I am Blessed

Laddie_Head SquareToday was a reminder that I live a very blessed life.

This morning my new Dexcom G4 system arrived by FedEx. I currently have good insurance and all it took was one phone call on Monday to have this fabulous medical device show up on my front porch today.  Proving that I don’t live in a rut and am easily amused, I am somewhat excited that my new receiver is blue and replaces my out-of-warranty hot pink receiver.  Life is too short not to grab every opportunity to be happy.

Dexcom Blue Excitement

This afternoon the UPS guy delivered a big box containing 3 months of infusion sets, reservoirs, and test strips.  These supplies were ordered through the Edgepark website on Sunday.  Many people totally bad-mouth Edgepark, but once I learned to ignore the wacky prices they quote for “Retail”, I have had excellent service from them.  (I hope that I have not jinxed myself.)  I was told by a rep in the CGM/Pump department at Edgepark that my good insurance is one reason that things have gone so smoothly for me.  I also give credit to my endocrinologist whose multi-doctor practice is very organized and responds quickly to requests for prescriptions and medical necessity forms.  Nothing was too exciting in this order except that it includes one box of Contact Detach metal sets that I have never tried.  Some Type 1’s at TuDiabetes swear that they are the best, so I figured they were worth a try.  Earlier this summer I tried out Cleos and Insets and neither worked well enough to lure me away from manually inserted Comfort Shorts.

For those of us who participated in the Spare a Rose campaign, my ease in getting needed diabetes supplies is in stark contrast to the difficulties that many children/adults in developing nations have getting insulin to keep them alive.  I won’t need to buy insulin until September.  When I do, all it will take is a few clicks on the computer and a drive to my local Walgreens to replenish my deli drawer with insulin (my refrigerator does not have a butter compartment!).

I wish that I didn’t have diabetes.  But I am blessed because I have supplies on the shelf, a pump in my left pocket, a CGM in my right pocket, and plenty of insulin in the refrigerator.  Not everyone is so lucky.

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Thanks to diabetesherosquad.com for permission to use their Dexcom graphic.

Why Do I Blog?

Laddie_Head SquareLast week I had my annual eye exam and started to write about it.  Fortunately the appointment went well and as I started to write, I started to wonder why anyone else would have any interest in the appointment.  Sure, you all like me and want to know I’m doing well.  But a whole blogpost worth of doing well?  Maybe not that. There is a certain self-absorption that is present in most blogs and mine is no exception.  At the same time I am uncomfortable with too much personal trivia and you won’t see me posting blood glucose numbers on Facebook or Twitter.  (The one exception is “Twinsies” when my Dexcom G4 and Freestyle meter have matching numbers.)

This got me thinking about now that I have blogged for over a year, why do I blog?  Have I achieved any of the aims that I professed in my first post?  What have I gained from it?  Have I added anything to the Diabetes Online Community (DOC)?  Am I enjoying myself and what do I think about the future of Test Guess and Go?

Why do I blog?  The main reason I blog is that I enjoy writing and creating graphics, some silly and others more serious.  It’s something to do.  I’m at a stage in life where I no longer work and am not satisfied with having something like golf be the center of my life.  I am certainly not an artist or a great writer, but I like having a creative outlet in my life.  Sometimes I think that it is pitiful that I spend so much time writing about diabetes, but there is no doubt that it is something I know a lot about and spend a lot of time dealing with.

Is it to become rich?  That’s a joke, although there are a handful of diabetes bloggers who have used their blogs as stepping stones into careers as diabetes advocates and social media consultants.  Although their lives are purposeful and rewarding, I don’t think that anyone has yet financed a mansion on Diabetes Easy Street through books and consulting fees.  I’m not being paid to blog and except for an occasional book or CGM case, I have received no concrete rewards.  I have not been approached with bribes of cash or chocolate-covered donuts to sway my opinions on any issue.

Little Fish Big PondIs it to become famous?  I admit that one of my aims in starting a blog was to increase my presence in the Diabetes Online Community (DOC). I hoped to become a little fish in what is a big pond for those of us with diabetes and a little pond when it comes to the whole wide world.  The measure of my new-found fame is that now when I Google myself, I find images and links.  Previously I did not.  To put this search engine fame into perspective, my dog shows up in “Abby the Black Lab” Google searches and prominently sports her flowered hat and DSMA crown in the image section.

