Each new school year = starting over

Tonight I was reading a blog of another mom that has a child with Type 1. She mentioned that every year when school comes back around us Diabetes parents start over. All I could think was, WOW. We really do. Every new school year we start over. WE have a new set of teachers to educate. A new schedule to work around, which probably brings about alot of insulin changes. Why isn't there some magic dose of insulin anyway? Why is Diabetes the only disease in which you have to make guesstimates every single day? Why isn't it simply one unit of insulin for this or two units for this? We play this game to "manage" the disease multiple times a day for each meal based around the trending numbers of today, or the days activity. Add a new school year to all the normal adjusting we do each day and what you get is starting over. Again. I'm tired of starting over.

Maddison's school pretty much blew me off with planning the 504 revision before school starts on Monday. We aren't scheduled until next week officially. Maddison has a teacher this year that moved up from her music class last year. If she had a teacher that was unaware of the Diabetes I would not have let the 504 meeting slide. Thursday the school nurse decided to inform me that 2nd grade lunch has been moved to 12:30. This means after lunch recess they have just 45min of school left! Ridiculous! We now have to incorporate snack time after morning recess followed by PE as well. Wow. Her schedule couldn't be any worse for Diabetes. I'm pretty stressed out knowing I have alot to consider in making her day level out. Oh well, I always figure it out eventually.

Monday is the day! This being our 3rd year in school with Diabetes I feel pretty comfortable. Our nurse is great. She has been educating Maddison's teacher all week. I know her new teacher already knows Maddison well from last year so that helps tremendously. I just worry about getting her blood sugar balanced for optimal learning while avoiding the nasty lows that can take alot out of you physically. Otherwise, I know she is safe in school.

When Maddison returned to school 13 days after being diagnosed back in 2006 I nearly had an emotional breakdown. Well, I guess I did actually. At that time she didn't really know what a low felt like. I had to turn and walk out the classroom door wishing for the best, but fearing the worst. As soon as the door closed I sobbed uncontrollably all the way down the hall. I couldn't drive away. I didn't want to be too far in case she experienced her first low blood sugar reaction. I think I cried many days on end after that. To think that every day another mom out there drops off their child with Diabetes at school for the first time is very emotional for me. I don't think I could ever forget that feeling as long as I live.

So this year is different. We still have the same worries as I think we always will. This is the first year that I'm not nauseated with fear to leave her in someone else's care. I still worry what her blood sugar will do, but I know I will figure out what I need to adjust. I have confidence in our school nurse. I'm confident that Maddison will catch her highs and lows before they get serious. We hope to work on Maddison's Independence so she can perhaps manage her own insulin at snack time with supervision from the teacher to avoid so many trips to the nurse each day. I think this will be a year that Maddison gains alot of confidence. I believe she is approaching a time of willingness and readiness to take on alot more responsibility in her care. It saddens me that she will carry such a "burden" at her young age, but I also know she is proud of herself for caring for her own disease. I guess starting over is just in the name of our game.

Sleep paralysis or Severe low?

Last night I needed to correct my high blood sugar (214) before going to bed. This would be the first time attempting a new insulin sensitivity of 1:50 instead of what isn't working well anymore, I was 1:70 at night for years. I don't usually have to correct a high before bed. I am usually well in range (around 100 for me) So I set the alarm for Maddison's blood sugar check at midnight. At midnight Maddison was on the lower side of where we want her for sleeping so I set a temporary reduction on her pump for 30min and reset the alarm for an hour later.

I could hear the alarm clock blaring. I think my eyes were open, but I'm not really sure. I felt awake but I couldn't move anything. I also felt my entire body shaking, but in a panic I thought maybe Maddison was having a seizure as she slept beside me in bed. I kept trying to get up, thinking I had to get to Maddison. But I couldn't wake up. My whole body was numb, I couldn't feel anything or respond to anything my brain was telling my body to do. I was overwhelmed with something telling me to get up and drink juice, that I was low, but there was nothing I could do to get out of the semi-consciousness. I remember everything going black (falling back to sleep?) but I still felt the sense of shaking and I still thought Maddison was in trouble. That is the last thing I remember.

