Invisible Illness

Diabetes Hardware and Supplies

30 Things About My Chronic Illness

I hate calling diabetes an illness. It implies that I am sick. I feel like sick should be reserved for people that are in dire straights, in need of immediate medical attention. We’re all patients in some way, shape, or form, but not all the time, and certainly not every day. Still, there are chronic conditions that some of us have to operate with, and in honor of Invisible Illness Week (which was actually last week, but humor me anyway), here is a list of things about mine that maybe you didn’t know.

1. The illness I live with is: Type 1 diabetes. Simply put, my body does not produce insulin. Not even a little. Not even at all.

2. I was diagnosed with it in the year: May 11, 1981

3. But I had symptoms since: I was two years old when I was diagnosed. You see, what had happened was I was minding my own business out in my yard, playing with my ball, just doing my thing. Then this girl comes along with her milkshake, and all these other boys showed up in the yard. Next thing I knew, I had diabetes. True story.

4. The biggest adjustment I’ve had to make is: I make adjustments with diabetes every single day. It’s a disease that requires near constant adjusting. I have to make adjustments in the amount of insulin I take based on what I eat, how active I am, what kind of activity I am doing, if I am sick, and sometimes for no reason at all. Every single day is different with diabetes, and the biggest adjustment is accepting that life is not scripted.

5. Most people assume: That if I’m having a low blood sugar, I need insulin. That is exactly what I do NOT need when I’m low! Insulin is a hormone responsible for lowering blood sugar, not raising it. Do not touch my insulin pump…EVER. If I am low and need your assistance, I need you to help me get something in me that is easy to chew and swallow that has glucose or sugar in it to get my blood sugar up fast, such as glucose tabs, juice, or even a regular Coke (not Diet!). If I am unresponsive, or you cannot get me to cooperate, please don’t hesitate to call 911 and ask for help. I’ll thank you later.

6. The hardest part about mornings are: Everything. I hate mornings. Especially before I’ve had my coffee. Sometimes the grumpiness is exaggerated by an early morning low or high blood sugar, making me even more…um, difficult. See #5 above for what you should do if I’m low.

7. My favorite medical TV show is: House. But that is primarily because of Olivia Wilde. (What? There’s more to life than just diabetes!)

8. A gadget I couldn’t live without is: My blood glucose meter. I could live without my pump (if I absolutely had to), as long as I have some way to inject insulin. And I could live without my CGM (Continuous Glucose Monitor) if I had to. All of these pieces add up to optimal diabetes management (for me, YDMV), and I hope I never have to live without any of them. But without my meter, I would have no idea what my blood sugar is, and I would have no way of knowing what action I need to take to manage my diabetes effectively. In essence, without my meter, I would be blind. (Diabetes pun not intended.)

Diabetes Hardware and Supplies

9. The hardest part about nights are: Sleeping. Not only do I feel like sleep is the single most biggest waste of time ever, it is also dangerous for a person with Type 1 diabetes because it is when we are most vulnerable. Sleep is the time when our blood sugar can drop or rise without our being aware, and without the ability to correct it. Too many people, adults and children alike, have been lost to Dead in Bed Syndrome. This is reason enough for why we need a cure…NOW.

10. Each day I take no pills & vitamins. (Just insulin. And awesomesauce.)

11. Regarding alternative treatments I: The treatment for Type 1 diabetes is insulin and monitoring your blood sugar closely, period. The alternatives are health complications and death. I have full faith that science will one day deliver a cure for diabetes. Until then, no amount of exotic fruit or juice from a berry whose name I can’t pronounce is going to get us there. We absolutely must take insulin to keep us alive and well. Still, insulin is not a cure. Neither is cinnamon.

12. If I had to choose between an invisible illness or visible I would choose: Definitely invisible. I appreciate the choice of how visible or invisible I want my diabetes to be. Though I normally don’t, if I choose to hide my diabetes, I can.

13. Regarding working and career: I’m a medical librarian, a diabetes blogger and advocate, I teach, I speak, I travel, and I do anything that anyone else can…and I do it with Type 1 diabetes. I would love to someday have a job working closer with diabetes, on a diabetes hub, maybe with a company that focuses on diabetes, or that will work with me to work with others with diabetes. I absolutely love meeting other people with diabetes, sharing with them, helping them, and seeing that look when a parent realizes that their child with diabetes is going to grow up and be okay, or when that adult with diabetes finally finds someone else to share with who simply gets it.