Is it for diabetes advocacy?  Advocacy is a hot topic in the DOC and it easily becomes a burdensome topic.  One of my favorite discussions of this burden is a January 2014 blogpost by Scott from Rolling in the D.  If I summarize his thoughts correctly, he was writing (and maybe whining) about the expectation that just because he was a diabetes blogger that he was required to become an Advocate with a capital-A.  At the same time he understands that through his sharing his diabetes story, he has probably turned into an advocate.  That’s true for me also.  I refuse to feel guilty that my main goal in blogging is not and never has been to be an advocate.  I am a good follower/supporter and feel proud of my participation in DOC projects such as Spare a Rose.  I have also initiated some projects such as my Type 1/Type Conversations with Kate Cornell of Sweet Success: My Life with Type 2 Diabetes.  But I don’t want to be weighed down by expectations of what I should be doing just because I write a blog.  Nor do I want to feel bad if I feel that I’m not living up to what others in the DOC are doing.

Do I pay attention to stats?  You betcha.  Do they make sense?  Sometimes, but not always.  Some posts that I work really hard on get fewer views than others which are flippantly churned out when I just want something to publish.  Stats provide encouragement because they show that I have gained new readers in the last year.  It’s hard work to write a blog and readership is a compliment.  One of my biggest achievements is that I have finally written some posts with more views than those of Abby the Black Lab.

Where do I fit into the DOC?  I am one of hundreds of bloggers in the DOC.  I am old enough to be the mother of most Type 1 bloggers and I am happy that you have accepted me as a friend.  I believe that my co-bloggers and I are good writers and I am proud of what has been published on Test Guess and Go.  Some of our posts have been highly praised and commented on.  At the same time I am careful not to become jealous of  more-established bloggers who get tons of views and repeatedly get invited to represent us at conferences.  One reason is that they have earned their place and secondly, I don’t want the responsibility that goes along with being “big-time”.  I will continue to be a happy little fish and work hard to support all of the other fish, big and small, in the DOC.

Am I fulfilling any of my goals?  Yes, I think that Test Guess and Go has become known as a blog where people of about my age have a place to talk about how diabetes has affected our lives.  Sue from New York has described both her experiences as a Type 1 approaching Medicare age and her life as a parent of a Type 1.  Sue from Pennsylvania has written extensively about her Type 1 husband and advocated for Medicare to begin providing coverage for CGMS.  I’ve shared stories of diabetes then and now and have not been shy about expressing my opinions on any issue.

What has been the main benefit of being a blogger?  With no doubt, the answer is friendship and relationships.  My blog contributors, Sue from NY and Sue from PA have become good friends who understand and walk-the-walk of Type 1 diabetes.  Building on my Twitter and Facebook relationships, I’ve continued to meet and get to know many people living with all types of diabetes in the USA and around the world.  No one wants diabetes in their life, but the people I’ve met in the DOC are incredible!

What is the future of Test Guess and Go?  It is here today and will be here tomorrow.  Beyond that the future is an unknown.  I would like to hear from more seniors who are approaching Medicare age or are already there.  If you are interested in writing a guest-post or becoming a regular contributor, please contact me.  I hope that our readership will continue to grow.  I hope that I can continue to find things to write about.  I hope that my Windows desktop computer continues to work so that I still have access to my beloved Adobe CS5 design programs.  As always, I hope that diabetes will be cured and that the theme of this blog can be changed to Golf, Hiking, and Dog-walking for Old Ladies.

Conversations: Two Spouses of Type 1 Diabetics

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Sue B_Head SquareSue from New York and I first came into contact with each other through the American Diabetes Association message board. My husband had gone on Medicare and discovered that his Continuous Glucose Monitor (CGM) would not be covered by Medicare, and I needed to get in contact with someone who might answer some questions as to what I needed to do to fight the guideline that Medicare had that prevented the coverage of the CGM. Sue from New York posted an answer to my CGM inquiry even though she wasn’t on Medicare as yet. I think that we may have chatted very briefly on the forum before I asked her for her email address so that we could communicate privately. After emailing for a month back and forth, I asked her for her phone number. I thought it would be easier to speak on the phone. She sent me her phone number and we started talking on the phone a few times a week and really became good friends. At some point, she suggested that I contact Laddie about doing some blogs on Laddie’s Test Guess and Go site.

