Tell It to Oprah

Manny (founder of Tudiabetes) sent out an email this weekend asking people to flood Oprah Winfrey's producers with emails telling them how important it is to get the word out about diabetes. Go here to read his plea.

I went today and told my story. I said a little about Type 1 and what Riley must do every day. I mentioned complications and gave a few sites for them to look at to find out more. I also mentioned Dr. Denise Faustman and her valiant effort to find a cure for Type 1 diabetes.

Won't you go and do the same? Tell your story. It will only take a minute or two of your time and the impact could be more than you know.

Thanks.

Diabetes Burnout: What Do You Do?

Everybody gets burned out sometimes. Sometimes you get burned out at your job. So, you take a vacation. If the burnout is really bad than you find another job.

Sometimes you can get burned out with a hobby of yours. You may take a few days, weeks, or months off to return to it refreshed. Or you just take up a new hobby.

But, what do you do when the one thing that makes you cry and scream, the one thing that you don't want to see, hear, or feel anymore, is the one thing that you just CANNOT walk away from?

That's where I am right now. I am sick of finger sticks. I'm sick of figuring out how to adjust basals. I'm sick of site changes. I'm sick of treating lows and worrying about highs.

Yet I can't back away from it. I can't just take some time off. I know, I know it's not my disease. I'm usually the first to point out that this is Riley's disease, not mine. He feels the highs and the lows. For now it's my job to figure out what to do about them.

Even when he's somewhere else, at school, at my mom's, or even with Michael, I get a call. "Riley's sugar is 52. I gave him juice. Do you want him to have a snack too?" Or "Riley's sugar is 440. It was 330 before and I gave him insulin, but it won't come down. Do you think you need to change his needle?" Or "How many carbs is in.....?"

Your advice may be that I need to give the reigns over to someone else for a while. But, I can't.

You PWD out there reading this think about what that means. You are the one who knows your body. You are the one that deals with the highs and the lows on a 24/7 basis. You are the one that knows how your sugars respond to exercise or stress.

Well, I'm that person for Riley. I've been making all the decisions about his diabetes for the last 2 1/2 years. I may not feel the lows and the highs but I'm the "expert" (if there is such a thing) at how to deal with them. I make the decision to give 1/2 of the usual amount of insulin the night after a soccer game. I'm the one who makes the decision about how much to decrease his basal and for how long when his sugar is 82 at bedtime and he still has insulin on board.

Would you just turn the reigns over to someone else? Would you let someone else treat your lows and bolus for your highs? We all know that diabetes is an individual disease. What works for one will not always work for another. In some people excitement or stress raises their blood sugar. With Riley, it makes him go low.

I'm not complaining really. I know that's what it sounds like. It's not that I don't have anyone else to give the reigns to. I just don't want to give the reigns to anyone else. I don't want people to stop calling me and asking me what to do. Because as long as I'm making the decisions I'm doing something to help Riley.

That's really what it's all about. I want to make life better for Riley, easier. I don't want him to be high or low too often because I know it affects his body and it affects his moods.

I want him to run at soccer games until he can't run anymore. I know I'll be dealing with a low later if I don't decrease his basal and give him less of a bolus. But, what matters at the moment is that he's having fun. I don't want diabetes slowing him down or making him second guess himself.

I'm just tired, that's all. I want it all to go away, but I know it isn't going anywhere anytime soon, if at all.

Prayer helps. "I can do all things through Christ you strengthens me". But, what about the anger that is bubbling up inside me? Anger at a disease that I cannot control no matter how hard I try.

I guess it's kind of like doing laundry. That is my least favorite chore because it's never-ending. I may work all day to get the hamper empty only to have it fill up at night with 4 sets (sometimes more) of clothes and towels. I feel a sense of accomplishment when the hamper is empty. Then when it fills right back up again there's a feeling of "why bother?". It's just going to fill up again anyway.

With diabetes the hamper is always full. There's always something that needs to be done.

How do you guys deal with it? What do you do when you're burned out with a disease that is relentless, a disease that you want to ignore but you can't because ignoring it only makes it worse?

What do you do?

Psst. Pass It On; Free Strips

I found this over at D-Log Cabin.

Do you use a Freestyle Lite meter? If so you can take a survey to receive 100 free strips. How cool is that?

$100 worth of strips is well worth taking a 5 minute survey.

Shout Out

I just wanted to give a little shout out to one of the best diabetes sites there is. I've blogged about it before, but I haven't mentioned it lately. It's been growing by leaps and bounds.

Tudiabetes is a social networking site for those affected by diabetes in any way. The founder is Manny Hernandez. He is a great guy that started a great site. If you get a chance after checking out the site go let him know how much you appreciate what he is doing.

The site has many features. You can post questions or opinions in the forums. Or you can just go there if you need to vent. You'll be sure to get a online hug or two. Because the people there get it. They live it. They understand. It is a wonderful community to be a part of.