14. People would be surprised to know: That even after more than 30 years with diabetes, there is still much of it that I can’t explain. For example, how can my CGM tell me that I have a “Low Predicted” and then an hour later I’m high with a BG of 170 mg/dl? Diabetes is pure nonsense sometimes.

15. The hardest thing to accept about my new reality has been: It’s not new, but I still can’t accept that there is anything that I can’t do because I have diabetes. Yes, this gets me in trouble sometimes. No, it doesn’t stop me.

16. Something I never thought I could do with my illness that I did was: I’ve never believed there was anything I couldn’t do with diabetes. Still, I like to push the envelope. Skydiving is fun.

17. The commercials about my illness: When I see a commercial about diabetes, I feel like it is targeting the vast majority of people who have Type 2 diabetes, and usually an older audience. I like Wilford Brimley and all, but that isn’t my generation, so I really wish someone would do something that appeals to those of us with Type 1 or Type 2 diabetes who are under the age of retirement.

Wilford Brimley

18. Something I really miss doing since I was diagnosed is: Life with diabetes is all I’ve ever known, but I miss what I imagine it is like not having to carry so much diabetes stuff around with me. Sometimes I feel like the trash lady from Labyrinth, especially when I travel and end up carrying enough diabetes supplies to last me for two months, even though I’m only going to be gone for two days.

Labyrinth Trash Lady

19. It was really hard to have to give up: Although I don’t think my personality is that of someone who would thrive in the military, it does sometimes aggravate me that diabetes took away the option for me to join a branch of the armed forces. Still, I appreciate that I am able to be here, alive and well, so that I can appreciate all of those who have.

20. A new hobby I have taken up since my diagnosis is: Blogging and engaging with the Diabetes Online Community (DOC) has been one of the most rewarding aspects of my life with diabetes so far.

21. If I could have one day of feeling normal again I would: I don’t feel abnormal, except when my blood sugar is too low or high. I wouldn’t be opposed to a day without having to monitor my blood sugar and every single thing that I do and eat. If I could have that, I’d probably just spend all day pigging out in the candy shop at Walt Disney World.

22. My illness has taught me: Patience, and the fact that I don’t have enough of it.

23. Want to know a secret? One thing that people say that gets under my skin is: “How sick are you?” I want to really make them feel awkward and answer that question with something akin to, “Well, at night I dream of riding horses naked in the rain, while hunting dinosaurs with rocket launchers, and then after a good hunt sitting down to a feast of buffalo pterodactyl wings and celery sticks. With ranch dressing.” I’m weird.

24. But I love it when people: Take the time to ask me questions, and clarify what they know or thought they knew about diabetes.

25. My favorite motto, scripture, quote that gets me through tough times is: “You can turn painful situations around with laughter. If you can find humor in anything, even poverty, you can survive it.” — Bill Cosby

26. When someone is diagnosed I’d like to tell them: You can do this. And you will do this. And you will be better because of it. Because you’re good enough, you’re smart enough, and doggone it, people like you.

27. Something that has surprised me about living with an illness is: That most of the time I don’t feel ill from it. Awesomesauce!

28. The nicest thing someone did for me when I wasn’t feeling well was: When you have a low blood sugar with diabetes, it tends to wreck all plans of whatever was happening prior to that moment. I am always and eternally grateful for the folks that put me first when I have a low blood sugar and need a little help. Here is one such story.

29. I’m involved with Invisible Illness Week because: If just one person reads this and learns something new about diabetes, then that is one person who is more empowered than they were three days ago when they started reading this list. (It’s a long meme!)

30. The fact that you read this list makes me feel: Grateful. Whether you have diabetes yourself, or someone you care about has it, I hope you were able to take away something worthwhile.

I think it will be interesting to look back on these answers and see how and if they change with time. Are you curious? Do it!

We Are Broken

Getting Broken Things Fixed

I can feel it. It is slithering in like a snake through murky water. It makes little ripples as it moves in, just enough to sense it if you’re looking for it, but not enough to visibly disturb the peace and calm of everyday life. It is sneaky, resting still when you’re looking for it the hardest, hiding in plain sight. When you’re back is turned, it is busy, wrapping itself around everything that is good and dragging it under the surface, dominating.