Sue and her husband decided to take a road trip last week. They started off in Maryland, then went to West Virginia, and on the final leg of their journey came to Harrisburg, Pennsylvania, where I live and spent a few days with my husband Marc and me. We had a great time meeting in person and being able to speak to each other face-to-face. Sue and I thought it would be interesting for me to have a conversation with her husband Steve as spouses of diabetics. She, in turn, had a conversation with my husband Marc. The following is a result of my conversation with Steve.

Sue from PA: What was your reaction when Sue was diagnosed as a diabetic?

SteveS_Head SquareSteve: I thought that since we had gotten through it with our son Steve, who was diagnosed as Type 1 at age 4, that hers wouldn’t be as bad because she was diagnosed as a Type 2. I was worried, but I knew I could handle it.

Steve: How was it when Marc was diagnosed for you, because you hadn’t been through it?

Sue from PA: Initially when Marc came home from the doctor and told me he had diabetes, I was pretty shocked. Then I started to educate myself about diabetes and I realized that I had a misconception of what it involved food-wise. I always thought that you couldn’t have sugar. I soon learned that sugar was the least of my worries. It was actually carbohydrates that were the real villains since they turn into sugar.

Sue from PA: What do you do to help Sue with her diabetes management?

Steve: I keep track of her monitoring, make sure that she is taking her medications, help her with her placement of her pods (OmniPod is the pump that she uses to deliver her insulin), help her when she is hypoglycemic and make sure she gets something to eat or drink to bring her blood sugar back to normal. At times I have taken her place in watching the grandchildren and have taken them places where she would have taken them normally, and at times I have driven her to the store when she has needed to get something and didn’t feel as though she could drive.

Steve: How long has Marc had his diabetes, and how have you taken care of him?

Sue from PA: Marc has had his diabetes for approximately 19 years. I am very fortunate in that he can do his everyday care by himself. He is totally responsible for his insulin pump and when he had a CGM he was totally responsible for changing his sensors. Basically, I manage his food by counting his carbs for each meal that I prepare. I am responsible for saving his life when he gets hypoglycemic, and I am constantly reminding him that he owes me big time since I’ve had to save him more times that I can count of my two hands. I have learned to give him the glucagon when he blacks out and I have leaned to recognize the symptoms when he starts to go low.

Steve: Sue has also told me that she doesn’t know what she would have done without me and how grateful she is that I have been able to help her through this.

SuePA_SteveNYSue from PA: Emotionally, what’s it been like to live as the spouse of a Type 1 diabetic?

Steve: At times it has been very stressful. At times I am truly emotional over it. Sometimes I have been scared but I made a commitment in my wedding vows, in sickness and in health to love her always and I would never leave her because of her health.

Steve: On that same topic, how has it been for you?

Sue from PA: (Heavy sigh). It’s been a challenge. I don’t think there is ever a day when I don’t worry about him. One of the biggest issues for us is the lack of his having a CGM due to being on Medicare and them not covering it. When my children became independent and were able to be out on their own at night, as most mothers do, I never truly fell into a deep sleep until they were home and the house was locked up. Now I never fall into a deep sleep even though my husband is right beside me. I am always aware that in the snap of a finger he can go into a hypoglycemic low, at which point I might have to jump out of bed, and I literally mean jump, to make sure to get juice or a soft drink into him to prevent him from going unconscious. During those times when it’s happening so fast that he does become unconscious, I need to give him the glucagon. Even though I’ve done it numerous times, my hands still shake and my heart beats almost out of my chest. I’m just always worried when I am not with him. I can understand how you feel, Steve, because I feel the same way. I will always honor my wedding vows. But you have to make light of it sometimes to be able to live with the situation. I can truly say that seeing someone you love having a hypoglycemic low is something you never forget. They are drenched in sweat, their eyes are unfocused and they have no idea of what is happening. It’s frightening.

Sue from PA: Steve, do you have anything else you want to add to this conversation?

Steve: In less than a year Sue will turn 65 and will go on Medicare. I hope and pray that when her insurance no longer covers her, Medicare will be there to cover her with her diabetic supplies and necessary devices that she needs, i.e. her CGM.

Sue from PA: Diabetes had been a true education for me. Because of Medicare’s lack of coverage of the CGM, I have become an advocate. I have done things I would have never thought I could do. I blog, I did a podcast, I wrote an article for my local newspaper, and recently I have become involved in S-2689, the Medicare CGM Access Act that was introduced into the Senate on July 30, 2014 by Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH). It addresses the growing concern that people with Type 1 diabetes who are over the age of 65 cannot obtain coverage for the critical and potentially life-saving Continuous Glucose Monitor (CGM) through Medicare, even if they used these technologies successfully prior to becoming Medicare eligible. A few weeks ago I sat in on a telephone conference with representatives from Dexcom, Medtronic, J & J and Animas and also a representative from the endocrinologists association, among others. I was one of just a few to be invited to sit in on this telephone conference.

