30 things about Mike’s Invisible Illnesses

Posted by on Dec 2, 2014 in Diabetes & Emotions, General | 2 comments

A couple of years ago, during Invisible Illness Week, I took part in a writing challenge that asked participants to share  30 things about the invisible illness with which they live.  My original response was posted over on my blog, My Diabetic Heart, and it was recently featured by the good folks over at Diabetes Daily.

Like I said, it’s been a couple of years and there have been some changes in my routine and way of thinking.  So, it’s time for an update.  Here we go!

  1. The illnesses I live with are: Type 2 Diabetes & Congestive Heart Failure
  2. I was diagnosed with them in the year: 2008
  3. But I had symptoms since:   Longer than I really care to admit.  Looking back, I probably had the symptoms of type 2 diabetes for at least a few years before I developed the yeast infection that led me to the doctor.  I’d been experiencing some chest pain, shortness of breath, fatigue, etc… related to the congestive heart failure for a while too.  As with so many people, I didn’t have insurance and couldn’t afford a doctor visit.
  4. The biggest adjustment I’ve had to make is: Has been in my attitude and outlook on life.  And I’m thankful that it has changed for the better.
  5. Most people assume: That because I’m a big guy I must have given myself Type 2 Diabetes and Congestive Heart Failure.  And you know the saying about the word “assume”.
  6. The hardest part about mornings are: Is that my mornings are really afternoons.  I work nights. And working nights with diabetes and congestive heart failure is a challenge.  You might even say it’s not for the faint of heart. Pun intended.
  7. My favorite medical TV show is: I don’t really have one.
  8. A gadget I couldn’t live without is: My meter.  My cell phone is a close second. I use it to keep track of all of my doctor appointments, med refills, etc…
  9. The hardest part about nights are: Well, I work nights as a professional code monkey for a newspaper. So, I’ve got thoughts about diabetes, heart failure, etc… racing around while I’m working through complex algorithms needed to make things work properly and what I end up with is a potential disaster topped off with a migraine headache.   By the way, chronic migraines are another invisible illness I deal with.
  10. Every day I take 10 different oral medications, some multiple times a day, take one injection of Victoza and one injection of Lantus, multiple injections of Humalog, use an asthma inhaler, and a nasal spray. And the cost of all of those medications and related supplies, even with insurance, is astronomical.
  11. Regarding alternative treatments I: If by alternative treatments you mean cinnamon, miracle diets, and snake oils, I’m not a subscriber to the philosophy.
  12. If I had to choose between an invisible illness or visible I would choose: I’m torn on this.  Some days, I’m glad that my conditions are invisible because it’s easy to conceal them on the days when I just don’t feel like talking about it.  On the flip side though, there are many days when I wish people could see the hell that’s going on in my body.   So people could understand that life with type 2 diabetes isn’t easy and that congestive heart failure is scary as hell.
  13. Regarding working and career:  Honestly, I work for the insurance, and for the money to pay the co-pays forced on me by the insurance company.  And I’ve been doing this work thing in the same place for 8 years now. I guess you can call that a career.
  14. People would be surprised to know:  That prior to my diagnoses, I really didn’t care about Twitter. I had no use for it, and thought it was just another trendy thing that would fizzle. And after using Twitter and other social media and being constantly plugged in for nearly 6 years, I found myself feeling tired of it all and decided to take a step back to focus on my needs.
  15. The hardest thing to accept about my new reality has been: The overwhelming financial burden that has come with it.
  16. Something I never thought I could do with my illness that I did was: when I was diagnosed with Congestive Heart Failure, I gave up all hope of ever being able to fly on an airplane.  Everything I read and heard indicated that I shouldn’t it.  I’m so thankful that I’ve had that opportunity, and that all of my flights since were taken to meet with my DOC friends.
  17. The commercials about my illness: Annoy the hell out of me.
  18. Something I really miss doing since I was diagnosed is:  If anything, I miss not constantly thinking about my health.  It gets old.
  19. It was really hard to have to give up:  You know, I don’t believe that I’ve given up much at all.  Well, not unless you count giving up my sanity, and I didn’t have much of that to lose to begin with.
  20. A new hobby I have taken up since my diagnosis is: Traveling to meet strangers I meet on the internet.  And I do so at the drop of a hat.
  21. If I could have one day of feeling normal again I would: Normal scares me.  Besides, I can’t change what’s happened in the past. I can only make the best of the days I have yet to live.
  22. My illness has taught me: That life is precious and short. That it is OK to stop and think about what is best for ME.  I just need to remember that and actually do it.
  23. Want to know a secret? One thing people say that gets under my skin is:  “You don’t look sick.”
  24. But I love it when people: Actually take an interest in how I’m doing, and show that they genuinely care.
  25. My favorite motto, scripture, quote that gets me through tough times is: “A little heart can do big things.”  I’m living proof.
  26. When someone is diagnosed I’d like to tell them: That there is great life after diagnosis.  They are loved.  And they are not alone.
  27. Something that has surprised me about living with an illness is: that so many good things have come to my life because of something bad.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a hug and tell me that she loves me as she has for 12 years.
  29. I’m involved with Diabetes and Heart Disease advocacy because: People need to know what life is like for those of living with type 2 diabetes and congestive heart failure.  People need to be aware of the connections between diabetes and heart disease. And if it’s going to be, then it’s up to me!