There are several groups that you can join. I created a group for parents of kids with type 1 if any of you would like to join. Tudiabetes also joined up with Diabetes Talk Fest so you can chat with others with D as well.

Tudiabetes has a wealth of information for people of all ages whether you are Type 1, Type 2, or somewhere in between or even if you are a family member of someone with diabetes there is a place for you there.

Click here to learn more about tudiabetes and how to become a member (it's free!). If you join be sure to add me as a friend.

I hope to see you there.

Better Late Than Never

I'm a bad diabetes blogger. I missed Raise Your Voice Day. Riley had a school play that day and I just forgot. My bad.


So, I'll raise my voice today as I have countless other times because of Type 1 diabetes.


Lately I've kind of been in a diabetes lull. It's not because Riley's sugars have been good. It's quite the opposite. They've been horrible. He's had a sinus infection and his sugars have been high, higher, and highest lately. But, it hasn't affected me like it used to. I think I've gotten tired of feeling, tired of worrying, only to have to do it over and over again.


And, that scares me. I used to be terribly concerned to the point my eyes would tear up and my stomach would churn. But, lately, I correct and I go on.

Some of you might be thinking that it's good that I'm not letting it affect me. But, it's bad. Very, very bad.

I need to find a middle ground. I need to learn not to let it bother me so much, but it needs to bother me some.

Why?

Because people die from Type 1 diabetes every single day.

Because pretty much everything about my child is affected by this disease. It affects his organs, it affects his moods, it affects his sleep, it affects his play, it affects his eating.

Because if it doesn't bother me why would it bother the general public?

There are 30,000 cases of Type 1 diabetes diagnosed every year in the United States. That's just the US. It doesn't take into account the other thousands that are diagnosed in other countries.

Why should we raise our voices to bring awareness about Type 1 diabetes? This study is a very good reason why.

Some highlights from the study:

• According to a recent nationwide survey released today, nearly 80 percent of the American public does not know the difference between type 1 and type 2 diabetes.
  
  In the survey, nearly 70 percent of people incorrectly believed a cure existed for type 1 diabetes. The majority of respondents mentioned proper diet (25%), weight loss (18%), exercise (22%), insulin (16%) or other medication (12%) – as ways patients could cure their type 1 diabetes.

If 70% of people believe a cure already exists then why in the world would they donate money or time to find one?

It is up to us to make them care. And, to do that, we must first care ourselves.

We must first admit how horrible and insidious this disease is. If we treat it as "no big deal" so will everyone else.

It is a big deal. And it should be treated as such.

Don't have a child with diabetes? Read the study that says that "Type 1 Diabetes May Be Rising in Kids". The chances of your child developing Type 1 diabetes are higher now than ever.

After writing this post maybe I've found my middle ground. I don't need to tear up and get all mushy inside when Riley runs high for a while. What I need to do is react to the situation and take steps to make sure the situation doesn't happen again.

One way I can do that is to raise my one small voice and yell as loudly as I can that my son and all the others with Type 1 diabetes need a cure. I will not stop shouting until a cure is found. No matter how raw my throat is or how hoarse I get I will continue to shout.

My son deserves a cure. The millions of people affected by Type 1 diabetes deserve a cure. I refuse to shut up until one is found.

Penny Needs....A Meme

(quick update: I think my stone is gone!! I am no longer in pain!! Yay!!!)

I found this meme and thought I'd give it a try. If you would like to participate go to google and type in your name and needs. Then post the first 10 results with your responses.

Penny needs to switch meds.

Maybe Penny just needs to be on meds in the first place, psyche meds.


Penny Needs a Bra... Bad.

Geez, google is getting a bit personal isn't it? I would like a new bra though. Good bras are expensive. I need one to keep the merchandise where it should be and not at my belly button . (Hee, hee. That reminds me of one of my favorite jokes. An older lady is suicidal. She calls her doctor to find out where her heart is located. He tells her it is located under her left breast. The lady was later admitted to the hospital with a gunshot wound to her left knee.)

Penny needs a new family.

OK, that's a low blow. I love my family. Except Uncle Merle can get a little creepy sometimes.

Penny needs the guys to help her get her bar tending license.

Forget being a school nurse, bar tending is the way to go. I think I'd have a tough time with it since I don't drink alcohol. I'd probably get offended if someone asked me for Sex on the Beach.

Penny needs a home.

Amen to that. I'd love a new house. I did buy paint today for the molding in the living room. That will have to do for now.

Penny needs to stay retired.

I just hope I live long enough to retire.

Penny needs a place to stay.

I have a place to stay. It's just not big enough. It should say "Penny needs a bigger, nicer, better place to stay."

Penny Needs Tommy John Surgery

I do need surgery, but not that kind. I've never pitched in my life.