It makes things heavy, without trying to lift anything. It makes my heart pound, even when I’m calm. It makes me want to cry, but the tears just won’t come. It makes me want to scream, but the effort is too great. It makes me want to fight, when I have nothing to fight about. It makes me forget hunger. It makes sleep something that I can only appreciate because I hear others talk about it.

It is awful.

It makes things awful.

It makes me feel awful.

After all my years with diabetes, it wasn’t until very recently that I learned that depression and diabetes go together like stink and manure. A quick Google search will tell you that depression from diabetes is due to the the daily stress of diabetes management. All the pricking and poking and stabbing and pinching and squeezing and dabbing and dripping and wiping and changing and checking and fixing and… Okay, I can certainly see how someone would get to that conclusion. Diabetes management is exhausting, and maybe that is part of the depression and diabetes picture, but it isn’t all of it.

Some sources say that it is the consequences of diabetes that drives depression. Things like nerve damage, loss of sight, loss of feeling in feet and hands, and weight gain all contribute to this sense of hopelessness. Having had diabetes for 30 years, I don’t subscribe to that. The consequences of diabetes certainly are nothing to shrug off, but I know many people with diabetes today, and those that do have diabetes complications definitely do not let those complications rule their lives. These are some of the most admirable people I know, who carry on in a daily pursuit of contributing to the world and helping other people. That is their focus, so no, I don’t subscribe to the “Oh, woe is me…” reason for depression when you have diabetes.

Sources even say that depression is the reason for depression with diabetes. No, that isn’t a typo or me repeating myself. Many sites, including the ADA, say that because of depression we slack on good diabetes care practices like regular blood glucose testing, eating right, routine exercise, and sometimes even insulin dosing. While slacking off due to depression our health declines, and then we feel bad about it, unintentionally making matters worse.

Something that doesn’t get reported enough is the science that also comes into play with depression and diabetes. In Will Dubois’s book “The Born-Again Diabetic,” he points out the often overlooked malfunction in the serotonin level production of people with diabetes, which can affect mood and cause depression. Will believes that all people with diabetes should be on anti-depression medications, and I’m starting to agree with him. Diabetes is hard enough without having to deal with feeling awful about it for no apparent reason.

The problem I have with depression, besides the general feeling of “blah” that comes with it, is that there is still such a taboo about it. I have a hard time admitting it to myself when I get depressed. Even now, I’m not certain that what I’m feeling is indeed depression. It could just be that I’m worn out from all the stresses of work, life, and responsibilities. Nevertheless, once I can admit to myself that I’m having a bout with depression, I start to blame myself for it. Maybe it is because I haven’t been taking as good of care with my diabetes as I could. Maybe I haven’t been making time to exercise as much as I should. Maybe I haven’t been eating as well, letting excessive carbohydrates creep into my diet more than I should. Never in all my maybe’s do I stop to say, “Maybe what I’m dealing with is something that has nothing at all to do with anything that I’ve done.”

I have felt it all day today. I’m upset, for no reason. I’m aggravated and annoyed, when I have absolutely nothing to be aggravated and annoyed about. I’m tired, yet I can’t rest. I’m not hungry, yet I haven’t had anything more than a pot of coffee today. I don’t know what is wrong with me. I just know I’m not me.

I have an endo appointment coming up in a couple of weeks, and perhaps I will ask him about it. But I probably won’t. As unrealistic as I know it is, there is a part of me that is afraid I’ll be judged as being weak because I can’t deal with things on my own; that I shouldn’t feel the way I do, and the way I feel is nobody’s fault but my own. I don’t want another prescription to pay for either, another pill to take, and another something to have to do on a daily basis. I’m also as stubborn as a mule, and I don’t want everyone trying to fix me and telling me what I need to do. I really don’t want anyone telling me what to do right now. (I know, I’m real mature like that. [sarcasm]) That sort of mentality is probably why the ADA says that depression begets depression. Writing this post took a tremendous amount of my courage, and I just don’t know if I have enough left to face depression (if that is even what this is) head on in the clinical setting.

