’m more than my pancreas.  I’ve become self-reliant.

I may host beta cells that checked out long ago
But I refuse to accept the assumed status quo.
I’ll work harder, think smarter.  I’m not resigned
To accept limitation.  I live life undefined.

#WalkWithD: Lorrian’s Type 2 Experience.

(This might look familiar to you …)  A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

Last week, John shared his story, and this week, Lorrian is sharing hers.  Lorrian Ippoliti has been living with type 2 diabetes for almost 11 years, she is a native Californian, and she has been married to her husband, Mike, for nine years.  Today, I’m grateful that she’s sharing her #walkwithd.

*   *   *

The year before my diagnosis, my primary care physician called me and told me that my annual blood work showed that my “sugar (was) high” and that I “should watch it.”  Watch my sugar? What did that mean?  I didn’t ask, and my doctor didn’t offer.  [She certainly didn’t say anything about pre-diabetes]

The following year, my doctor’s office asked me to return so my doctor could review my blood work in person.  My doctor told me I had type 2 diabetes, gave me a sheet of paper about low carb diets, a prescription for Glucovance, and told me to “call me after you pick a meter.”  [My A1c was 13.4, but she didn’t explain what that meant]

That. Was. It.

No referral to an endocrinologist, no suggestions for reading materials or classes, no direction on how to choose/where to find a meter, and I was too stunned and frightened to ask any questions.

My husband and I researched diabetes (thank goodness for the Internet) and made drastic changes to our diet because of our fear, which led to multiple hypoglycemic episodes (chugging fruit juice in Costco, anyone?).  A coworker of mine explained to me about meters and showed me how to test, and a coworker of my husband’s referred me to an endocrinologist.

The endo took me off Glucovance, which eliminated most of my hypo episodes.

Even with my husband’s support, the first 8 years were awful, full of misery and fear and guilt.  The drastic diet changes we’d made were hard to sustain and I was constantly battling food and trying to make sense of how my body reacted to it.  I somehow got my A1c below 7, only to have it climb back up to the 11-ish range as I alternately rebelled or gave into feelings of helplessness.

Eventually, that endo told me there was nothing else medically she could do for me.  Yeah, a doctor gave up on me.

I completely gave up on myself after that.  I continued to take my medications, but for about a year I didn’t see any doctors at all.  I didn’t think anyone could help me or would listen to me.  (Even my dermatologist argued with me about the name of one of my diabetes medications, insisting that there was no such thing as Glimepiride and writing down Glyburide in my chart instead, so I gave up on him!)

Eventually, my husband told me how worried he was about me and that he wanted me to live for a long time.  Mike had found a nutritional therapist and we began seeing her as a couple.  Then he asked me to see his primary care physician, who turned out to be the first doctor to listen to my frustrations and fear.  He was so caring and agreed to manage my medications, but told me he wanted me to find an endo and gave me a six month deadline.

I found a new endocrinologist who is kind and compassionate, and both a cheerleader and a taskmaster.  She listens to me, celebrates my small victories, and pushes me to accomplish more than I believed I could.   Was there anything she medically she could do for me?  Sure!  She tweaked my medications, taking me off Glimepiride, increasing my Actos, and adding Lantus (insulin) and Victoza (an injectable which slows the emptying of my stomach).  (These medications were all available when I was seeing the previous endo.)

I’ve gained weight using Lantus, but my A1c has decreased from 11-ish to 7-ish.  I’m also back to having hypo episodes (one or two a month).  It’s a frustrating trade-off.

About two years ago my endo prescribed a Dexcom CGM, which has helped change my outlook about having diabetes.

For example, my endo wants me to have a glucose level of 100 mg/dl when I wake, which has been impossible for me to achieve and made me feel like a failure.  Using the CGM revealed that I have dawn phenomenon.  Seeing my glucose level in action relieved a lot of frustration – and – my endo can see that I hang out around 100 mg/dl for much of the night, but my level usually rises 30-40 points starting around 4:30am.  Plus, as an accountant I’m a data geek and having access to my numbers round the clock has helped me see patterns related to food and activity.

It has been an arduous journey since my diagnosis.  I’ve gone through the various stages of grief – indeed multiple times it seems – and I believe I’ve finally arrived at acceptance.  I can live with diabetes.

Kerri’s blog has been a touchstone for me throughout my journey – her openness about the challenges she faces have helped me know that I’m not alone, and I especially appreciate learning about the technology available to us.  In fact, my endo was impressed that I already knew what a CGM was, and now I’ve added CGM in the Cloud/The Nightscout Project to my diabetes management. (I HIGHLY recommend it!)

I share John’s outlook on what the designation type 1 vs. type 2 means.   Despite how we each developed diabetes, I feel that those of us with the disease share many more similarities than differences.   I want to thank Kerri from the bottom of my heart for inviting me to share my story and I’m looking forward to the future.

Thank you so much for sharing your story, Lorrian!!!

