Tuesday, February 21, 2006

One of Those Days

I'm having one of those days again. One of those days when diabetes is all I can think about and I'm just overwhelmed. I feel like I'm drowning in test strips and insulin.

We checked Riley's sugar a record 17 times yesterday. He just kept going so low. So, I kind of overloaded him at bedtime. I am just terrified of him going too low at night, so I tend to overdo it sometimes. His sugar at bedtime was 91, not even close to an acceptable range. (usually acceptable is between 150-160) So, he got ice cream. He gets that at bed quite often because it tends to last through the night. 25 minutes later, he's a still too low 97. So, he gets a drinkable yogurt. When I finally tuck him in, he's a somewhat comfortable 136. An hour and 20 minutes later, he's a not so comfortable 358. He ran high all night and woke up with a sugar of 203. Now, he didn't get any insulin for the 358, but I'll get to that in a minute. I decreased his Lantus back to 1 unit, because all of the lows yesterday really scared me. His post breakfast sugar was 344. Later, he was 367. He had not had any insulin in over 4 hours, so he got a tiny 1/2 unit dose of NovoLog. This tiny little dose dropped his sugar down to fifty-freaking-eight. Yes, you read that right. His sugar dropped almost 300 points in an hour and a half. This has happened quite often. A 1/2 unit of Novo Log usually drops his sugar anywhere from 260-300 points. So, you see my conundrum. What do you do? Just let him run high? I can't give any less than 1/2 unit. I'm afraid if I don't give him anything, he'll shoot up in the 400s. I literally get pictures in my head of dying kidneys when his sugar gets too high. I can't help myself. Yet, because his smart little brain is still developing the lows terrify me too. There is just no winning with this disease. Absolutely no way to win. Diabetes will "one up" you all the time. It will always remind you who is boss. It usually spits in your face too, just for good measure.

I'm sick of this disease. I'm sick of insulin and carbs, and ,my goodness, the test strips are multiplying. I find them EVERYWHERE . They are in the carpet. They are in the car. They are in the yard. I've literally woken up in the morning with a test strip tucked safely in my hair. My husband found one in front of the drink machine at his school the other day. There is only one person who works there who has D, and they use a different machine, so it was determined that the test strip followed him to work.

I broke down at work today. I hate that . I hate to cry in front of anyone, including my husband, but when my mom called me at work today to tell me that Riley's sugar was 367, I just lost it. Of course my co-workers were looking at me like I had lost my mind. I don't blame them. They don't understand. They don't really get how hard all of this is. They couldn't know unless they lived it and I don't wish that on anyone. As I was crying, "I can't do this anymore!' just kept going around and around in my brain. But, then I snapped out of it. I have to do this. I have to be there for Riley. I can't give up. I can't slack off.

I know my break down had to do with a lot of factors. For one thing, I am very sleep deprived. You other parents out there know what I'm talking about. Things had gotten better, but now that Riley's numbers have gone haywire in the middle of the night again, sleep is a thing of the past. If I do get to sleep, it's not long before the alarm clock goes off and I'm up and lancing a tiny finger again. Michael does help with this, but I always wake up too and wait to hear those 2 little beeps and then ask, "What is it?" Also, the whole pump thing is stressing me out a bit. Don't get me wrong, I can't wait to start. But, I'm also nervous about how things are going to be.

I'm sorry to dump all this negativity out, but I guess it's better than keeping it in. Thank you all of my invisible internet friends for listening. (reading, whatever) Even though I can't see you, it's comforting to know that you're there and that you get it. I know that you've been there and you've made it through and ,somehow, I will too.

12 comments:

Shannon said...

We get it, we really really do. Use your blog to dump the negativity. Don't apologize.

You're facing a big change by using the pump, but I promise you that the day you just had will be few and far between once you start the pump.

Cry, bitch about your challenges, whatever you need to do. It's always good to purge negative emotions to make room for the good ones.

Lori said...

I second Shannon's comments. Sometimes we just need to vent and that's a good thing. It's tough being a mom with a diabetic child. Mine is 15 (diagnosed at 13) and it's scary for me because he wants to make all his own decisions. He's been on the pump for a year and we love it. Teens are hard to regulate because of all their hormones, but we got our A1C back yesterday and it was 6.5! Yea! I love your blog! hang in there!

julia said...

For whatever it's worth, here's my suggestions:

Make a schedule with your husband. Do every other night. On the nights you don't do the checks, take a sleeping pill - even a Tylenol PM will help. This will let you sleep thru the tests and get some much-needed rest.

My other suggestion is counselling. It really helps to have a disinterested party to dump on, someone who's job it is to listen to your woes and struggles and then give constructie advice. Not that us internet weirdo friends aren't good (we're fanTAStic), but sometimes an impartial ear really helps.

I got totally burned out a few years ago. It sucked and I was a mess, crying at the drop of a hat and so stressed out that I was making everyone miserable. I totally know where you're at right now. It's not a fun place to be.

Cathleen Darlene said...