Sue from PA: I thank Steve for having this conversation with me. Most of the people I come into contact with are the diabetics. I’ve not had much contact with the spouses and it’s good to be able to speak about what it’s like for us, the caretakers. I hope that we can have more conversations in the future.

In closing, I would like to ask everyone reading this who has not yet signed the JDRF Petition or clicked on the link that asks their Senators to support S-2689 to please do so. It’s so important to the many diabetics on Medicare who cannot get a CGM because it isn’t covered by Medicare. So many are on fixed incomes and can’t afford the cost of the CGM and the sensors.

Click here to email your U.S. Senators to urge them to co-sponsor legislation that would ensure Medicare covers CGM
Click here to sign a petition to urge Medicare to act now to cover CGM

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If you are interested in participating in the Conversations project, click here for information.

Conversations: Two Type 1 Diabetics Have a Chat

Conversations Banner_T1T1My husband Steve and I just returned from a car trip to Maryland and West Virginia to visit relatives. On the way home I had decided I wanted to meet Sue from Pennsylvania, my fellow frequent guest blogger on Laddie’s Test Guess and Go blog. Sue and I had initially met on the ADA Type 1 board a year and a half ago, and since then we have talked on the phone twice weekly and become good friends. I live in a town called Farmington in the Finger Lakes region of western New York, and Sue lives in Harrisburg, the capital of Pennsylvania. While we were there Sue and her husband Marc took Steve and me to Hershey, where we took the Great American Chocolate Tour. A wonderful outing for diabetics, don’t you think? LOL

Sue and I came up with the idea of interviewing each other’s spouses while we were there, so we could each get the perspective of a fellow diabetic and supportive spouse. The following is a discussion between me and Marc, two Type 1 diabetics. As you will note, we have similar stories.

Sue: Marc, how did it come about that you were diagnosed as a diabetic?

MarcB_Head SquareMarc: I was diagnosed at age 49. I started losing weight very slowly but continuously. One day I realized my pants size dropped from a 38” waist to a 34” waist. Then a 32” fit well. As this was happening, friends were taking notice that I had lost a lot of weight. These same friends were asking me if I felt okay. My answer was that I felt fine. What really got my attention was a trip from Harrisburg to Atlanta. One day in the middle of our stay in Atlanta, I noticed that I was going to the bathroom approximately 4 or 5 times each hour. On the trip home (872 miles), I had to pull over at every single rest stop to go to the bathroom. I thought that I might have a urinary tract infection. I went to my doctor, where he pulled some blood and informed me that I had Type 2 diabetes.

Marc: Sue, how were you diagnosed?

Sue: In 1988 I lost several pounds over the summer with no effort. I also made frequent bathroom trips and was very thirsty, but I attributed it to the hot summer weather, and besides I was thrilled with my new dress size. In the fall I went for a pre-op blood test at the hospital. My doctor’s office called me the next day and told me that my blood sugar was 480. I replied that I knew what that meant, because my 17 year old son had been diagnosed as Type 1 at the age of 4. When I went to the doctor’s office, I was told that I was a Type 2 diabetic. I accepted this diagnosis because my mother was a Type 2 diabetic. My doctor gradually put me on various Type 2 diabetes pills and increased the dosages in an effort to improve my blood sugar, but it was never where it should have been. Eventually insulin was added to the mix, and I quickly regained the weight that I had lost. In 2000 my PCP referred me to an endocrinologist at the Joslin Center in Syracuse, NY. There I was told that like my son, I was a Type 1 diabetic.

Sue: How were you initially treated for your diabetes?

Marc: Initially I went to my family doctor and he put me on Metformin and instructed me to test my blood at least once a day. For the first year to year and a half, the Metformin seemed to work. I slowly gained back weight but at the same time, my diabetic numbers were escalating upwards. That is when the doctor recommended that I see an endocrinologist. When meeting with the endocrinologist he said to me, “You’re not going to like this. You need to be put on insulin as of today. Your family doctor did not do you any favors.”

SueNY_MarcPAMarc: How has your life changed since being diagnosed as a Type 1 diabetic?

