Monday, September 17, 2007

Taking out frustrations

After reading over my last post I realized that maybe I shouldn't have said that certain people should kiss my butt. Besides being kind of juvenile, it also may make people feel like if they don't know anything about Type 1 diabetes then I am upset with them.

This is not the case at all. I don't expect people to know anything at all about Type 1 diabetes. I'm a nurse and I don't know things about certain diseases. In fact, until Riley was diagnosed with Type 1 diabetes the extent of my knowledge was that those with Type 1 were considered "insulin dependant". All I knew on the way to the hospital was that my son would have to take insulin. That was the extent of my knowledge. I had no idea how time-consuming this disease is. I really thought I would give him a couple of shots a day, same dose at the same time, and things would be OK. I had no idea how complex this disease really is.

But, I do expect that if you don't live with this disease to keep your opinions to yourself. Asking questions is perfectly fine. The only way to learn about this disease if you don't live with it is to ask questions. But, even then, you can't truly know what it's like.

I was talking with a couple of my co-workers the other day about the meeting at school. I was telling them that I had called the mother of one of the other kids at Riley's school who has D to see if she'd ever had similar problems with administration. She had not. This particular mom is also a nurse at another agency in town.

After I talked to her I visited a few patients and when I got back to the office I had a voicemail from a social worker at the same agency. This is someone I know pretty well. She's one of the better social workers. We share a couple of patients that don't live in the best of places so we visit them together every month.

The message went like this: " Hi, Penny. This is P. J told me what was going on with you and the school. My son has diabetes too. You stand your ground about this. Don't back down. I'll be thinking about you."

I nearly cried. I called her back and told her how nice it was. I had no idea her son had D too. At some point I said, "So, you really get it." To which she replied with a sad tone in her voice, "Yeah, I do." A lot was said with that statement.

I was telling my co-workers that even though they've seen me cry, they've seen me battle, they've seen the sleep deprivation on my face, they still don't know what it's like. They are both mothers and I told them that they have an idea of how horrible it would be. But, unless you are the mother of a child with diabetes you really don't know what it's like. I told them that what they imagine is probably only the tip of the iceberg to how it really is. I didn't say this to bring about pity. But, to point out that unless you live it, you really can't explain what it's like.

You can educate people about Type 1 diabetes. You can tell them about carb counting and giving insulin. You can tell them how to change a site and how to check a sugar.

But, this disease is so much more than carb counting and giving insulin. It is so much more than finger pricks and site changes or injections.

It is a all-consuming disease. It must be factored in to every single aspect of your life. Those who live with this disease, if they want to have decent control, have to think about it pretty much all the time. They can't eat without thinking about it. They can't drive a car without thinking about it. Those with a pump can't pick out an outfit without thinking about it. You can't sleep without thinking about it. You can't exercise without thinking about it.

Don't get me wrong. People with D don't sit around thinking about it all the time. It's just part of their life. I guess you get used to factoring it in to everything. You have to.

Still, there are the times, like yesterday, when Riley sugar went from 64 to 310 to 66 to 363. Those are the times I just want to scream. Those are the times I want to throw his pump across the room. Those are the times that I want to just give up.

I just want to be able to stop thinking for a little while. But, I can't. That is a luxury this disease will not let me have. You can't stop thinking about it, because it's not going anywhere. You can cry, you can throw things, you can curse the sugar machine as it flashes the word HI. But, you can't forget about it.

Some people try to forget about it. They go for months, sometimes years, just doing their own thing. But, they'll pay for it later. Diabetes always has the last word.

Educating people about Type 1 diabetes is a complicated process. For example, how we deal with Riley's diabetes is not how others deal with theirs or their child's. Everyone responds to carbs differently. They have different basal rates. They have different carb ratios. Some people require a lot of insulin to bring down their sugars, others only require a small amount for the exact same sugar.