I'll keep praying for you. Riley has a great mom and dad, and I'm thankful for that.
Hugs,
Aunt Cathy

Jamie said...

We are going through the exact same thing. I am having to eyeball 1/4 units of novo-rapid just to avoid those highs - cause 1/2 unit is just too much sometimes.

Our last visit to our endo last week made us feel a bit better - but ya, it's a daily struggle - what works for us one day, does NOT work for us the next - which makes things even more difficult.

It'll be nice when the pump is up and running - I'm sure you won't see days like that much afterwards. No need to apologize for venting - I do it a lot too - and it seems the only place I CAN do it is on my blog.

Big hugs.

Scott K. Johnson said...

Ditto what everyone else has said. It is a hard job.

One nice thing about the pump is that you can deliver in much more precise and smaller increments. That should help the wild swings a lot.

Kelsey said...

Wow, I'm so impressed by what you diabetic parents do! When you said "lancing a little finger" I was so touched by how hard it must be to take care of such a little patient.

I'm type 1, but I was diagnosed at 13, so my parents never had to manage my care much. It's amazing what parents of young diabetics do and I'm humbled by your commitment.

Keep up the great work!

Anonymous said...

You definitely chose the right pump for your son as he needs such small amounts of insulin. Things should improve once you get used to the pump -- but give it a couple of months. I think the other blogger had a good suggestion about taking turns with the night-time testing. Everyone gets stressed out if they cannot get sleep. You are more than entitled. Keep us posted on his progress with the new Animas pump.

Penny said...

Thank you everyone for your comments. I'm doing much better now. I was just very stressed out on that particular day. Riley is hooked to the pump and using saline right now and things are going great. I will write a post about our experiences soon.

Sandra Miller said...

Maybe it's the time of year, or maybe there's something in the air...

Or maybe it's just the nature of diabetes in children, but it seems like so many of us are struggling lately with wildly fluctuating blood sugars.

Whatever the reason, we've all been to that breaking point (hell, I was smack in the middle of it last night).

Write about it, and never apologize for doing so.

Because Penny, there are many of us out here who read your words and understand all-too-intimately what you are going through-- nodding our heads, and crying right along with you.

All the while knowing that you can do this.

That Riley will be okay.

daysgoby said...

Penny -

I send you a big hug.

Ellen said...

((((((((((BIGGEST WARMEST MOST GENTLE HUGS))))))))))))))). Penny, you have to get yourself some help...Please don't see overwhelm/depression as a weakness. It too is an illness as is diabetes. Therapy for you is vital at this juncture. You may opt for some medication too. Medication doesn't have to be permanent..it can just be used to help you temporarily. I found it helped me clear the total overwhelm so I could think clearly and rationally again.

As for sleep deprivation, (((MORE HUGS))). This has been my greatest defeat over the years. I have trained myself not to sleep and it's been disastrous. I sometimes feel cursed because whenever I fall asleep, someone or something wakes me. My holistic MD doctor has tried to get me to take sleep meds. I cannot feel comfortable taking them - I have to be able to rise for an emergency. He even said re one medication "I can't guarantee you'll wake for a fire alarm with this one." OMG! Was he not joking? NO THANK YOU...didn't take that one. I can only hope you don't end up with bags under your eyes to your knees as I have :-(. I do find if I can get a nap, I grab it.


17 times in one day - ouch...but we understand your fears. Unfortunately we can't micromanage diabetes minute to minute, hour by hour. Even though we want to do so. Titrating down tinier doses on the pump will be easier, but it'll still be diabetes Penny. The pump won't be a panacea - it's important to understand that from the get go. There will still be highs and lows. The highs may even be higher because when there's a problem with the pump, there's no long acting on board. Frequent checking will help, but we can't be a manual continuous glucose monitor for our children. Thankfully those tools will be available someday in the not too distant future.

We all have to find a balance between keeping our children as healthy as possible while maintaining quality of life.

You're going to soon discover what foods raise his bg and keep it higher or at the level you need to feel comfortable. So much of what we do is through trial and error. Each person with diabetes is unique so there's absolutely no magic formula whatsoever. We were taught with lows to treat the low with fast acting sugar to raise the bg and then follow up with complex carb/fat/protein (grilled cheese sandwich?). That sustained Z. It may or may not work for Riley.

What time is his Lantus shot? Do you think it's peaking? He was 358 at night and dropped to 203 in the morning. Have you discussed splitting the Lantus dose with the endo, or giving the Lantus in the morning so you can feed the peak if you think it's peaking?

I hear you on the drop from the fast acting. I used to measure quarter units although the endo didn't believe me. I measured a hair above the line or a hair below the line. It's all so inaccurate anyway :-(.

One thing is indisputable, you are a wonderful, caring and loving mother who is trying her best with a difficult situation. Again, you need help sweetie. This is not something you can manage on your own right now. If you can get yourself more clear headed and less overwhelmed by the pump start, you'll be able to relax enough to take some of it in stride because the pump start will add a new dimension of pressure.