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!
- The illnesses I live with are: Type 2 Diabetes & Congestive Heart Failure
- I was diagnosed with them in the year: 2008
- 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.
- 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.
- 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”.
- 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.
- My favorite medical TV show is: I don’t really have one.
- 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…
- 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.
- 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.
- Regarding alternative treatments I: If by alternative treatments you mean cinnamon, miracle diets, and snake oils, I’m not a subscriber to the philosophy.
- 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.
- 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.
- 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.
- The hardest thing to accept about my new reality has been: The overwhelming financial burden that has come with it.
- 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.
- The commercials about my illness: Annoy the hell out of me.
- Something I really miss doing since I was diagnosed is: If anything, I miss not constantly thinking about my health. It gets old.
- 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.
- 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.
- 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.
- 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.
- Want to know a secret? One thing people say that gets under my skin is: “You don’t look sick.”
- But I love it when people: Actually take an interest in how I’m doing, and show that they genuinely care.
- My favorite motto, scripture, quote that gets me through tough times is: “A little heart can do big things.” I’m living proof.
- 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.
- 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.
- 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.
- 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!