An example is Charlie,
Carey's son, he is the same age as Riley and also on a pump. Whenever we do a site change on Riley he tends to go low. We try to combat this by decreasing his basal by 60% for 3.5 hours after every site change. Charlie, however, tends to run high after his site changes. His parents increase his basal by 60% after his site changes.

I guess the gist of what I'm saying is this, even us who live with diabetes on a daily basis can't tell others what they should or should not be doing. Or what they should or should not be eating. This disease is so individualized that even we as parents of kids with D can't give out too much advice.

For example, Riley can eat cake and ice cream and have near-perfect sugars. But, another parent's kid may not be so lucky. Cake and ice cream may cause their sugar to go out of control every time they eat it. It would be easy for the mother of that child to judge me and say that I shouldn't let my child eat cake and ice cream because of what it does to their child's sugar.

I always feel inadequate trying to educate others about Type 1 diabetes. For one, you have to simplify everything. Diabetes is not cut and dry. But, when you explain it to someone you can't go into details about different carb ratios at certain times of the day. Or, that when Riley is playing he requires a decrease basal on his pump.

And, the whole "Riley can eat anything anyone else can eat." , well we (the ones who have D or whose kid has it) know that 's really not true. It is, but it isn't. That is hard to explain to someone else. Riley cannot have regular soda unless his sugar is low. He cannot have cotton candy at the fair. Lasagna is a treat saved for those times when his sugar has been cooperative for a period of time. Because I know that he will run high for several hours after he eats it.

I think sometimes my frustration comes, not from people's ignorance of or questions about this disease, but from my own inadequacy of explaining it to others.

Because, I want them to know what it's like. I want them to feel what it's like, just for a moment. So maybe they'll understand when Riley's sugar is high that usually it's nothing that he or I did wrong. Or, understand the pain that comes from watching your child prick his finger like it's nothing. Or, the absolute terror of seeing a reading of 42 on a sugar machine.


But, I can't. So, you see, maybe I'm not really mad at the people who don't know any better. Maybe I'm just mad at myself, because I just can't articulate it well enough to make them understand.

Maybe I'm just frustrated because I don't even understand it myself.

3 comments:

Sherry said...

I just had to comment on your blog! I have a 17 y.o. that is type 1. Tears flowed as I read this. Having just gone through the DMV trying to take his license because his Dr. thought it would "teach him a lesson" since his levels had been up as of late! (we now have a new Dr.)Then watching him go throught the ups and downs of emotions because his freedom might be taken away. We requested a hearing and just recently went and found out that he can keep his license!! Only to now have the new counselor at his school decide he no longer needs a 504 plan and dropped him. Needless to say I am furious! Anyway, you described your/my feelings so well! Thank you for your honesty!

Penny said...

Sherry,

I'm so sorry for what you are going through. Sometimes people can be so cruel.

I'm glad you found another Dr. "Teach him a lesson". That Dr. has no idea the hard lessons your son has already learned, lessons that Dr. knows nothing about.

It just frustrates me the extra hoops our kids must jump through as if they don't have enough hurdles already. Why can't people just understand that most of the time we know what we are doing.

So, your son's sugars are up lately. While it's unfortunate, it is also unrealistic to think that his sugar will be near-normal all the time.

I'll be thinking about you as you deal with school about his 504. I know it's tiring, but you have to fight for what your son needs. And, it sucks.

Anonymous said...

Hi I am the wife of a diabetic type 1. Just to say that I can understand your frustration but don't worry about bad results. It's just a bad day and we all have them! Just have to try harder the next day. Don't let these people get you down you've got to be strong for your son. Just to say that my husband was diagnosed at 7 and lived away at a boarding school for most of his young life. He managed to look after himself with the help of the school masters, and this was when you used to have to pee on a stick to get a (completely irrelavent) result, and use huge syringes to inject the insulin (he got picked on A LOT). He is now 33 and as yet has no serious complications - he looks after himself and does lots of exercise which is great. He still has lots of hypos but doesn't go high into the realms of ketones very often ie only a few times a month. Be strong and know that there are lots of us out here dealing with and getting tired out by diabetes!! Take care.