I believe that every diagnosis story is important. And sharing those experiences can help others who may find themselves going through the same things. There is comfort in know that you are not alone in your fight. There are others who “get it”.

      30.  The fact that you read this list makes me feel: That you care.  Thank YOU!

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

Posted by on Dec 1, 2014 in General | 1 comment

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.
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
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The Truth about Type 2 Diabetes

Posted by on Oct 21, 2014 in General | 2 comments

(Originally posted on my personal blog.)

  • You did not “do this to yourself”.
  • Yes, your lifestyle before your diagnosis most likely helped you toward developing type 2 diabetes. (There are ways to develop type 2 that have nothing to do with weight etc., but they are the minority.)
  • Go back and read the first listed item.
  • You can’t develop type 2 diabetes (or any type) by eating sugar.
  • There is a genetic component to type 2. If you don’t have that genetic component, you will likely not develop type 2, regardless of your weight, level of activity or love of Snickers.
  • You can thank your ancestors for your diagnosis. (Thanks Grandma!)
  • You should dramatically lower your consumption of processed and junk foods once you’re diagnosed. (You don’t have to do that cold turkey, but the sooner the better for you in the long run.)
  • You should dramatically lower your consumption of processed and junk foods whether you have diabetes or not.
  • Some people can eat bread/potatoes/pasta when they have type 2 diabetes. Some cannot.
  • Some oral diabetes medications cause some nasty side effects. If you’re about to start taking a medication, don’t ask others if you will have side effects. We don’t know. The best way to find out is to try the medication and see how you react.
  • There are no magic pills, miraculous diet or voodoo that will make your diabetes go away. You need to learn to live with it.
  • Everyone is different, and so is their diabetes.
  • Regular exercise makes a big difference in your ability to manage your diabetes.
  • Weight loss should not be your goal; a healthier lifestyle should be the goal. Eat better and exercise more often and the weight will most likely decline.
  • Losing weight when you have type 2 diabetes isn’t easy. Don’t focus on the scale, unless it’s weighing your food.
  • Don’t ask others what the best fruits are for people with diabetes. The best fruit for you to eat is the one that doesn’t cause your blood glucose to raise too high. Only you can determine that.
  • Go back and read the first item in this list.
  • Your goal should never be to “get off the pills”. Never. Your goal should be to change your lifestyle so that you can do your best to manage your diabetes. Better health, despite diabetes, should be your goal and medications can help you achieve that goal.
  • You cannot get rid of diabetes. Learn how to live a good life with it.
  • If you take insulin, don’t fall into the trap of think you can still eat that junk food. You can, but it’s not your best choice.
  • Diabetes, any type, can cause you to fret, focus on the wrong things, whine, complain and generally feel like you’ve been given a raw deal. You have, but life with diabetes can be just as good as it was before, maybe better.
  • It’s ok to fret, focus on the wrong things, whine, complain and generally feel like you’ve been given a raw deal. Just don’t live there.
  • If diabetes causes you to be depressed, seek professional help. According to this paper on the International Diabetes Federation webpage (http://www.idf.org/webdata/docs/PIIS0168822710000471.pdf), in their study,“… about 45% of all diabetes patients had undiagnosed depression.”
