The sickness created by D

Have you ever sat and wondered what it was like to live with Diabetes? I mean really live with it, the highs and lows. Well from the last few weeks I can most definitely tell you what the highs and lows do to your body. Imagine being on a non stop roller coaster ride, and not one of the fun ones either. You go up, stay up, then dive right back down only to go back up, and back down again. Ever since school started for at least more than half the day Clifford is running high. Now if you remember correctly his last A1c was 6.8%! He is not used to running high, especially not the high's we are seeing from school, 200, 300, 400+. One of which caused him to come home early, another of which caused him to have to sit out gym class. D is taking it's toll on his little body and there is nothing I can do about it right now, except rack my brains on exactly how to get through this. He runs high all day to come home and get back into a normal range then do it all over again the next day. It's making him feel sick to his stomach, giving him a constant headache, his eyes are burning, and he is very emotional. I just don't understand why he cannot catch a break for awhile at least. My wish and prayer for tonight is he get back into a normal, safe range, and be able to enjoy school, and not feel icky all day long. The constant up and down is beating him up, inside and out. It's basically like you or I going days on end without sleep then crashing from exhaustion. His body needs a break to rest up from this ride.

Invisible Illness

What is it like to live with an invisible illness? Diabetes is an invisible illness that makes sure to make it's presence known. From the highs all the way down to the lows. The best way to describe life with an invisible illness is a "roller coaster". The definition of roller coaster is:

An action, event, or experience marked by abrupt, extreme changes in circumstance, quality, or behavior. That in part explains some aspect of Diabetes. But in addition to the "extreme changes" you have the 24/7/365 Fear, Frustration, Anger, Sadness, The feeling of being emotionally and physically drained, and sleep deprivation . Life with an invisible illness such as D, is in one word "Demanding".

Have you ever sat back and heard about another's illness, or home situation and thought, I could never do that, I could never be that strong. Well when something such as D enters into your life, into your child's life, you have no other choice then to be strong, throwing in the towel is NOT an option. I know by this point all of this can sound scary, and the blunt truth is that it is. Diabetes is very scary, life with diabetes is scary. Because even though things may seem fine on the outside, and things are cooperating on the inside, it can change in the blink of an eye. The fear of death is far too great with Diabetes, and far too real with the loss of a precious 15 year old girl in her sleep just two days ago. What one that lives with, and one that cares for someone with an invisible illness has to decide is that fear worth being miserable for the rest of your life? To me even though the fear will always be there, it was not worth it. I may be in fear daily that something will go wrong, but I don't let that fear control me. The one thing D has brought into the picture was to learn to cherish life NOW! Cherish every moment you have and be thankful for those small miracles. I know I am thankful every morning when I hear Clifford waking up in bed! I fear the night time, I stress and worry over the night time, but there is a fine line when I tell myself enough is enough. I cannot let the fear and stress control me because I would be miserable, we would all be miserable.

Clifford is well aware what happens if he drops to low from past experience with unconsciousness and seizures. But I've tried to instill in him that D is not going to control him. We are going to do our best to control D, and keep it at bay. He is only 7 years old, he should be worrying about school, tests, sports, and dare I say girls! He should not be worrying about waking up in his bed the next morning! I make sure to put him to bed at night, give him kisses and hugs, and let him know I'll be keeping an eye on him overnight and not to worry. The sense of security it brings to him is heart warming. I couldn't protect my son from D damaging and taking over his body, but I will do my best to protect him now from it so he can live the normal healthy life.

In ending there is another word associated with Diabetes, and that is HOPE!

School.....

I have to admit the school situation with Diabetes has been giving me a headache recently. We have a temp 504 in place, temp being the school has it on file but I have yet to sign it because I do not agree with one part. The part where we're trying to get an aid for Clifford, still working on that will update as further information comes in ..

But I have to say our new school nurse is great and on the ball. I got called twice today. Once because the carb count for school lunch items was all funky and the total we thought wasn't the correct one. So she wanted to let me know the correct one. Awesome part #1. The second time being she was concerned because both of the Type 1 diabetic kids in school (Clifford and a little girl) were dropping low before lunch because of recess. So she wanted to discuss if we should try to get recess moved. Hmm this is great because if recess could be after lunch it will help with those highs we're sing at snack... So I told her just that, and she is talking to the principal about getting it moved. That is awesome part #2. I do not have to talk, and try to leave messages, get no response then keep trying over and over. She's going to advocate for this for the kids. I love it! Second week into school and I'm very pleased with our nurse, that gives me a sense of relief on that end. Up next our 504!!!!

Peace Out D!

That's it, we're putting in our 2 week notice! I've had it with D's antics. We are officially saying sayonara in 2 weeks to D!...... If only it were that simple..

We've battled the lows before, we've battled the highs. But what get's me is the 'unknown'. I tend not to dwell on it because we'll that would just drive me crazy. But now after battling lows during the night, and catching a low this morning pre-wake up time for Clifford. My brain gears are starting to turn trying to figure out what is causing this.

2 weeks ago we battled lows 4 out of 7 nights during the week. I made a decision to start giving him lower carb snacks (under 20 grams) uncovered, meaning no fast acting (bolus) insulin given to cover those carbs. I decreased his Lantus to 5 units. (Lantus is the insulin that he gets at night time which is supposed to work for up to 24 hours, or long lasting insulin.) This worked good for us except a few morning highs of 200+. Well throw school starting last week into the picture and you get ridiculously high numbers 300+ daily for lunch/snack. To me that is just unacceptable! School is stressful enough, but with numbers that high it can't be fun at all.