#DayOfDiabetes Went a Little Rogue on Me.

I started the day strong, but after hours of a frustrating high blood sugar and seemingly bolusing saline instead of insulin (but it was insulin – I checked), I hit a big NOPE when it came to documenting the end of my #dayofdiabetes. I didn’t want to keep documenting my frustrations, not because I was ashamed of them, but because I was FRUSTRATED, you know?

Even though there isn’t a hashtag for my day today, I’m still here. I’m still doing this diabetes thing. And despite some frustrations, I remain fine.

Chronicle. (See also: #dayofdiabetes)

(Chronicle was a movie from a few years ago that I actually liked very much, even though it god a little crazypants towards the end.  Still, a quality film, IMO.)

But today’s post is not about that movie.  It’s about chronicling a day with a chronic condition.  For Diabetes Awareness Month, I’m taking diabetes awareness to task by documenting the daily duties of life with type 1, from site changes to emotional responses to blood sugar numbers … and all the non-diabetes-yet-still-diabetes crap in between.  A big advocacy “thank you!” to Chris Snider’s #dayofdiabetes campaign, and I think November is a perfect time to pop the bubble of diabetes awareness.  People living with diabetes know what diabetes is like.  Let’s show people who might not understand what a day in the life truly means.

Join in on Twitter using the hashtag #dayofdiabetes and share what strikes you about life with diabetes.  Then share that hashtag with your non-diabetes friends, family, coworkers, and Internet connections because Diabetes Awareness Month should be about educating outside of the DOC (Diabetes Online Community).

#WalkWithD: John’s Story.

A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

I want to know what it’s like to walk with type 2 diabetes, and today, John, a self-proclaimed 67 year old “youngster” and currently living in the southeast Alaska panhandle, is answering a few questions about what life is like for him.

Kerri:  Thanks for taking the time to chat with me today, John.  When were you diagnosed with type 2 diabetes?

John:  I think it was October 18, 2007.

Kerri:  Did you know anything about diabetes before your diagnosis?

John:  Yes a little, I had a cousin, uncle and a niece that had type 1 and even though I was a few years older than my niece we used to play together as children and were quite close.  I was also a babysitter to her when she was young.

Kerri:  How did your diagnosis impact you, physically?  How about emotionally?

John:  I was told to lose some pounds, I was 260 when diagnosed and they wanted me down to 190.  It took me almost a year to get 196 and I found that I couldn’t maintain it and feel comfortable at all, so I let my weight drift back up to about 210 and have remained at that weight ever since.

Emotionally?  I was relieved, I was having some heart problems and it seemed to me that it was getting worse and the doctors couldn’t figure out why.   Then one of the E.R. doctors noticed that every time I showed up in ER that my blood sugar was somewhat elevated.  That led to an A1c, which was off the chart.

Kerri:  Now that you are a few years into your diabetes journey, what have you learned along the way?

John:  Quite a lot about the disease, I at first researched Type 2 only and then I read an article about how diabetes progresses in the body if left unchecked and I thought at first that it was an article about Type 1, but then as I reread the article again I realized that it did not make any difference how the diagnoses was made it was the same disease.  The only difference was in how we each contracted it.  Right now, it is known that in the PWD’s T1, the immune system attacks the insulin producing cells of the pancreas  and destroys them, and, PWD’s T2’s there are several ways that the same cells are either destroyed or made to under-perform.  The end result is a disease called diabetes.  So I then stopped looking at it as the type of diabetes someone had and started to notice how they were treating their diabetes, so that I may be able to treat mine better.

Kerri:  What makes you want to tell people about your diabetes journey?  Why do you think it’s important for people with all kinds of diabetes to share their stories?

John:  My story is going to be similar to someone out there and just maybe that person needs to know that they are not alone.  The more people that stop being afraid of this disease and start letting people know that they have this disease the more that diabetes will be recognized as a viable threat to their own health.

Kerri:  What do you want people to know about life with type 2 diabetes?

John:  What I want everyone to realize is that I don’t have “type 2 diabetes” but that I do have “diabetes” and the way it came about is type 2(reason unknown).  I treat my diabetes just the same as many thousands of other diabetics and it does not make one bit of difference what type it is.  Being a certain type is good for person to person conversations in a give and take on how we treat our own version of diabetes and it’s good that our doctors know, but beyond that it’s useless.  Living with diabetes is not easy, it takes a lot of time that I would like to be doing other things.  It often times scares the heck out of me and it is not a set in stone science, it at times does things that seems to defy all reason and it will bite you if you don’t pay attention.  It never stops and that is the worst one, it is there all the time, no letup.  But with knowledge and the right tools it can be managed and quite well, just not controlled, at least not by me.

To every negative there should be a positive, my positive is that I am in better general health than almost all of my friends that don’t have diabetes, you see, I now take the time to take care of myself, eat right, exercise.  Before I was diagnosed with diabetes I never seemed to have the time to do those things.

