The Endo Encounter

Posted by on Jul 21, 2015 in Diabetes & Emotions, General, Management & Care, Treatment & Medication |

(Originally posted at My Diabetic Heart.)

So, last week I had my first appointment with an endocrinologist.  For the last six and a half years, my diabetes care has been overseen by my primary care doctor, but due to some struggles I’ve had and changes that I wanted to make, we agreed it was time for a referral to an Endo.  Initially, I was excited about the change, but as the appointment grew nearer, my nerves got the better of me and panic set in.  I was Expecting the Inquisition.

Well, I survived that appointment.  In fact, it went much better than I feared it might.  I do have some reservations about it, but I’ll get to those in a bit.  First, the good parts.

Doc D. is a young guy, maybe 34 years old at most.  I’m 31, so we’re close in age.  He was attentive, listened, and took the time to get to know me and my situation.  He asked a lot of questions and documented my responses as we went along.  I appreciated how thorough he was, and the fact that he took the time to process my information and put his recommendations in writing before he tried to explain his thinking behind them.

He revised my meal time insulin regimen, giving me a coverage plan that is more logical and better suited to my needs.  That should help a lot.  He left my Lantus and Victoza doses alone.   He also prescribed the oral type 2 drug Jardiance for me to try, and suggested that I add a coenzyme Q10 supplement to help strengthen my heart and increase my energy levels.

Doc D. also said he wants to check my pancreas output with a c-peptide test.  He was a bit surprised that I’d never had one.  And since he was ordering tests, I requested that he order GAD65, IA-2, and insulin auto-antibody tests while he was at it.  I practically begged my PCP to run those tests, but they were never done.  Now, they will be.  So, I have that bloodwork to look forward in two months.

He took his time and didn’t rush through the appointment.  That was huge in my mind.

And…. AND…. There was no mention of my weight at all.  Let that sink in for a second… The doctor did NOT focus on my weight at all.  I’m really not use to that.  I was honestly kind of shocked.

His focus was more on nutrition.  Eat better, the benefits will follow.  Hey, I agree with that logic.  I know it works.  But the means of getting there are where some of my reservations begin.

Doc D. is something of a paleo diet evangelist and strongly “encouraged” me to adopt that diet and to severely restrict my carb intake.  He wants me to give up a lot of things that I’m just not sure I’m willing to ditch completely.  I have a real problem with having to deprive myself of the things I love, and I have no desire to go back to starving myself like I did for months after I was diagnosed.  While the results at that point may have been beneficial for a while, it ultimately lead to a major crash and burnout.  I don’t need that again.  I’m willing and wanting to make some changes, but I’m not sure the paleo diet bible is one that I’m willing to thump.  And I’m certainly not going to be beaten over the head with it.

The other major reservation that I have concerns the drug Jardiance that I mentioned above.  I had never heard of it, but through some research I’ve learned that it’s basically Lilly’s version of Invokana.  It’s an oral type 2 drug that is supposed to help my body dump excess sugar when I take a leak.   I’ve heard mixed things about that class of drugs and I’m incredibly leery about starting it.

I have two issues with this.  One, yeast infections are listed as common side effect of this medication.  If you’ve read my story, you know that’s what lead to my diagnosis in December 2008.  It’s understandable that I wouldn’t want to venture down that road again.  Secondly, do I really need another medication on top of what I’m already taking to treat my diabetes?  I’m already taking Victoza, Humalog and Lantus.   I think that’s enough. And I’ll spare you a rant about the additional monthly cost of that medication and the CoQ10 supplement.

So overall, the appointment went well.  I have some strong reservations about some things, but there were some really positive things that came out of it.  I’ve got some clearly defined goals to work on as far as my A1C goes, a better insulin regimen, a new supplement that seems to be helping to boost my energy, and hopefully a doctor who will be the same at the next visit as he was at the first.  He listened, he was thorough, and didn’t leave me feeling judged.  I see him again in September.

Time will tell.

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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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Mike’s Diagnosis Story

Posted by on Aug 4, 2013 in Diagnosis Stories | 2 comments

This is an edited version of my story that I’ve shared on my personal blog and elsewhere.