Penny needs to have a job that will put her intelligence to use constructively.

My deconstructive intelligence in under appreciated at my current job.

Penny needs your help to be able to continue on her antibiotics and to get her serum.

I just finished up my antibiotics. Thank you very much. I wonder what kind of serum. Truth serum? Or maybe it's a serum that makes you rich and beautiful. If so I'll take a double dose please. Or a serum that would cure my son? I'd like that even more.

If any of you want to play along please leave a comment so I can read yours too.

I Feel Worser (but my mood is gooder)

Sorry about the downer post. Pain can really affect your psyche. I'm still in pain. It seems my kidney stone is quite fond of my body and doesn't want to leave. I am still working though because I had another doctor's appointment yesterday for another health issue that will eventually require surgery. So, I have to save up time for that. Which means I have to work in pain right now.

Right now it feels like someone is taking both of their fists and pushing on my lower back like they are trying to push right through me. Still I'm not feeling as gloomy as I did the other day.

In the midst of all my health problems I am looking at changing jobs. I'm a little burned out at my current job. I like it OK because I love being a public health nurse. But, an opportunity presented itself and I'm a little psyched about it.

If I get the job and take it I will be a school nurse. There are a few positions open but I really want the elementary school position.

I can really think of only one negative: the pay is a little less. It's not "we're going to have to live in a paper box" less. More like "we're going to have to all go on diets" less.

But, it has way better insurance and you all know how important that is. Riley is already on good insurance. He's on Michael's. He's a teacher so he has the same insurance I will have if I take the job. But, considering all the health problems I've been having lately it wouldn't be a bad idea for me to have good insurance too.

It also has better hours. Well, not hours but days. The hours at my current job are Monday- Friday 8 AM - 5 PM. That's not bad, especially for a nurse. But, I am also on call 10 days out of the month. I wear a beeper and if a patient calls I have to go see them. The school nurse job would be Monday-Friday from 7:45 AM-3:30 PM. There would not be any call and I'd have holidays off. Also, I cannot overlook the fact that I would have summers off.

I know some of you have mixed feelings about your school nurse. I think being the mother of a child with D will make me more empathetic with these parents. Also, I understand that the parent is the authority not the nurse or even the doctor for that matter sometimes.

Also, my current job is a state job, so if I take the school nurse position I don't lose any of the years I have put in at my current job (almost 10).

Anyway, just a lot swirling around in my head.

On the diabetes front it's pretty much the same old same old. Riley's numbers haven't been all that bad lately, but they haven't been all that good either. Yesterday he was 94 at supper. Yesterday was Michael's birthday (Happy birthday!!!) and we had peach cobbler and ice cream for dessert. Riley ate supper and dessert and got the required amount of insulin. 30 minutes later he said his sugar felt low. It was 56 and he still had pretty much all of the insulin on board from supper. I panicked a bit. I gave him juice and let him eat some more ice cream. I suspended his pump for about 30 minutes. Then at bedtime he was 365. A day in the life.

I don't want to be as somber as I was in my last post so I'll end this with what I will call a Rileyism.

Yesterday I was lying on the couch with the heating pad on my back. Riley was sitting at the end of the couch talking to Michael. He said something "made me feel badder".

"Badder is not a word, Riley", I said.

"Well, it made me feel worser then."

I just smiled. I wouldn't trade my kid for anything in the world.

Warning: Post Written While in Pain and Exhausted

I'm feeling a bit battered this morning.

I went to the doctor on Friday because of back pain and was diagnosed as having a kidney stone. I was told it is small and should pass on it's own. I went home popped a pain pills and started drinking "boat loads" of water. (That's the doctor's words, not mine.)

Saturday afternoon I was struck with a sudden pain in my abdomen. It felt very much like giving birth except maybe a little more painful because it was relentless. It lasted about 45 minutes. I'm guessing the stone was moving.

All day yesterday I hurt. I didn't sleep much at all last night. Even with pain pills on board the pain kept waking me up.

Now I'm sleepy and in pain. My emotions are a little on edge. I've read a few posts this morning and all of them have made me cry.

Somehow, because of my pain and exhaustion I am more acutely aware of how much diabetes sucks.

My pain and exhaustion will pass. But, my son will still have diabetes. And, so will Brendon, Joseph, Emma, Charlie........the list goes on and on.

It just doesn't seem fair.

Guilty

I just received an email from dlife about the latest Diabetes Dad article. I have always enjoyed his articles, but this one really hit home with me.

I hadn't taken the time to realize how much guilt we parents feel about our children's disease. There is always the "I should have known" or "I should have checked sooner" or "I didn't teach him/her well enough to do it on their own". And, for me, there is the "I wish I had better genes" guilt.

Anyway, I thought I'd share the article. Check it out if you get a chance.