The Diabetic Partner Follies, Act 16 — WANTED: Strength and Acceptance

A heartfelt welcome once again to the Diabetic Partner Follies, a sharing place for partners of people  with diabetes (PWDs). This week, we hear from Cheryl in Washington state, who’s had a long and happy marriage with her Type 1 husband. But the disease has certainly been frustrating, calling upon both partners to muster up almost more strength and acceptance than they thought possible. As I read this, I knew just what Cheryl meant. I guess you probably will, too.

My husband and I just celebrated 10 happy years together. Seven years ago at age 33, this tall, thin, very healthy (never got sick, actually), plane piloting, water skiing, drag racing wonderful adventuresome guy came down with a very fragile case of Type 1. Our kids had fought off a very nasty case of stomach flu a month earlier when my husband started feeling thirsty and weak and had blurry vision. We took him to the doctor to discover his blood sugar was 495. A few days in the hospital and the doctors couldn’€™t agree whether it was type 1 or type 2 — pills don’t control it, so he’s on insulin and we together try and learn all we can so he can deal with the disbelief, anger and frustration at his having his whole life turned upside down. They thought perhaps that his immune system was triggered by that flu and destroyed his pancreas cells.

At the same time, I was launching my home-based business after a few years working in failed dot-coms.Cheryl_a Almost right away, my husband started having horrible symptoms that none of our then doctors could (or would) help us understand. He was nauseated to the point of being bed-ridden for an entire year. NO answers. He would sometimes turn completely cold and have to take a super-hot bath. He would have scary heart palpitations. A few years ago, for a period of at least a year, he would wake up in the middle of the night (normal blood sugar) and literally shake as if it were 30 below. One doctor we went to listened to all of these symptoms and I kid you not, said “What do you want me to tell you?” Needless to say, we’re still very angry and frustrated with the medical system. His last endo wasn’t much help, either. He once said, “I only do blood sugars…” Argh! Once early on, my husband had a bad low BG attack while driving. It scared him so badly that it was many months before he felt confident to drive anywhere alone. Now, we have the joy of hoping he isn’t pulled over and tasered, should he have a low BG attack.

In recent years, he’s been better able to keep his sugars under control but it’s still a constant battle. Winter months were worse than summer, so I encouraged him to start going to a tanning salon and that has actually helped keep his spirits up. As many folks have mentioned, not many friends and family understand the restrictions this disease puts on you. Spontaneity is a thing of the past — do we have enough strips, do we have enough insulin, get the icepack for the insulin, where are the needles, do you need a new lancet? No, I can’t eat yet — dinner’s at 5? “Do you want to see the dessert menu?” LOL

We keep a can of sugary Sprite in the car just in case, and he takes a bag of 2-bite brownies everywhere as he knows precisely how much one will raise his sugar.

My husband doesn’t “work,” per se — although a fantastic graphic/flash designer and 3D modeler, he manages the kids and most of the housework and cooking while I slog away at my computer for clients 12 hours a day. That’s plenty of work in my book, but family and friends see it differently. I often get “the look” or lectures from family — but they have no idea what it’s like to live with, love and support a Type 1 fragile diabetic — who has to live each day knowing he may not have as long as everyone else, who has a monkey on his back 24 hours of every day that’s trying to kill him; who can’t live the life of adventure and daring he once did that was such a huge part of his personality. Not to offend anyone, but if he had cancer or some more visible condition, I think (other people) would be more understanding.

And I’m by no means perfect. I get downright angry and depressed sometimes. It takes a lot of strength and acceptance when sometimes you just wish you could quit and not bear all of the responsibilities — but I love him, he’s my knight in shining armor, still. He fights harder than he lets on, he pushes himself for me and the kids and I couldn’t ask for a sweeter, more charming and loving man.

(Thanks for letting me share, Amy. I really am so happy I found your wonderful blog and could share everyone else’s experiences. It has really helped me get through some rough times and has answered my plea — I had been looking for this place!)

Regards,

– Cheryl A in Washington


Thank YOU, Cheryl. Once again, these “Follies” have made me see my own knight in shining armor in a whole different light…

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8 Responses

  1. Ed
    Ed August 10, 2007 at 7:21 am | | Reply

    Cheryl, The lead doctor for the Artificial Pancrease Project is out of the University of Washington – your husband may want to reach out to that center – it sounds like you 2 still don’t have a good understanding of why all this has happened. Also, the Naomi Berrie Center in Manhattan, NY is amazing and is on the cutting edge of research – they may be able to help your husband manage some of his complications as well.

  2. riva
    riva August 10, 2007 at 7:29 am | | Reply

    Here’s another endo in Washington State you should check in with. I don’t know if Ed is referring to this doctor because he too is at the University of Washington. His name is Dr. Irl Hirsch. Google him and you’ll find plenty of info.

  3. Jenny
    Jenny August 10, 2007 at 7:30 am | | Reply

    It sounds like Cheryl’s husband ought to be evaluated for an adrenal hormone problem. The symptoms described go WAY beyond diabetes, but are found in people with Cushings–which can cause diabetes, too.

  4. mollyjade
    mollyjade August 10, 2007 at 8:06 am | | Reply

    I’m sorry you’re having such a hard time with this. “What can I do” is not an acceptable answer. I agree with the others. It’s time to find a new doctor who is willing to work with you to find answers.

  5. Dan Fahey
    Dan Fahey August 10, 2007 at 8:35 am | | Reply

    Two thoughts:
    1) Your husband’s “cold” spells are unlikely to be related to his diabetes; it could be thyroid related.
    2) I’m a Type 1 diabetic of 40 years, and I’ve never lived my life as a diabetic, but rather as a person who happens to have diabetes. Complicated life, sure. A real and full life, absolutely.
    I’d get someone to focus on causes other than diabetes for your husband’s body-temperature control problem. It’s a real problem but manageable once the appropraite regimen is applied. [I have 2 friends that have this exaxct problem: neither is a diabetic]

  6. Scott K. Johnson
    Scott K. Johnson August 10, 2007 at 9:14 am | | Reply

    Thanks Amy!

    Great post Cheryl, thank you for sharing with us.

  7. Sarah
    Sarah August 13, 2007 at 5:33 am | | Reply

    Your husband needs his thyroid and adrenal levels checked. Autoimmune attacks against either (if he has Type 1, which I assume he does) could cause these symptoms. Surprisingly, Celiac Disease can present atypically as well.

    I have autoimmune (Type 1) diabetes and all of the above autoimmune disorders. It certainly makes for a life of living hell. I wish I had more answers for you, but the truth is, doctors have been fairly useless in my case.

    Please look into a *good* Endo and/or GP, if you can afford to, I would try the Mayo clinic.

  8. Marie Castro
    Marie Castro August 27, 2007 at 1:08 pm | | Reply

    An associate recently recommeded that I check out Diabetes Mine and I am so glad she did. This is a great Blog and I applaud you for your efforts. Thank you.

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