I woke up about two hours later and jumped out of bed in a panic because I knew Maddison hadn't been checked for too long. She was fine. I checked myself and I was now 240. Let me say, that never happens. If I give myself insulin I go down. I have never had a high that isn't brought down at least a little. But, I went up from 214 to 240 which makes me think that I had a bad low that I didn't wake up to and it caused a liver rebound. Or, was this coincidentally sleep paralysis? Either way, I am pretty freaked out. I have personally myself never had a problem with lows at night (that I am aware of!) I know some parents also say that their kids will spike highs after night terrors or nightmares. Maybe that is what happened.

When I was first diagnosed I refused to ever go to bed with active insulin from a meal bolus. I think watching my dad wake up at night to a low scared the hell out of me as a kid, even though I had no idea what that felt like at the time. So being newly diagnosed and feeling my first serious insulin low I swore to myself I would never go to bed with alot of active insulin on board. I think it took me a good two years to get over that. Finally with time came comfort and feeling secure in all my insulin dosings. One crappy night like last night can steal the feeling of security away from you. Having to correct a high blood sugar at night happens. You can't avoid it, though in the first few years I really tried exactly for this reason. I wonder if it was a dream? Was it a serious low or was it sleep paralysis? Was it really a nightmare based around my fear of Maddison having a seizure at night? Did it have anything to do with me? I don't know if I am more freaked out by the possibility I had a serious low or the thought of having "sleep paralysis" again in the future? I just wonder what really happened?

Better days

Since last week we have been getting back into sleeping schedules to prepare for school. What a difference in Maddison's overnight blood sugars. She sat perfectly in range without any craziness for three whole days! Basal tests show a really nicely tuned basal rate. The regularity and structure that school can bring is a huge plus to blood sugar predictions sometimes. I'm confident and hoping for better blood sugar days ahead!

This "stability" in the past few days helped me last night to decide I would skip the 3am check and entitle myself to a whole 5 hours straight of uninterrupted sleep. Of course when I checked Maddison at 5am she was 54,YIKES. That's a pretty scary number. I have no idea how long she actually sat around in the 50's which is even worse. This is precisely why I ALWAYS check Maddison at Midnight, 3am and 6am. I'm guessing for the rest of my life unless she starts to wake up on her own when she is low. If that's what I have to do, then so be it.

This article was run in the weekend paper about our support group here in West Phoenix cities. (Maddison is the last on the right) What we thought was an opportunity to raise awareness of Type 1 in the local paper was really a focus on the success of our support group and what a difference it has made to many more families than we ever expected. It was great to have the exposure, but I was disappointed that the article didn't focus at all on what Type 1 means for kids. At the bottom of the article online there is a spot that readers can post a comment. I thought I was just a genius for leaving a little education in the comment section. So, I hope that alot of readers have been educated by my short intro to Type 1 :)

We aren't done yet though. Our group hopes to host another car wash this year to aide in our fundraising efforts for JDRF. Last year was a pretty good success for last minute planning. We plan to include a lemonade stand with the car wash as well since everyone knows how kids love to sell Lemonade! Who can deny lemonade from a bunch of cute kids with a crappy disease? What I really hope to see this time around for our groups efforts is the chance to speak about what Type 1 means for children and adults that deal with it every single day. Stemming from our efforts ahead I want a detailed article in the local paper, and I really feel driven to see to it that this happens. Maybe not this year, but soon. I also think alot about the kids out there like Maddison that suffered a slow onset and went undiagnosed for many months, maybe years. It is comforting to know that by raising awareness some children out there could be diagnosed early on without being sent to the ER in DKA.

I have Diabetes on the brain in a much better way since the group article published this weekend. I think it has helped me to feel empowered. We have an amazing group of people in this support group. Each and every one of our kids are amazing. I have alot of new fundraising ideas, and alot of passion for gaining support and understanding for this crazy disease. Who knows, maybe we can become the next Susan G Koman for the cure. I know that our group especially together can really make a difference. I think, we already have.

School is coming.....

Stress, chaos, relief and worry. Returning to school means alot of additional stress for parents with Type 1 kids. The stress is an entire different scope than the typical parent worry. It isn't just being concerned about your child's new class lacking familiar friends. It is a concern of staying safe. Oh how I wish we could go back to life without all these complicated new concerns for a new school year.

