Friday, February 9, 2007

Slacker Heaven with the CGM and a Word About Diabetes/Life Balance

Have I mentioned lately that I really love this CGM? I just downloaded the software, which I was obviously very hesitant to do, because I didn’t want all that information. I get diabetes overload. I am approaching 25 years with the disease and I just get plain sick of thinking about it, which is the perfect time to have a CGM. You blow everything off, but an alarm sounds if you creep high, or you slide below 60. This is a freaking miracle! I can blow off diabetes and still know that I am doing well with an occasional glance at the receiver. A-O.K. This is huge for the mental health of the lot of us!

So, it is time to address one of the main reasons I started this blog; I have chosen a life at peace with diabetes, a life with balance. My philosophy on the subject is not particularly common; there is more than enough doom and gloom out there. I don't go there.

Since I was 14 I have had a good relationship with diabetes. I have my moments, but overall I have been very thankful that of all the illnesses out there, I was afflicted with one that forces me to eat healthy and do the things that EVEYONE should do to live long and healthy lives. As I have grown older, I became conscious of the importance diabetes played in my daily life, but it didn’t run my life. Well, actually diabetes had a lot more control of my life until I got an insulin pump (more on my very strong opinions about the pump later).

I rarely went to support groups, because the one or two I attended were filled with a lot of complaining, worry, suffering and misery. I didn’t need that. They were also filled with people who had been living with diabetes for 30 + years and they were experiencing complications I really didn’t want to hear about as a teenager.

In college, I was fed up with having no one around me who understood my daily issues, so I started a support group for 18 – 35 year olds in Austin, Texas; the majority of us were in our twenties. We talked about how we handled going to parties, making sure our friends kept an eye on us. We also discussed dealing with low blood sugars when no one has your back; your room mate is a total slacker or never around and you are left stumbling to the fridge for OJ hoping you don’t pass out on the way.

As the mother of a child with diabetes, I have constantly had to adjust my expectations of our life and of myself. I have lived my life before baby with a “good is good enough” mentality around my own diabetes, but this is my child we're talking about. She is small, sweet and innocent; how can this be happening to us? But trial and error have helped me find that there is no one in the world who can care for my child better than me. No endocrinologist, no nurse--even her diabetes educator can’t be more in tuned with her than I am. I worked to understand what our challenges are and I can see that diabetes isn’t the end of her life; it is part of who she is and part of who we are as a family.

My daughter is six and a half. She wears a Medtronic Minimed Pump; she has since the first month of diagnosis and she knows how to use it. She loves to count her carbs and show off her math skills; she independently takes her insulin after she finishes a meal and has checked with me to confirm her math. She loves to “guess how many carbs” are in things and takes a good deal of pride in not needing help. This skill and comfort with her role in managing diabetes has made trips to day camp, play dates with friends and sleep overs much easier, but that challenge was never hers, it was mine.

In future posts I’ll write about how a life with diabetes can be a life of balance. I'll also fill you in on my new Navigator Co-Pilot software.


Photo by Leslie LeCornu © 2006

7 comments:

Chrissie in Belgium said...

I love your blog b/c it is POSITIVE. I have a blog too at http://chrissieinbelgium.blogspot.com . However I am one of those Ds who perhaps you consider "old". Having had D for 45 years. D has NOT made me negative! Sure, sometimes I need to scream, but it has made me LOVE life b/c I appreciate it. I also really like hearing about your CGM! I am SO intrigued! I wake up twice every night to check my bg values. I do this b/c I want to feel good. I LIKE feeling good. This is my choice and for that reason it is easy to accept!

DotConnector said...

Hi Chrissie,

I never said "OLD," I was 14 or 15 at the time. Now I am approaching the diabetes 24 year anniversary.

We have a choice about how we live with this and I love your attitude!

Very curious about diabetes care options in Europe. Did you say you have a pump; if so which one.

Best,

Wendy

Chrissie in Belgium said...

I have a Cozmo pump. There are big differences in the quality of care depending on which European country you are in. Good diabetes care is availabe in Europe, but a larger effort is required to find it since it is less prevalent. Belgium is a small country and EVERYTHING is split along the language divide (French versus Flemish) - that doesn't help matters. In Sweden good care is centralized to the larger metropolitan areas with universities - Stockholm, Göteborg and Lund. Diabetic care is excellant at these universities.

Kevin said...

Hi Wendy,

Wanted to drop you a note about how much I enjoy your blog. Thanks for sharing all your insights and experiences with your Navigator.

And I think you've hit the nail on the head about no one being able to care for a diabetic child better than a diabetic parent. Almost makes me wish my parents were diabetic! (Not really).

Wendy L. Morgan said...

I guess I am lucky with this curse; having diabetes myself has given me a huge advantage in caring for my child. However, my point when I said "But trial and error have helped me find that there is no one in the world who can care for my child better than me," is about the gift of being a parent (not about my 24 years of expertise with T1). As parents we are inherently equipped to provide the best care for our children using the knowledge and insight we have and continue to learn.

We have to look at limiting role perfectionism plays while managing this disease. There is no "perfect" living with something as fickle and variable as diabetes, so “good” has to be "good enough." Why fight a battle with yourself that can't really be won. We do our very best and we deserve the peace of mind that that is enough.

julia said...

Me again, the demon commenter.

I used to belong to the parents email list on the CWD website. I stopped getting it because it was a litany of crises, woes and general pissed-offed-ness. It made me depressed.

I've found the OC to be a much more upbeat place in general. You can whinge and wail and people will be there to support you, but they will also be there to give you a kick in the butt if you need it. There's not a lot of sitting around, feeling sorry for yourself in the OC. I don't want my daughter to feel sorry for herself; I want her to be strong, to ask for help when she needs it and to give help when it's needed in return. I don't want her to live a woe-is-me life, you know?

Anonymous said...

I consider this the "duality of diabetes" - it's a life threatening, uncurable disease that is bound to impair the lives of many people it touches.

It's also a disease that, with diligence, can be completely under my control.

Obviously, good CGMS systems will help a lot!

Thx,
Scott