I’m trying my best to get through this funk. As much patience as I need from others, I also need to be patient with myself when it comes to navigating my way through it all. I’m going to stop stressing over the fact that I can’t keep a CGM sensor on my body for more than 24 hours before it falls off, no matter what kind of sticky substance I put on or over it, and keep trying to find a solution that works. I’m not going to stress out over whatever my next A1C is going to be, and just focus on getting through diabetes one day at a time. I’m going to try to not carry around the guilt of low blood sugars that sometimes happen that I need help with. I’m going to start riding my bicycle again, because there is no room for all this baggage on the road bike, and it is really hard to have a bad day after you’ve started with a good bike ride in the morning. I’m going to get things that are broken fixed, so I can stop looking at broken things (like my TV, washing machine, and my old cruiser bicycle).

I’m going to do what I do best: Focus on the positive.

And somehow through all of this, I will get the most important broken thing of all fixed…me.

Open 24 Hours

Community and Invisible Illness

As a medical librarian, I occasionally get the opportunity to teach physicians how to use medical library resources. During my last class, I had a side discussion with one of the physicians about patient communities, particularly online communities such as the DOC.

This doctor was intrigued with my diabetes blog, the DOC, Twitter and other social networking vehicles, and my experience in the library and identifying web sites where the average person finds the most information about their health or condition (read: Google) and how accurate or inaccurate those results can be. Understandably, he expressed his concern about the misinformation that people get from the internet and believe as the gospel. Being a bit old school, he prefers that patients get their information from their physicians, and not from the internet.

I can understand that perspective, but the flip side of that coin has multiple faces (and apparently isn’t very good with fractions). First, in today’s medical schools, even doctors in training get their information from the internet. And that’s a good thing. As a librarian, I can tell you that by the time a book gets in my hands to be put on the shelf, the information in it is, on average, at least one year old. With the internet, medical databases and web sites can be updated in near real-time, giving doctors, students, and even patients access to the most up-to-date information (depending on the source, of course).

Second, expecting that the only place people will get health and medical information is from their physician is not a realistic expectation. Patients get maybe 15 minutes with their doctor. The doctor practically has their hand on the doorknob to go see the next patient while they are talking to you. For someone with an illness, be it invisible or visible, that is not enough time to ask all of the questions that come to mind in living with it 24 hours a day. All questions that a person with any illness may have are important, whether they have never been asked, or whether they have been asked a million times. A patient should not have to prioritize questions they have about their disease or condition. If they have a question, they need a place to get answers, and often times that comes from a community of like people, not a physician. Doctors do not have the time to be available to answer every question that a person may have about living with their condition. There are simply too many others who need their help, expertise, and ability to write prescriptions. However, online communities (like the DOC) are available 24/7, so there are people you can turn to at 12:30am when you have a question.

Open 24 Hours - courtesy of *Sally M* on Flickr

On top of that, there is the nature of invisible illness. We, as human beans, do not like to admit or advertise that we have any type of illness, from a common cold to a debilitating disease. We go to extreme measures to keep it hidden, so as to not show weakness. A lot of times we do this subconsciously. FACT: It hasn’t been but until recently that I’ve stopped hiding my diabetes myself. There are people that have known me my entire life who to this day do not know that I’ve had diabetes longer than I’ve known them. Through this blog, the DOC, and just my ever increasing knowledge about diabetes, I feel more comfortable sharing and facilitating discussion about diabetes now than I ever have before.

It takes a tremendous amount of courage to admit out loud that we have a condition, and even more to blog about it, tweet about it, and share information about it with seemingly complete strangers (who become dear friends over time, I’m learning). What the DOC does, and what all sorts of other communities do, is help people to break the notion that having an invisible illness is a weakness. By sharing it with anyone, be it your teachers, coworkers, or the entire world, you are adding to the collective voice and helping to educate both yourself and others about your invisible illness. You are helping to break misconceptions about your condition. And you are helping yourself by finding a group of people you can lean on when you need them. Strength in numbers is especially true when it comes to living with an invisible illness.

I understand as well as anyone what it’s like to live with an invisible illness. There is no such thing as a day off from diabetes. I get depressed (which is another invisible illness), both from the demands of trying to keep up with this damn disease, the guilt and feeling of helplessness when I can’t seem to get things right, and having to carry them along with all the other burdens in life. I am thankful that most days I can say that I carry the load with strength and courage, but some days I succumb to the pressure, and it overwhelms me. But it does not beat me. I take a moment. Maybe two. I re-evaluate. I do a mental SWOT analysis. I change things if I need to. Then I bounce back. And I know that if I have questions, or need support, I’ve got a community behind me that is ready and willing to add to my strength.