Sue: As I transitioned from being a caretaker of a Type 1 to a Type 1 myself, I became more conscious and sympathetic of what my son goes through every day in trying to manage his diabetes. I used to think that if he did the right thing, his diabetes would be well controlled. I came to realize that there are very many variables to diabetes that we don’t understand such as how dietary fat delays the blood sugar in rising, and stress, a simple cut or a common cold could affect the direction blood glucose numbers go.

Sue: How has your life changed?

Marc: Luckily my wife is more energetic about things that I do, things that I eat, the amount of carbs I eat, etc. then I am.   I have to be more careful about what I eat. I am a person who likes pizza, ice cream, donuts, steak sandwiches, etc. Now because of diabetes, I have to think twice. My overall control of my A1C is not as good as I would like it to be (lack of CGM). When I had a functioning CGM my A1C was as low as a 6.9 and without it I’m up at 7.9. Of course my doctor wants me back at 7 or less.

Sue: Marc, please share why you don’t now have a functioning CGM.

Marc: I did have one. It was always covered by the insurance that was provided to me by my employer. When I turned 65 and entered Medicare, my existing CGM was in need of replacement. Medicare denied coverage and I am now at Level 4 in the appeals process, trying to get Medicare to cover this needed device.

Sue: How has your life changed without the use of your CGM?

Marc: I have been told by my present endocrinologist that I am a brittle diabetic and I have been suffering from hypoglycemia unawareness (the inability to detect when my blood sugar drops to a dangerous level making it possible for me to become disoriented, combative or in the most severe circumstance, blacking out). Basically, it affects every facet of my life.

Marc: Sue, I find it interesting that you are using an OmniPod pump. I use a Deltec Cozmo which I realize is an older pump. How would you rate your OmniPod?

Sue: Excellent question Marc. The OmniPod is my first and only pump since December, 2007. Like many people, I did not like the idea of having a device attached to me. I finally came to realize after reading discussions on the ADA Type 1 board that the pump was the way to go. I chose the OmniPod over the tubed pumps because I thought it would be more user friendly. I love it and have never looked back. My son has been on the MiniMed pump since January, 2008 and he loves his pump. Different strokes for different folks.

Thanks to Marc for joining the conversation at Test Guess and Go. Please join us tomorrow when Sue from Pennsylvania and my husband Steve have an honest and insightful conversation in which they compare their experiences as the spouse of someone with Type 1 diabetes. I hope you will read it.

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If you are interested in participating in the Conversations project, click here for information.

Upcoming Conversations

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Laddie_Head SquareI am excited to preview two posts to be published this week at Test Guess and Go as part of the Conversations series.  These two blogposts are exactly what Kate Cornell and I envisioned as we wrapped up our Type 1/Type 2 Conversations and invited others to join the project.

Those of you who follow my blog have noticed that my co-bloggers, Sue from NY and Sue from PA, have been on vacation in recent months.  Sue from NY has taken several long trips and had some great family time with children and grandchildren.  Despite being busy, she has not been cured of diabetes and therefore has not permanently abandoned us.  Sue from PA had a bad fall in June that resulted in a severe shoulder injury.  Hampered by pain and the awkwardness of one-handed typing, she needed time away from the computer and her blogging suffered as a result. She did keep busy behind the scenes with her advocacy work for Medicare coverage of CGMS.

But they’re back!

Last week on the way home from a family trip, Sue from NY and her husband Steve stopped in Harrisburg, PA to spend a few days with Sue from PA and her husband Marc.  SueNY_SuePAIt was the first in-person meeting for the two Sue’s.  Inspired by the Conversations project, they decided to rope this husbands into discussing diabetes.  They didn’t interview their own spouses; they talked with the other Sue’s spouse.  The result is two very interesting conversations.  The first will be published tomorrow and highlights Sue from NY who has Type 1 diabetes along with Type 1 Marc from PA.  Their stories are remarkably similar as both were initially misdiagnosed as Type 2 because of their age.

The second conversation to be published on Thursday is between the spouses, neither of whom has diabetes.  Sue from PA and Steve from NY have a frank discussion about what it is like to be the spouse of someone with Type 1 diabetes.  Although never wavering in support of their spouses, both talk about the fears and emotional toll of being the life partner of someone with Type 1.

Please come back tomorrow to read Conversations: Two Type 1 Diabetics Have a Chat and on Thursday for Conversations: Two Spouses of Type 1 Diabetics.