  • Connecting with other people with diabetes helps, whether it is in person or online.
  • Food is not your enemy. Don’t give it so much power over you.
  • There are lots of yummy things to eat that won’t cause you grief with your blood sugar.
  • There is a huge stigma attached to diabetes. People can be mean and hurtful. Either ignore them or try to educate them, but don’t let them undermine your hard work.
  • Go back and read the first item.
  • Yes, you can have that dessert.
  • Don’t whine if your blood sugar rises too high after eating said dessert. It’s your choice, so deal with the consequences.
  • Don’t feel guilty…about your diagnosis or the food you eat or your lack of exercise. You know what you should do but that doesn’t mean you’ll do it all the time. Give yourself a break!
  • Don’t ask others how many carbs you should eat. We don’t know. Work with your dietician (if you’ve been lucky enough to see one) and experiment with your meter.
  • If your dietician or health care provider has you doing/eating something that doesn’t seem to work for you, speak up!
  • “As physicians, we counsel, we coach, we prescribe, we cheerlead. But the only person who treats diabetes is the person who has it.” Physician Daniel Lorber
  • People with diabetes are just like people without diabetes. Some are heavy. Some are thin. Some exercise a lot. Some don’t. Some love sweets. Some hate chocolate (!!). Some are liberal. Some are conservative. All of them are just people who should exercise and have to pay closer attention to food, but shouldn’t everyone?
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From Strangers to Friends – #MasterLab

Posted by on Jul 11, 2014 in General |

(This blog pot was originally published on my blog, Diabetes Ramblings, on Sunday, July 6, 2o14.)

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.

MasterLab

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.

SueKate
(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.

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The Flawed One-Size-Fits-All Approach to Type 2 Diabetes

Posted by on Jun 28, 2014 in Management & Care, Treatment & Medication |

The more I observe the general approach being employed by many in the medical and diabetes health communities to address the ‘diabetes epidemic,’ the more I wince.

At the heart of the matter, there seems to be a general undercurrent of belief regarding the condition: diabetes type 2 is a straightforward situation, so just exercise more, and eat less. I get that vibe a lot when I watch TV, read the news, or read the blogs of many a well-meaning health professional and health advocacy organization. While this is generally true in principle and the advice and ideas of many of these folks are helpful, one comes away with the impression that they consider diabetes to be a one-size-fits-all situation, where people are simply undisciplined. This is a nearsighted perspective that is unhelpful for the patient – it fails to truly address the multi-dimensional psychological aspects of a person living with the condition, and thus, their ability to truly embrace the challenge.

What do I mean by this?

What I mean is that diabetes is simply a symptom of a problem. Let’s think about this situation for a moment. Would we tell an anorexic or bulimic patient who has developed heart disease to simply start eating more, or to simply stop throwing up? No. We understand that these behaviors are symptoms of a larger problem – that there are psychological challenges at work, creating disordered eating in this person’s life. We can tell a person with anorexia how undereating will kill them, or a bulimic how throwing up will damage the enamel of their teeth – but no amount of information is going to stop the disordered behavior. There needs to be intense psychological intervention in order to address the warped perceptions in the patient’s life.