Diabetes manifests every single aspect of our lives, and going back to school is guaranteed to bring many changes in insulin needs. For Maddison, going to bed earlier in the night means we will need to adjust basal rates since her growth hormones kick in almost immediately when she falls asleep. Hormones cause resistance to insulin, so sleeping actually brings about her highest basal rates all day for her growing little body. We have to adjust each hour by hour with a pump to time the doses just right or we will battle highs or the dreaded lows at all random times through the night.(Talk about feeling like crap when you wake up) I have to get Maddison's nightime adjusted better so she feels her best and can perform well and learn to her potential while at school. That is alot to carry on your shoulders. Summer has been so unpredictable (and carefree) that we haven't gotten many stable nights. I hear a ticking clock in my mind telling me that I am running out of time....I have got to get Maddison's insulin better adjusted to "assure" a smooth transition to school days. For now I am the "mean mom" with the much earlier bedtime rule and no eating after 6pm to better chance a good look at basal adjusting over night. Maddison is not liking this transition already and is complaining I cut her summer short by a few weeks.

All the extra work and concern us "D" parents manage this time of year can really bring back the exhaustion of "D" management. We always have to factor in so many things just to keep blood sugar well controlled, and just when you may get there, it changes all over again, especially with school vacations. I am emotionally exhausted just thinking about getting ready for school! I don't want to wonder every minute of the school day if Maddison is high or low. I am never too sure if Maddison will speak up if she is low in class when she is amongst a new group of peers. She doesn't want attention drawn to her, and she has always been "shy" around new settings. We have been working on her feeling comfortable and being able to speak up immediately in a discreet way so that she doesn't feel so "different" in having to rush off to treat a low blood sugar. I just have to trust that I have given her the proper knowledge on how to handle these times.

Worry can consume me if I don't feel confident in the way blood sugars have been trending, I am not confident. In fact, I know her daytime basal needs to be reduced, but in doing so I will then also have to increase her breakfast and lunch ratios. That can take a long time to "perfect" and during school the highs especially can cause a decrease in mental performance that will equal poor grades. What a bunch of crap Diabetes is. What happened to this just being about food like everyone thinks in the beginning? That I could handle, no problem! I'm hoping by some miracle things will even themselves out so I don't have to go with the complete change approach. I have alot of logging and analyzing to do so we can get back on track. Maddison's meter average is at 167, the highest it has been in many, many months. But with that 167 I see many, many random numbers in the high 250's to 300's. Alot of rapid drops and spikes. Not too many lows, so that is good. I can already see myself freaking out over the next A1c report in August.

There is nothing I want more to avoid than Maddison sitting in the nurse's office all day, and the kids in her class again wondering why. They begin to question her and she feels uncomfortable. I would too if I were 7! I hate that she has to miss class time to treat a high, especially a low. I expect a good month or so to get settled into a new routine. Each day is like torture for me carrying my cell phone attached to my hip those first few weeks waiting for a call from the nurse reporting a nasty low or persistent high blood sugar. This year sending Maddison back to school is a hundred times easier than last year, I'll admit that. I'm not as freaked out over all the little details though they are still there nagging at me on occasion. I believe this new school year stress will be with me until Maddison hits around grade 5 and is able to do most care in the classroom herself. Yikes, that's still a long time away.

And I worry about the normal social aspects.... Will she have familiar friends? Will she meet others well? She still insists that she doesn't have any friends, though I believe that is her perception. "Everyone likes me" she will say, "but no one wants to play with me"......that's a heart breaker that the school counselor assures me is exaggerated. We also worry about lunchtime. We pray Maddison goes into lunch at a good number to avoid eating when already high. Going higher after lunch will only make her tired and irritable, less able to concentrate and learn. It is hot outside. Our insulin in the pump can go bad in the heat. How will playing outside at lunch recess at 110 degrees make the insulin react? I hope she is drinking enough water.....

PE days are initially a worry too. Test before? Test after? What time of day does she go? Why does it seem to always be right AFTER lunch!?? Are they just sitting around because the heat or are they running laps inside? Recess......ugh. Some days you just can't get right depending on what kids decide to play for the day. Chase boys or play in the sand? What a difference a little bit of outdoor fun can do, makes me wonder if the duty teacher really DOES carry the "care pack" that holds Maddison's picture and quick sugar? Would they realize if she passed out from a low among the 200 other kids on the playground? Would they recognize her from her picture? Would they have any idea..... really?