Join the Conversation

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Laddie_Head SquareI really enjoyed my Type 1/Type 2 Conversations with Kate Cornell of Sweet Success: My Life with Type 2 Diabetes.  Our first foray into collaborative blogposts was a four-part series.  We had ideas for about ten posts, so I don’t think that this is the end of Kate/Laddie conversations.  But for now we’ve retreated into our respective corners with a greater understanding of what the “other type” of diabetes thinks and experiences.

When Kate and I started our project, one of our goals was to inspire others in the Diabetes Online Community (DOC) to initiate similar conversations.  Real communication is often lacking in our 21st Century world and the DOC has not been exempt from conflict and misunderstandings.  Fortunately many bloggers have become increasingly vocal about working to unite as one community regardless of medical history or type of diabetes.  (A good example of this is Kerri’s post titled Learning from My Peers.)  Together we can make progress; individually we spin our wheels.  We don’t need to agree on everything and we certainly aren’t the same.  But we can talk to each other.  We can respect each other and we can learn from each other.  We can build bridges to make the DOC a stronger community.

Kate and I hope that others in the DOC will jump on the communication bandwagon and initiate some conversations.  Type 1/Type 2 discussions are great, but don’t be limited by that combo.  How about a LADA talking to Type 1 diagnosed as a child?  How about a Type 2/Parent of a Type 1 dialog?  How about a pregnant Type 1 talking to a young T1 mother?  How about a conversation with your spouse or child?  Maybe a cat-lover and dog-owner (or would that generate too many fireworks?)  The possibilities are endless.

If you would like to participate in the Conversations project, please check out the Conversations page at Test Guess and Go.  You’ll find a few hints on how to proceed and information about obtaining the Conversations banner and graphic if you’d like to use them.  (I can easily customize the graphics to fit whatever your conversation is, so be sure to let me know what you need.)

What are the rules?

  1. Be respectful.
  2. Have fun and be creative.  If you don’t want to write a long post, consider using Storify with Tweets and/or Instagram photos.  Write limericks back and forth.  Publish email conversations.  Write comic strips.  Create vlogs.
  3. Feel free to tackle controversial subjects but don’t avoid fluff pieces that will make us smile.
  4. Choose a partner.  A familiar online friend, a new Twitter follower, a big-name blogger, a new blogger, an acquaintance from a TuDiabetes message board.  Don’t be shy and send an invitation.  The collaboration is just as important as the finished product.
  5. Don’t forget #1.  Be respectful.

If you need help or ideas, please contact me or Kate through the contact form on her homepage.  Once you’re published, send me your link and I will add it to the list of blogposts on the Conversations page.

Please help the project grow.  All you have to do is join the conversation!

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If you missed any of our Kate’s and my conversations, you can find them here:

Type 1/Type 2 Conversations: Talking about Weight

Type 1/Type 2 Conversations: Diabetes in the Great Outdoors

Type 1/Type 2 Conversations: Friends and Family

Type 1/Type 2 Conversations: Food, Glorious Food

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Type 1/Type 2 Conversations: Food, Glorious Food

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Kate_photo_RKate:  I love food, who doesn’t?  Unfortunately, I love bread way more than I love broccoli; pizza more than salad.  I will admit that my diet wasn’t very healthy through most of my adult years.  I tried, now and then, to “do better” but eventually drifted back to my usual fare.  After my diagnosis of T2 I was faced with the need to make some significant changes to what I ate.  It hasn’t been easy.

People with T2 may take oral meds, injectables and sometimes, insulin.  They may control their diabetes with diet and exercise, for a while.  The one thing that we all have to deal with is figuring out what we can eat and still control our diabetes.  Here’s where it gets really frustrating.  I have never been to a nutritionist or dietician for assistance with my meal planning.  I know that there are many, many T2s who can say the same thing.  I taught myself what to eat (and not eat).  I also know some T2s who have seen a professional to learn what/how to eat and have been amazed at some of the recommendations they’ve received.  If you participate in any online forums or FB groups, the myriad of recommendations you can receive for what you can eat is mind boggling!  “You can’t eat that.” “You should definitely eat this.” “low carb” “low fat” “lots of fat” “whole grains” “no grains” “Okra water” “cinnamon” “vinegar” “whole cows” “no meat” “bacon wrapped everything” “sugar free” “never consume sweeteners” The list goes on and on and on.  Can you blame people for being confused and frustrated?  The fact that mainstream diabetes organizations continue to push lots of carbs has always amazed me.  I am encouraged by this recent study that says that it’s better to lower carb consumption for people with diabetes.  Ya think?  I don’t push any specific way of eating for people with diabetes, that’s your choice, but I have learned that I simply cannot eat bread (even whole wheat), pasta, potatoes (even sweet), cereal (even oatmeal), crackers…so many things.  And yet, when I read “diabetes friendly” recipes online they nearly always contain these ingredients.  Heck, even “healthier” cookie recipes contain flour and sugar to a degree that makes them off limits to me.