Thank you so much for sharing, John, and I’m looking forward to sharing more perspectives from my type 2 peers in the coming weeks. 

If you are living with diabetes of any kind, please raise your voice.  Your story matters!  #walkwithd

#DOCasksFDA – Your Feedback is Needed, DOC!

THIS IS THE LINK TO THE SURVEYRead below for more information on the virtual discussion between the diabetes community and the FDA, and how your input will shape that discussion, and potentially our future.

“On November 3 from 1pm-4pm EDT, the Food and Drug Administration (FDA) and the diabetes community will host an unprecedented event to discuss unmet needs in diabetes. As a community, our job is to present the numerous challenges we as patients face each day, and we need your opinions to be a part of this discussion! Please fill out this short survey to share your thoughts on what’s important to you when it comes to living with diabetes. Your feedback will go directly to FDA and help influence the conversation on November 3.

Please answer the questions that follow as honestly as you can. Your answers could affect the way the FDA perceives unmet needs in diabetes, and ultimately, how it reviews the risks and benefits of new drugs and devices.”

THIS IS THE LINK TO THE SURVEY AGAIN.  IT IS IN ALL CAPS BECAUSE IT IS IMPORTANT AND YOU ARE IMPORTANT AND YOUR OPINIONS ARE IMPORTANT.  As a community, we need to raise our voices.  Please show the FDA that we are many, we are empowered, and we are loud.

Link coming soon so that you can register for the discussion, but in the meantime, please fill out the survey and share it with your DOC friends.  And thanks!!

Guest Post: No Child Should Die of Diabetes.

Veerle Vanhuyse is off and running … literally.  Verlee lives with type 1 diabetes and is running the NYC Marathon in a few weeks, aiming to raise awareness and funds for the IDF’s Life for a Child program.  Today, I’m proud to be hosting a post from Veerle about her marathon goals!

*   *   *

A quarter of a century it’s been already but it still feels like yesterday. About to turn 16 and counting the days to leave for France with a bunch of teenagers to learn the language. I hadn’t been feeling well over the last few weeks and my trip to France became a trip to the hospital. Diabetes! I took my very first shot of insulin on my birthday. Sweet sixteen indeed!

In the beginning, I did really bad, didn’t take care of it at all. Only in my late twenties(!), I took diabetes more seriously and got my a1C’s from 9+ to 5%.

Eighteen years and a child later, I started running. And in eight years time I went from 100 meter and being exhausted (I’m not kidding), to 5K, 10K, half a marathon and finally the full monster; Berlin Marathon 2012.

That sad girl back in 1987 would’ve never guessed she would be doing what I’m about to do in one month:  Being at the start of the mother of all marathons, New York City 2014!

Needless to say, I am very excited about this upcoming event. But make no mistake, there’s no such thing as knowing exactly how to anticipate with the sugars before a long run, or any run for that matter. Every workout is different, depending on so many factors all diabetics deal with every single day.

Three weeks before the Berlin marathon, I suddenly realized I should grab the opportunity to raise money for diabetes. And I did. 1.700 euro went to research at the University Hospital in Leuven, Belgium. But this time I wanted to do something more specific. It didn’t take me long to find a new great goal. Surfing the web for a few hours I found a wonderful initiative called ‘Life for a Child’ supported by the International Diabetes Federation. I read about Dr. Marguerite De Clerck, a Belgian nun who spent the past 55 years treating children with diabetes in the Democratic Republic of Congo.

It instantly hit me! THIS was a project I immediately believed in and I wanted to make a difference for.  In the end my goal is comparable to the wonderful Spare a Rose, Save a Child campaign: Provide children and youth in developing countries the basic care they need to stay alive with diabetes.

So far, I raised 2.500 euro, and I’m working really hard to at least double this amount.  I’m hoping to help families in Kinshasa keeping their loved ones alive.

It is a clear message: No child should die of diabetes.

*   *   *

I asked Veerle to provide a bio, and the one she sent to me in first person language was too laced with passion to edit in any way.

Here’s Veerle, according to Verlee:  “There’s the Belgian, so called ‘outgoing’ 43 year old, who talks a lot and who’s always in for a joke. And there is the T1 diabetic since 27 years, who can be really sad about the battle she has to fight against the disease every single day. “She deals with it really well,” people – even close to me – would say. They have no idea. One way to “deal with it” is running ! A lot! And in less than 4 weeks, I’ll be living my dream: NYC marathon ! Last race, because there’s also arthritis in my foot now. With this last 42,195km, I’ll be raising money for Life for a Child, to provide children in Kinshasa with the necessary supplies, proper care, and some decent education they need so badly. I am extremely passionate about it, and I want to scream as hard as I can: Please people, read my website and find it in your heart to donate, donate, donate!!!”

To donate to Veerle’s efforts, please visit this link on her websiteThanks for raising awareness, Veerle!

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