Month: June 2009

Living with Type 1 diabetes is difficult. It is a 24/7/365/lifetime job that no one ever applied for, and you’re not allowed to quit no matter how much you want to. One key to avoiding burnout with the daunting task of managing Type 1 is to make connections with others on your same path. Camp Nejeda is one way to find those connections.

On the website www.campnejeda.org, they describe the camp this way:
At Camp Nejeda youth with diabetes are given the opportunity to live, if only for one or two weeks, in a world where having diabetes is the norm; where there is no need to explain blood sugar testing, finger pricks, insulin injections, ketones, “lows” (insulin reactions), boluses or ‘carb’ counting because everyone here already understands. At Camp Nejeda children with diabetes are free to be just children. This ‘normalizing’ of their condition combines with both formal and informal educational moments to promote good diabetes management and healthy, active living.

On this website www.type1demystified.org, I like to describe camp this way:
Heaven on Earth.

Sure at Camp Nejeda there are bugs, old cabins, community shower cabins, camp food, exhausting days, and everything else you may remember about camp from your younger days. But Camp Nejeda is so much more. At Camp Nejeda there are many, many people just like my son. They are all successfully living with Type 1 diabetes. Some have been living with it for only a month, yet others have had Type 1 diabetes for over 37 years. Camp Nejeda gets under your skin in the best possible way.

From the minute you drive up that long driveway into camp you know somehow you are home. Although this was only our second year at Family Camp, I know Camp Nejeda is the closest I am going to get to Heaven on Earth for my son while he is living with Type 1 diabetes.

At Camp Nejeda there are no stares when we check his blood sugar. No one bats an eye when someone gets a little feisty when their number is too high. Everywhere I turn there are blue counselor back packs that I know are full of supplies for my son if he needs any on the spot. There is no judgment. There is no explaining diabetes and the difference between Type 1 and Type 2. There is no one telling my son he should or should not eat something because of his diabetes. There is no difference between my son and all the other campers and counselors. Every one is the same, and everyone is accepted.

There is love. There is support. There is friendship. There is heart. There are connections that are made between the young and the old because of the common bond of Type 1 diabetes. Connections that can’t be found anywhere else. Camp Nejeda is the family that I never knew I had. My son, at only 6, feels the strength of Camp Nejeda. I want a cure for diabetes, and I want it now, but until then, I’ll take Camp Nejeda for my son. I am proud to be part of the Camp Nejeda family.

Winter, spring, summer or fall
All you got to do is call
James Taylor

People with Type 1 diabetes and caregivers of children with Type 1 diabetes should not have to go into debt to pay for life sustaining supplies. People should never have to chose between their health or good credit. That’s appalling.

Fortunately, let me say that again louder FORTUNATELY, my husband works for a wonderful company that allows him to be included in the corporate health insurance plan to help us pay for our son’s diabetes supplies. We do pay co-pays for our insulin, glucagon and doctor visits, but that is a drop in the bucket when you look at all the other supplies that we need to keep on hand to keep our son alive. The rest of our supplies: pump, cartridges, pump sites, meters, blood glucose strips, ketone strips, lancets and batteries, would be huge amounts of money if they we not covered under our insurance plan. We are the lucky ones.

I know many, many people with one or two children with Type 1 diabetes that do not have health insurance. They are all hard working people with at least one of the adults in the home holding down 3 different jobs. Unfortunately they are all jobs that do not provide health insurance, and barely enough money to even cover the supplies that they need to keep not one but both of their children alive. This is where the debt and the hard decision making comes in.

Diabetes supplies can be purchased with credit cards. If you know you child is down to their last bottle of test strips, you absolutely know you need more for them to stay healthy, it is very easy (or the hardest thing in the world, depending on how you look at it) to charge those strips. In the US, test strips are on average $1.00 a strip. So a family paying out of pocket for strips is paying a minimum of $10.00 a day just to test their child’s sugar to keep them alive.

You may be saying to yourself, well then test less. People with Type 1 cannot test less, especially children. You are risking acute complications such as DKA, coma or seizure if you try to cut back on testing glucose. Quite simply think of it as bandaids or tissues. You wouldn’t tell your child to bleed out if you had no more bandaids left, and you wouldn’t let your child’s nose run for days on end. You’d eventually get a bandaid or a tissue, even if they cost $1.00 each.

Let’s get back to the money. So a family with 2 children each having to test 10 times everyday is spending in essence $20.00 a day on test strips. That is over $600.00 a month for test strips alone. That is not even touching pump supplies, lancets, insulin, ketone strips, and doctor visits. There are some towns in NJ that you can rent a one bedroom studio for $600.00.

Here in lies the root of the problem, these families along with caring for children with Type 1 diabetes are still just caring for children. So other stuff has to be paid for too like school supplies, school treats, school clothes, afterschool activities, birthday parties, etc. etc. etc. No one, not even someone with a heart like the Grinch, would expect a mother to tell her child, “Sorry honey, you can’t have a birthday party, I have to pay for diabetes supplies.” Not going to happen, and if anyone really thinks a mother should do that should never become a mother themselves, they don’t have the heart for it.

I can get political with this but I won’t. Bottom line, no one should have to make a choice between a child’s health and credit card debt. We need help with this and we need it now.

Watching your child suffer through the ups and downs of Type 1 diabetes is like watching them get picked on in the corner of the school yard…and there’s nothing you can do about it.

I don’t usually complain about Type 1 diabetes, heck, it’s not my disease, it’s my son’s, but I am really hating Type 1 these last 2 days. For some reason, it could be anything, my son’s insulin needs are changing. His body is calling for more insulin. I know this because almost every number he has had in the last 36 hours has been above range.  But because the nature of this disease, I can only make one or two changes at a time, he has to suffer through these highs until we find the right balance again.

I say suffer through them because in the last 36 hours my son has complained of tiredness and a headache, has been really really grumpy and super mean to people around him. He is not normally like this, it is the high numbers that is making his little body feel awful. I can see when I do a correction to get him down, his physical appearance changes within an hour, as soon as the insulin starts bringing the number down. His face lightens, he smiles again, he is nice to his sister again, he wants to play and have fun. The insulin fixes the number and then brings him back to himself.

It will take several days for me to find the balance again. I can make the changes, but I can’t make them too quickly or drastically because then we risk the other end of the spectrum, lows which are also uncomfortable for him, never mind dangerous.

I made changes to his breakfast insulin, so school really has to be on their game tomorrow to watch for lows in the classroom and the hallways. I made changes to his night time insulin, so I have to pull a semi-allnighter to ensure he doesn’t drop too low with the changes. All of this is fine, except while all this is taking place, my son doesn’t feel right…and that’s just not fair!!!

If I could wish for anything it would be for a cure…now. And if a cure were not an option as a wish, I would wish that someone would give me his Type 1 diabetes instead. He is just a little boy. He shouldn’t have to deal with a disease that hurts him in so many ways. He is just a almost 6 year old boy…and he needs a friggin break.