I could go on forever on this topic.  I could write a book!  The point I’d like to make is that people with T2 simply must make drastic changes to what they eat in order to maintain good blood glucose in the long run and yet they aren’t encouraged to do that.  Yes, stopping fast food and making your own burgers at home is better but shunning the bun is better yet.  Don’t get your panties in a twist and tell me “but we can eat anything in moderation!”  Maybe you can, for a while.  I used to be able to do that too, but now I can’t.  Without insulin to lower a high glucose reading, I have to deny myself certain foods unless I’m willing to deal with the consequences.  That doesn’t mean that I’m eating cardboard.  I eat a wide variety of delicious foods; foods that take preparation and planning.  In this one area I feel that T1s have an easier time of it.  Yes, you can eat anything you want because you can bolus your insulin for the carb consumption.  I know that isn’t easy, but it’s possible.  SO jealous here.  So Laddie, what’s your take on food and how it fits into your diabetes treatment?

Laddie_Head SquareLaddie:  Last September I wrote a blogpost titled “Food” and this is one of my favorite paragraphs from that post:

Like almost everyone with Type 1 diabetes, I’ve spent my life trying to find the magical balance between food as nutrition, food as pleasure, food as a social hub, food as a deterrent to low blood sugars, and food as an emotionally-charged addiction.  Diets are prescribed like medicine with the assumption that if you play by the rules, things will work perfectly.  Anyone who has had Type 1 for more than five minutes knows that food, blood sugar, weight control, and insulin rarely play nice together and it’s hard to keep guilt out of the equation.

Reviewing that paragraph, I could easily change all of the “Type 1” references to “Type 2” and everything I wrote would still be true (except maybe the insulin reference).  Diets are handed out to people with diabetes with the implied guarantee that they are the ticket to success.  Follow the plan and you will have good blood sugars, weight loss, no diabetic complications, and so on.  Unfortunately diets are hard to follow and with diabetes, what you eat is only one piece of the blood sugar puzzle.

When I was diagnosed in 1976, I was given an Exchange diet with a prescribed number of bread, vegetable, fruit, protein, fat, and dairy portions for each meal and snack.  Because of the limitations of my once-a-day insulin shot, that diet really meant:  “Eat all of the time and hope to avoid passing out from a low at 4:30 every afternoon.”

Over the next 25 years, newer insulins led to more flexibility in the our diets and all of a sudden with carb counting, we could eat like a “normal” person.  We were told that “a carb is a carb” and birthday cake was allowed as long as it fit into our nutrition plan.  The  “heart-healthy” diet mandated that fats were bad and carbs were good.  More bread.  More pasta.  The fact of the matter is that as someone with Type 1 diabetes, I can’t match the digestion of carb-laden foods with the peaks and duration of my insulin.  I go high; I go low.  I eat carbs; I want more carbs.  I feel guilty because my numbers aren’t good and I’m exhausted from rapidly changing blood sugars.  That’s the glucocoaster life.

Some people, myself included, are looking for ways to get off the glucocoaster and these days you see many options for healthy eating with diabetes.  At one extreme is Dr. Bernstein’s Diabetes Solution: A Complete Guide to Achieving Normal Blood Sugars with the recommendation of a diet high in fat/protein with a carb limit of 30 grams per day.  At the other extreme are athletes who eat thousands of calories and 400-600 grams of carbs per day.  In the middle are people doing their best to follow diets prescribed by their medical professionals with varying carb targets and varying degrees of success.  There are people with diabetes following the Paleo diet, others eating gluten-free, and some paying no attention at all.  We’re all searching and realizing that there is no easy or perfect diet.