I was diagnosed with Type 2 Diabetes on Dec. 29, 2008, and Congestive Heart Failure on December 30, 2008.  The road to each diagnosis began about a month earlier.

I initially went to the doctor for what I thought was a yeast infection.  Turns out I was right, and given my weight, family history, and some other factors, the doctor suspected that I might be diabetic.  My blood pressure was rather high at the time, too.  Again, given family history, weight, etc…, the doctor decided to order a battery of tests to check the condition of my heart as well. So, after a month of testing, waiting, and worrying about what could possibly be wrong with me, my doctor called me in to share all of the results.

My A1C at diagnosis was 9.6.  My heart was functioning at 30% – 35% capacity, and there was a blockage in one of the arteries.

Hearing that I was diabetic didn’t really surprise me.  As I said, there were several factors in play at the time, as well as what in hindsight were some rather obvious symptoms.  What scared the hell out of me was when the doctor started talking about the results of the heart tests.  I had lost my father, 47, to a massive heart attack just 7 months before.  I was 24 and seemed destined to meet the same end.

After I was diagnosed, I was put on a pretty strict 1,500 calorie diet and an insane medication regimen to help both of my diagnoses.  And it helped a lot.  I lost about 40 pounds (mostly water weight) within the first few months after my diagnosis, and had lowered my A1C from 9.6 to 6.5.  That was 4 years ago.

Today, things are a bit different.  For one, I gave up on the strict diet because I felt like I was starving and depriving myself all the time.  I’m eating healthy foods and the things that I enjoy in moderation.

After trying several oral medications with limited success, I’ve switched to injectable medications.  Currently, I’m using Victoza in the morning and the long acting insulin Lantus at night.  I also have the fast acting insulin Novolog to use with a sliding scale when I need it.

I’m also exercising on a regular basis and have joined a gym.

My last A1C was 6.5, and my heart is functioning at around 47%.  Much better than it was.

Overall, I’m much healthier now than I was at the time of my diagnosis.  And so far, I’ve beaten the odds that were against me.

I would be lying if I told you that life with type 2 diabetes is a walk in the park.  It’s not.  There are days when it can be extremely difficult to manage despite my best efforts.  On the flip, there are days when things are easy going.  As with all things in life, you have to take the good with the bad.  And you do get used to it over time.  You don’t like it, but you get used to it.  The important thing to remember is that no two people experience type 2 diabetes in the same way and, as such, what works for me may not work for you.

I’ve been completely open about my diagnosis from the beginning.  Family, friends, my employer and coworkers, you name it.  They all know.  I’m not ashamed of it, so why hide it?  I even started a blog, www.mydiabeticheart.com, to tell people what it’s like to live with type 2 diabetes and congestive heart failure.

Of course, I’ve gotten a lot of the annoying, uneducated reactions that people diagnosed with any type of diabetes receive.  From comments about my weight to eating too much sugar, I’ve heard them all.  Ultimately, telling people around me of my diagnosis was a matter of safety.  At least one person around should know about it and be able to help in the event that I have a problem.

It’s important to remember that I can do anything that my friends can.  Sure, I may have to plan for meals and make adjustment here and there to fit my needs, and I may need to take a break and check my blood glucose while out, but I can still do anything my friends can.

Just make the most of the life and health that you have.  Live each day to the fullest, take care of yourself.

There is great life after diagnosis.  Live it!

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There’s More to Me

Posted by on Jul 15, 2013 in Diabetes & Emotions | 5 comments

No matter where I’m going, or what I’m doing, my health problems are always with me.  Type 2 diabetes and congestive heart failure impact pretty much every aspect of my life in some way or another.  While that may be the case, it is also true that I’m not merely a person with diabetes and heart problems.  There’s more to me than that.