Bus rides. Ahhhh. Maddison loves to ride the bus. It is 110 outside, I can't wait for the heat to not be a factor in my decision. Should she ride the bus home this year? or is it better to avoid that last blood sugar check before school gets out? After all, it is just another absence of time from learning. Will the bus driver notice if she goes low? Should I give her a meter and glucose tabs in her backpack even though she still doesn't interpret well what a number needs? And if the bus is late we have other worries......

Field trips....class parties......oh the things us parents can no longer just enjoy without the extra work and concern.

Finally, I called the school to request a meeting to revise our 504 plan. They assured me it was not necessary, the plan is still in effect unless otherwise dismissed by me. Ahhhh, NO. It needs to be revised every year, are they denying me a revision meeting? Yes, I think so. I put in a call (thanks Robyann!) to the district Special Education Superintendent this morning. We are scheduled with the school nurse (who I love) Maddison's new teacher, the Principal and school Psychologist for next week. One thing down, now I have to change some things for Maddison's care plan that the nurse goes by. Did you know many schools don't even have an RN to care for kids? I think I would just die if that were our case. We are lucky to have such a great school nurse, she learns Maddison's patterns well and she is always talking Maddison through the days she uses her Diabetes as an excuse to get out of class. That, is another story for another day.

Maybe this year will be a smooth transition? Maybe I will amaze myself and "let go" of all my worries early on. Are they unrealistic, or do all Type 1 parents experience these same concerns? We shall see what the year brings.....

"Unfortunately"

"Unfortunately" we cannot offer you any type of health insurance coverage.......I've heard this repeatedly for the last week. Everyone knows you will not find any insurance company willing to take the risk of any pre-existing condition such as Diabetes. We are considered "un-insurable". But being desperate I had to try. We are stuck in a really hard place. Cobra needs $2800 up front to cover us for the next two months. Um, Yea.....let me just pull that out of my savings. Ohhhh, that's right. We don't have any more savings since we used it entirely to pay off Maddison's hospital bills from diagnosis.

Going back to school means Maddison will be exposed to a bazillion germs in the nurses office every day, more so than the kids that don't have to visit the nurse every day. Her chances of ending up very ill could be pretty good thanks to Diabetes. A common cold or strep throat isn't just minor occurrence for us sometimes. I have had a hacking cough since a cold last week and I am about to cough out what I think is an ovary. A tickly, persistent, violent cough that leads to a coughing attack. Sounds great when you are on the phone trying to get insurance, LOL. I am sure they think I must smoke 5 packs a day. I literally have to ask them to hold as I hack away until tears fill my eyes and I start sweating from the stress of it all!

So, the possibility that we could be hospitalized in the next 60 days while we lack insurance I guess in reality is pretty slim being that we are pretty darn healthy otherwise. What are the chances right? But if we were, one trip to the ER or a few days Inpatient could cost us as much as a new car! Try paying off those medical bills in a time of $4 gas prices and grocery expenses that are near double! Then there is the continuous coverage issue. If we lapse the 63 days without insurance we will forever be considered a pre-existing condition. That simply cannot happen. Diabetes for Maddison and I would never again be covered. Not our insulin, ($400 per month)pump supplies ($4800 per year)no patient care that includes Diabetes. Ever, as long as we live. Now Josh calls telling me that the new insurance will have a pre-existing clause, meaning we must have continuous coverage (no gap) in order for them to insure us through Josh's new employer. COBRA or one other "high risk" plan at $700 per month is our only option. Ouch.

Can I just say how much I hate insurance companies? On one side there are the doctors and nurses, with insurance companies on the opposite. In the middle are the patients. Trapped in the gray area that overlaps these groups is the government, which is left to determine legislation meant to offer a balanced and fair appraisal of health care that benefits all parties as equally as possible. Premium costs rise, benefits are reduced. Out of pocket expenses soar. We are nearing a health insurance crisis in the US and nothing will change until it is too late for millions of people just like us. We will have to budget and change our lifestyles to afford our medical expenses. Planning for this insurance burden caused us to miss our summer vacation. Of course we will make it and find a way to pay for this unbelievable expense. As long as we are healthy and have each other, in all honesty that is all I need in my life. I have never been one to need alot of little extras in my life, so it won't really be hard for ME to do without. As a mom you are used to that! My kids however, will have to learn to do without for a few months. I feel really bad for anyone facing these same issues. "Unfortunately" today I don't have much faith in health care days ahead.