This is just one example of how a chain of events can lead to chronic condition in someone’s life. Every ‘someone’ ought to be treated in ways which are tailored to their life experience. Now, while not all persons with diabetes are obese, the fact of the matter is that the majority of persons with type 2 diabetes have some disordered eating, are overweight, or are obese, and the reasons for this need to be addressed.

  • There are some folks who may have gained some weight simply because they are very busy — be it busy parents with families, or busy professionals – and they might just need some help tweaking their habits. These types of folks could benefit from just a bit of guidance on how to readjust, and minimize just reaching for the convenient meal or junk food snack;
  • There are folks who’ve gained weight due to illness, medications, or immobility, and could use some help juggling the situations; and
  • There are some folks who genuinely have disordered eating, and have gained massive amounts of weight: folks who use food as a form of comfort, as a form of treating pain or depression, as a form of coping with life much in the same ways a person might use drugs or alcohol, etc.

Whatever that person’s reason to struggle with disordered eating which has lead to weight gain – it needs to be addressed first. We recognize that disorders like anorexia and bulimia are dangerous, and not just a matter of ‘eating more,’ and stopping the dangerous habits. So why don’t we recognize that a large number of people who are obese also have a deadly eating disorder and are in need of psychological attention? Would we throw an eating plan at folks with anorexia, or bulimia, and expect them to fix themselves? Or would we give them much needed psychotherapy, and coaching, to help them succeed?

We need to understand that type 2 diabetes can affect a large variety of people who are in many different walks of life, and with many different social challenges. Assessing the patient in a wholistic way – addressing the level of psychosocial support and therapy that a patient might need in order to overcome their health challenges will be ESSENTIAL to managing the diabetes epidemic. There is no amount of healthy foods, exercise facilities, and information that can fix a person whose mind is warped by the thoughts and cycles of disordered eating. Therapy is needed, and it must not be ignored.

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Food diaries and honesty

Posted by on Jun 17, 2014 in Eating & Cooking |

People with diabetes are constantly aware of food, that’s a given. We need to pay attention to what we’re eating, how many carbs, when we’re eating and longing for foods we crave but probably shouldn’t eat. I have kept food journals in the past to get a grip on how different foods affect my blood sugar. I find them to be helpful. I was somewhat careful to write down what was in a particular meal (along with before and after glucose readings) but I never spent time writing down everything I ate in a day. A recent attempt to pinpoint another health issue, separate from my diabetes, was not only eye-opening but a bit uncomfortable.

I’ve been having “gut issues” for months now. I got to thinking about the possibility of lactose intolerance since I have family members who deal with that. Pretty much the only dairy I eat these days is cheese and a bit of cream in my coffee  but I figured it was worth a try. A food diary seemed like a good idea because, who knows, it might be something else I’m eating that’s causing me grief. If I just kept track of everything I ate for a week maybe my doctor could look at that and say, “Well there’s the culprit!” So I began. I lasted two days.

Have you ever really paid attention to everything you eat? Regardless of the fact that I think about food all the time, I never realized just how much I was eating. It was embarrassing. When you have to stop and write down what you’re eating, it puts a huge spotlight on that snack you’ve decided to eat. Knowing that I had to “own up” to eating something, I would either change my mind and eat something “safer” or else eat it anyway and then feel guilty. I even considered not writing something down just so no one else would see what I’d done! Talk about feeling like Big Brother is watching. It was awful.

I’m writing this to bring up the point that, even though we may have made dramatic changes to what we eat on a daily basis, even though we may be committed to a healthier lifestyle, even though we “know better”, it can be so easy to derail our good intentions with mindless munching. This is not to say that we can’t have a treat now and then, but it would be in our best interest to make it a planned treat and curtail the munching for munching’s sake. My short experiment in food journaling may not have been the success I was hoping for but it did cause me to pay closer attention to what I’m eating. I’m much more aware now and have been making better choices. What could you do to improve your diet?

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Type 2s at Friends for Life? MasterLab!

Posted by on Jun 8, 2014 in General |

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.

MasterLab

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.

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