I’m a son, a brother, a nephew, a grandson, and a boyfriend.  I’m fortunate to have a mother who’s always there when I need her, even if it means having to drive 250+ miles to get to me.  I have a younger sister who always asks when I’ll be coming to visit.  I have an aunt and uncle whom I can’t thank enough for everything they do for me and the rest of the family, and a grandmother who has, quite literally, been there for me from the beginning; she helped deliver me.  And last, but certainly not least, I have a wonderful girlfriend who has stuck with me through the good times and the bad times for over 10 years.  April & I met on move-in day at the beginning of our freshman year of college, and have been together ever since.

I’m an educated man, and an employee.  I earned a Bachelors of Science in Internet Technologies from Indiana Tech, and work as a systems guy for a morning newspaper.  Being a code monkey is both a hobby and my means of paying the bills.

I’m an artist, a photographer, and a writer.  I love to draw all sorts of things.  Landscapes, still-lifes, and portraits are my favorite things to draw.  And that transfers into the photographs I take as well.  I love taking photos of nature; flowers, animals, rivers, and clouds.  Many lend themselves well to the poetry and stories that I write from time to time.

And believe it or not, I haven’t always been as open and outgoing as I am now.  I’ve always been a rather private person, almost a hermit really.  I know, it’s probably hard for some of you to wrap your head around what I just said, considering how forth coming I am about things in my blog posts and tweets.  Nevertheless, it’s true.

So, what influenced that change and got me out of my shell?  Being diagnosed with Type 2 Diabetes and Congestive Heart Failure! Like I said, they impact every aspect of life, and they change perspectives.

And I like to think it’s changed mine for the better.

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Medical Jewelry and Emergency ID Cards

Posted by on Jul 1, 2013 in Management & Care | 3 comments

It should be abundantly clear to everyone by now that, when it comes to type 2 diabetes and congestive heart failure, I’m definitely “out”.  I mean, I write for two different blogs, My Diabetic Heart and The Type 2 Experience, and I talk about it frequently both online and offline.  That openness has been something of a hallmark mine since I was diagnosed in December 2008.

Something that came to light when I started my journey was the question of what would happen if I were to find myself in a situation where I couldn’t speak for myself.  How would someone be able to find out that I have type 2 diabetes and CHF, and what to do for me, if I couldn’t tell them?

The solution was simple: medical jewelry and emergency identification cards.

Initially, I doubled up on the medical jewelry; I had both a dog tag necklace and a custom made bracelet.  I know that may sound like overkill to some, but it was during a time when I was dealing with a lot of anxiety related to my heart problems.  It made me feel more secure having them on when I left home.

old-medicaljewelry

My first bracelet and necklace.

My first dog tag came from American Medical ID.  It had a large medic alert symbol and my diagnoses on the front, and had my name, an emergency contact, an abbreviated medication list, and instructions to look for the emergency ID card in my wallet on the back.  The emergency ID card contained additional information about my diagnoses, all of the medications that I was taking at the time, my doctor’s contact information, a list of allergies, and last but not least, a list of emergency contacts.

My bracelet wasn’t your typical medical alert bracelet; I really didn’t care for the standard ones found in the drug stores and wanted something unique to me.  I ended up visiting the Things Remembered store in the local mall and had something made there.  It was a simple black rubber band with stainless steel accents and a watch style clasp, and the center piece had the medic alert symbol engrave on it, along side my diagnoses.  I really liked it.  It got the job done and had the added bonus of being something that people noticed and asked questions about.

You know what that meant, right?  It provided more opportunities to talk about type 2 diabetes and congestive heart failure.

new-medicaljewelry

The broken bracelet and the new necklace.

As my situation and tastes have changed over the past few years, I’ve acquired new jewelry and updated my emergency ID cards.  I’ve worked through a lot of the anxiety that I mentioned before and currently only wear the new necklace I bought last month after my bracelet broke for the second time.  Admittedly, it does feel weird not having the bracelet on my wrist, but as long as I have some sort of ID on I’m cool with it.

While I hope and pray that I’ll never find myself incapacitated and needing my medical jewelry and emergency ID cards to speak for me, I know that it is a real possibility and therefore consider them a worthwhile investment.

The way I see it, it’s a little bit of money for a little peace of mind.  Not just for me, but for my loved ones.  They are worth it.  I am too.

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