On being diabetic

Let’s set something straight.

I am diabetic.

I have been for nearly half my life (14 years to be precise).

Which means I have some experience with this disease and how to care for it.

I even happened to diagnose myself.

(Sometimes it pays off to be intensely self-aware).

I also happen to have a PhD in genetics.

Which means I am not stupid.

*****

I am fully aware that I am not perfect.

I could take better care of myself.  I don’t check my blood sugars 12 times a day. I exercise probably 3-5 times a week, but not on a regular basis. I have the same philosophy towards eating – such that I eat everyday but not necessarily on a perfect routine. I eat without checking my blood sugar and sometimes I even eat and forget to give myself insulin.  So I know there is room to improve. Yet other than high blood pressure (which I am pretty sure I got from my mother’s side of my family) and being near-sighted (thanks Dad, for that) I am in pretty good health.

Now, I have taken great strides to improve my diabetes management.  I have established general, diabetic, womanly and even eye doctors. I’ve been to the doctor’s office 8 times in the past 3 months.

I’ve talked to insurance companies and mail-order pharmacies.  I’ve spent who knows how much money to help care for this disease. I am puzzled by my insurance company who will pay well over a $1000 for a 3-month supply of insulin (while I only pay $15) but will hardly pay $300 for test strips for my blood sugar meter – leaving me to pay $100. I would argue (and I am pretty sure my many doctors would as well) that knowing my blood sugar is absolutely fundamental in being able to control it. So why don’t the insurance companies get it (or at least pay for it better)?

I am mostly willing to do all this. Except for when the MDs waste my time, talk down to me and then want me to share my personal history with them.

All I want is the prescription that they need to sign for because they went to medical school whereas I went to graduate school.

*****

I know that they are just trying to help.

I know I should be grateful that this disease can be managed and doesn’t have to be life-threatening.

It hasn’t interfered with my ability to work, to dance, to scuba dive, ride my bicycle or even my social life (Scott affectionately calls me “his cyborg girlfriend”). Hell, I can even eat chocolate cake (with the aid of my insulin pump).

But there are days when I wish I didn’t have it.

I get tired of the constant blood sugar checking and finger pricks.  Of having to change my insulin and its tubing from the pump. Of going to the doctor every couple of weeks. Of having to count every gram of carbohydrate I consume. Of making sure that I brought all the necessary supplies with me when I go out of town, even if only for the weekend. Of constantly assessing how I feel.  Am I hungry? Shaky? Having trouble focusing? Maybe I have low blood sugar … Am I tired? Lethargic? Is my mouth dry? Am I constantly going to the bathroom? Maybe I have high blood sugar …

The entire thing is exhausting. It’s like having a shadow hover over you that will never allow you to fully be in the sunshine and carefree. So my control slips. And then I get lectured from my doctors who think I don’t know better.

But I do.

Then the guilt comes.

But I continue to feel chained to this disease.

And will be … for life.

*****

Okay, the rant is over. Back to happy posts after this.

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2 responses to “On being diabetic

  1. It’s interesting that you describe your experience with your disease in that way. I can remember when I learned that you had it back when it was happening-and it was because of you Dad was diagnosed~a fun family party game “Test your blood sugar!” I was going through the phase of idolizing others and just as I wished I could have braces like my brother, I actually secretly wanted diabetes just like you!! Perhaps it was the attention but after careful self questioning at a young age I discovered I just had some kind of fascination with the idea of having to take care of myself in a way that required little medical gadgets and orderly record keeping. (A strange inheritance from my mother I’m sure). The phase quickly passed but I can reflect on it now. Just as I had braces…and headgear…and hated it very much. I now know what it’s like to live with something life-long and is burdensome but that is as important as your life.
    I completely understand-having gone through a lot in the last year discovering a diagnosis for mine (primarily Chronic Lyme Disease, Polycystic Ovary Syndrome, and the multitude of symptoms, pain, and secondary infections from just being immunocompromised. Many of which was happening for 6 years uncontrolled. The hardest part has been the depression and general mindset that I got myself into and not quite knowing if I really am making any sense on the outside. It’s been difficult to communicate and maintain work and personal relationships. The cost has been excruciating and thankfully insurance has supported a bulk of testing and visits. The Lyme, however, due to political controversy is not. Nor the vitamins and supplements that gave me back my life. I certainly have shared your frustration with the medical community-even as an employee for a few years!! I worked with an endocrinologist who discriminated against diabetics. I don’t surround myself with that kind of environment anymore.

    The diet I must adhere by is tremendously difficult. It’s either that or be debilitated as a consequence. My lifestyle has been mistaken for an eating “disorder” by outsiders (and having overcome anorexia as a teenager, I know first hand what that’s like). I have developed allergies and sensitivities and possible chronic candida overgrowth. Luckily in recent months I have found the right treatment combination to alleviate most pain and discomfort in general (amazing from being at rock bottom and not able to even get out of bed for weeks on end). With hormonal imbalances too I was all over the board and was pretty withdrawn from all social interactions and painstakingly avoided them despite the guilt I had and partial desire to participate. This is the first public posting I’ve had in a long time-mostly because I had grown tired of people only thinking about my illness when they thought of me. It was hard to separate myself from the disease(s) when they did follow me everywhere (like a shadow) and I couldn’t find myself again with the new-found knowledge that my life was more fragile that it once was. I am glad I finally got through the first few stages of the process. I can remember longing for that day when I could say it was in the past. (Denial was hard especially in the first few thoughts of the morning), feeling sorry for myself and making excuses-exasperating the symptoms, and finally I arrived at acceptance and being proactive instead of spirally downward in self pity or even worse-standing still with numbness.
    I have learned it is good to have imagination, independence, and humor especially when it gets mundane. And also that it’s alright to admit that I’m scared or unsure.
    I created a “drinking game” with my supplements~I take on average 45 pills/day). It’s also a good way to get water down I suppose. I also have ways of mentally coping with pain on days its unavoidable. The stress and anxiety (my biggest enemy) are hard to work with sometimes but as long as I am doing everything I possibly can to keep myself on schedule, I can handle challenges with a good attitude, and it also keeps my energy level up.
    I hope you continue to care for yourself and get the most out of life, like I know you will. When you find yourself growing frustrated, if it helps, remember, you are not alone!! And that your family loves you!!

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