So point being here, his Lantus was increased by to 5.5 units (what his endo wanted) to see if we can get those early morning 200 numbers, and TA DA! We have a low of 62 at 11pm! Now as my brain is working I question is it the increased Lantus. Or is it something else. He was complaining yesterday morning of his throat hurting when he coughed, but showed no other symptoms of being sick, and the cough wasn't a bad cough more of a clear your throat kinda cough. But after getting a sore throat myself last night and having it still stick around this morning, I'm wondering if this is the start of a Fall cold brought to you by school????? Being sick would cause wacky numbers both high and low......

The problem here is there is no black or white with D. He could very well be getting sick, but it could also very well be the increased Lantus that caused the drop. Just like the tootsie roll pop.... We'll never know... The best I can do is guess and hope it all works out in the end.we'

A poem for dealing with D...

It was asked today at Sunday school how you can show your faith or worship to God in writing. I used to write poems all the time from the age of 15 on. At 15 I lost my cousin, more like my brother and it helped to write out my feelings. However with as busy life has gotten I haven't had much time to write. Tonight I sat down and tried to accomplish this task. The only thing that came to my mind in showing my faith in God is in dealing with D. It is a very difficult journey to deal with an illness that at anytime can take my son away from us. It has been a long hard road to follow in getting to the point I'm at now. So with my words here is how I show my faith to God on our D journey.

The unknown scares me to my core.

I don't know how I can take much more.

During times of many questions.

I open my heart and mind to your suggestions.

My strength I pull from you.

For you are there to lead me through.

The difficult times both near and far.

You are my ultimate northern star.

School is back in session as of Tuesday, Sept 6th, and it has done nothing but wreak havoc on Clifford's blood sugar numbers. It's just that time of year again that he made need more insulin. However the debate with myself that I'm having is that I feel he should be more active in sports or extra curricular activities first to see if that helps before we increase his insulin. All summer long when he was home and the weather was nice the first thing he did after breakfast was go outside and play, and so it continued all day long after lunch, and after dinner. His numbers reflected this, they were Great!.

But now he's back in school, and it's been doing nothing but raining all day and everyday, he's stuck inside with no recess, and only gym once a week. My thought is why just increase his insulin if he can get into activities and become more active. I know that there is a good chance in the winter time he'll need more insulin even if he is active but right now I'm leaning on activity to see if that helps. I'm just not enjoying the numbers of 300s and 400s at school when I know he has not been that high in a long time when he was at home. It's frustrating to say the least. He has been known in the past (last year) to sneak food he wasn't supposed to, so that is an option too. That is why at our 504 meeting I am recommending we have an Aide with him during the day and on the bus. #1 to help if he's low, etc. #2. They can watch over and make sure he's only eating his lunch that he packs.

Normally kids trade foods etc, and it's no big deal. Not in this case, each carb is counted and he must eat only his, because if he traded and got something with more carbs, well highs will happen for sure. I just know there is NO reason he should be this high during the day at school. When he get's home it's a fight to get him back within range, only for him to wake up then go back to school. That is one roller coaster his body should not be riding.

Stages of Grief and a Chronic Illness...

With a chronic illness it's like you are losing part of you or part of your loved one that you cannot get back. In Clifford's case I cannot get back the carefree days without D. The time that I sent him off to Preschool without any worries, or even a second thought to him eating or drinking.

When looking at a chronic illness to begin to even accept it you must go through the grief of losing that piece of someone or yourself.

The first stage is Denial, The I can't believe this stage. I kept thinking in our experience that maybe they got it wrong, maybe it wasn't Type 1 diabetes, maybe it was something else that he can just take a pill for or nothing at all. Denial is a hard stage, because with Diabetes you need to accept your new normal and handle and care for your or your loved ones Diabetes diligently.

After you have passed Denial you will hit the stage known as Depression. I may have stayed in this stage a little longer then I would have liked. I was very unhappy that Clifford had to go through what he had to go through and couldn't be a normal kid anymore. I could cry at the drop of a hat just thinking what he must endure now and the rest of his life until there is a cure. Heck I probably could still cry at the drop of the hat, but I'm emotional like that. I however got through the depression and moved onto the next stage which is Anger.

In the anger stage, which once in awhile I frequently revisit, I was so angry with Diabetes for coming into his life. I wanted it to see where the front door was and see it's way out. I wanted Diabetes to know it was NOT welcome in Our life and most importantly my son's life! It's hard to live day to day when you are so very angry at someone or something. It's not healthy for anyone around you and certainly not healthy for yourself. It is also hard not to be angry at something such as Diabetes for robbing them of a normal life. But eventually you move past your anger and learn to enter the last stage Acceptance.

During the acceptance stage you realize finally that this is how it is going to be from here on out. How I looked at it was I could either sit around being sad and angry at something that was out of our control, or I could accept it, and be as happy as I possibly could. It helps to look at all the positive around you rather than the negative when dealing with D. The best positive of all is that my son is alive!

Now some stages of grief list bargaining. Which I can see as I have said many times to God, why couldn't he just make Clifford's pancreas work correctly and give me D instead. That I would much rather endure the shots, and everything involved with D rather than Clifford go through it.

In all I've gone through all the stages of grief. That's not to say that from time to time I don't go back and revisit a few. I do, I'm only human, but I've learned to accept that this is Clifford's new life, and we just make sure to do our very best to ensure he grows up to be a happy and healthy adult. And also make sure he is a responsible capable adult in dealing with his diabetes management, that is until a cure is found...........