I personally believe in Bernstein and have dramatically reduced my carb consumption in the last 10 years.  Unfortunately as I write that, I am having a vision of chocolate-covered donuts (a constant theme in my blog).  My current BG is 83 (Bernstein nirvana!).  But it is the result of multiple boluses after afternoon highs in the 200’s from eating a bowl of cherries.  Okay, it was two bowls….  I pre-bolused an appropriate amount of insulin and still spiked.  I followed the rules, got a bad result, and ended up feeling guilty.  I sometimes wonder if eating a mostly low-carb diet has made me more sensitive to carbs when I do eat them.

Kate is envious of those of us with Type 1 who are able to use insulin to incorporate more carbs into our lives.  I can’t imagine seeing a high blood sugar and not having a tool to bring it down.  At the same time insulin is not a fix-it-all and introduces the fear of severe lows without always eliminating outrageous highs.  Insulin or not, eating with diabetes is hard.

Food Glorious Food_Nutella

Kate_photo_RKate:  We are so similar!  Your comment about donuts really hits home.  I know what I should eat and often feel very satisfied with lower carb meals, and yet the call to eat the carbier foods is never far away.  Sigh.  It’s also interesting what you said about possibly being more sensitive to carbs now that you’ve lowered your carb intake.  I feel the same way.  Two summers ago I tried an extremely low carb diet for a month and had great success.  Once I tried to slowly add some carbs back into my diet (like a bit of bread or cereal) my blood glucose went through the roof!

One of my frustrations has been my HCP’s reluctance to let me try insulin.  My A1c is quite good, even though my fasting numbers are in the 130s at best.  I am better controlled than most of her patients and so my concerns over higher numbers are dismissed.  I’m told to “lighten up” and eat a more “normal” diet but I’m commended for my better numbers which wouldn’t exist if I ate more normally.  I will admit to having dealt with burnout recently mostly because I can’t just eat whatever I want.  I’m tired of constantly thinking about food.  Like you Laddie, it’s a daily challenge.  I’ve actually “lightened up” a bit and have been allowing myself to eat things I normally wouldn’t eat and doing it (mostly) without guilt.  I feel better mentally but my numbers aren’t so great.  How do we find the balance we need between eating a healthy diet most of the time, allowing for splurges now and then and keeping the amount of medications we need to take at a minimum?  I could eat whatever I want, ruin my good numbers and be allowed to add insulin to cover my carbs.  Is that the right thing to do?  I don’t think so.

I’ve been told by a D parent online that it would be nice if their child “only had to stop drinking soda”.  I hope that this conversation shows that living with T2 isn’t that simple.

Laddie_Head SquareLaddie:  Kate is right when she indicates that the best diet for someone with diabetes is often a compromise between nutrition/physical health versus emotional health/guilt-free living.  Does that mean that we have to eat junk food to be mentally healthy?  I hope not, but most of us enjoy sweets and carb-laden foods because they are delicious and probably addictive.  Food is the centerpiece of many social functions and we want to be part of the crowd.

My mental health is the best when I follow my lower-carb diet and enjoy mostly in-range blood sugars.  For whatever reason, the rewards of that lifestyle aren’t sufficient to keep me on the straight and narrow for long.  So I try to accept deviations from my “ideal” diet to avoid a life mired in guilt.  At the same time I find that every time I return to a lower-carb diet, I seem to be able to stay on it longer than the last time.

Food is delicious.  Food is fuel.  Food is fraught with temptation.  We’re bombarded with mixed messages from medical professionals and popular media about what constitutes a healthy diet.  I wish that I had great words of wisdom for everyone with diabetes.  I don’t.  My only advice is to keep learning, be open-minded, and do your best.  And try again tomorrow.

Kate_photo_RKate: It’s obvious from this conversation that food is big in the lives of people with diabetes, despite their type.  It is a struggle for most, one that will never be easy I’m afraid.  But hey, food isn’t easy even when you don’t have diabetes.

This is the last conversation in our series.  I hope you’ve enjoyed them and that they have opened your eyes or prompted conversations between you and others.  Next week we will be publishing a “wrap-up” post inviting you to start your own conversations.  We’ll give you some suggestions and Laddie has generously offered to share the graphics that she has created.  (Aren’t they great?)  Thank you for joining us in our effort to knock down some of the barriers between types.

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If you missed the first three posts, you can find them here:

Type 1/Type 2 Conversations: Talking about Weight

Type 1/Type 2 Conversations: Diabetes in the Great Outdoors

Type 1/Type 2 Conversations: Friends and Family

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This post was originally published on July 29, 2014 on Kate’s blog, Sweet Success: My Life with Type 2 Diabetes.