Lo

Lo on a blood sugar meter means under 20. It also means impending seizure, coma or death if you do not ingest sugar NOW. To see LO actually pop up on your meter screen nearly slams you to the floor with a sense of shock and panic. Today that is just what happened. Maddison hit LO when everything should have been just fine.

Two words that make me cringe. Birthday party. The combination of excitement, activities like swimming and food.....and cake with mile high frosting is a hard balance to try and maintain good numbers. No big deal lately, we have been doing great. Bring on the pre-bolus to get that insulin working before the frosting hits! It has always worked before! So the mom running the party (just one house down) knows to give me a 20 minute heads up before cake time. Maddison's blood sugar is 109. Yeah! I give insulin for the cake as they are preparing to gather the kids. I run home to change out my laundry, planning to come back and check out the cake she is served. Maddison is always the only kid at the party that has to have mom or dad stay. So, I was really trying to give the freedom that every parent wants there child to have. One house down, no problem right?

When I came back after about 15min the kids were gathered around opening presents. No cake, presents first I guess. No big deal, I give her some chocolate milk (15c) and figure as long as they hurry up Maddison will be fine. I give her a few animal crackers just in case. As soon as she finished gulping down her milk she hopped up pale as a ghost. She started to say "I feel urgently urgently urgently (she wouldn't stop saying urgently) urgently low" So I picked her up and sat her on the counter knowing this was REALLY bad. I crammed some soda in her, switched to glucose tablets so she could swish the sugar around in her mouth to absorb it faster. Quick check....LO!!! Panic! She looked horrible and I could see her shaking which I thought was an impending seizure. Back to the soda......just pour it in! She was banging her fist on her head saying "I'm making sure this isn't a dream." (When you are seriously low you feel "floaty" and out of your own body) Quick check to make sure her sugar is coming up, 48. Two more glucose tablets, more soda....where is the fucking liver rebound when you need it? I wanted to rip open the cake package and cram frosting in her mouth. But instead I sat there quietly panicked while the party continued. No one had any idea that my child almost passed out into a seizure right there in front of everyone at the party. I was weak in the knees and so mad at myself for trusting my child's life to anyone. I should know by now that no one "gets it" and no one really cares. Cake in 20 minutes to us, means the cake had better be in 20 minutes. I thank god that I came back as soon as I did. I trusted the cake to be served, it wasn't and Maddison could have died. Right there, one house down without me, because of me.

At first I was really angry that the damn cake was put off. I was furious with the mom for changing the plan. But, She didn't know the seriousness of giving insulin without food. I can't expect people to understand that, and I can't expect them to care about the one kid at the party that needs special accomidations. Birthday parties are chaotic. The plans change. You just go with the flow. I thought about telling her today the seriousness of what happened yesterday but I realize that doing so will only make her feel terrible. I also realize that I was the idiot that caused this to happen. Lesson learned, don't trust the food to be there. Do not give insulin until the food is actually in front of you. Unfortunately this was learned at the expense of my child. She experienced the roller coaster because I made a mistake. That really hurts and makes me feel immensely guilty. If something had happened to her I would never forgive myself.

After getting her sugar back up to 94 I had to go home for a quick cry and some angry words and venting to Josh. I asked him to go stay with her since I was carrying alot of emotions and now had puffy eyes and wanted to vomit from feeling so horrible about the whole thing. Over the next 3 hours we had to feed her Gatorade and uncovered carbs to keep her above 70 because of the water slide. Then they had pizza, and THEN finally the cake. -Sigh- I think we must have poked her poor little finger 15 times during a 4 hour birthday party. That makes me very angry at this damn disease. We have had birthday party success the last several times and I guess I had gotten too comfortable. I guess with Diabetes comfortable can be dangerous when the party plans change. Fix the high or low, move on. But somehow I always carry these scary times with me and it takes awhile to feel safe again. Just another bad Diabetes experience that will forever be etched into my mind and never forgotten.

I was right and Insurance is just wrong

Of course I was right about my Thyroid! My labs this week show a quick progression downhill to requiring medication to treat Hypothyroidism. Great, add another medication to our ever growing medical costs. At least I know why I have no concentration or memory and why I am always cold and tired. Its nice to know I am not crazy and I really am grateful this is "only" my thyroid failing me.

I have always diagnosed myself before a lab report comes back. Endometriosis. Ovarian cysts. Thyroid mass. Gallbladder polyp. Heck, I knew years ahead of time that Diabetes was getting the best of me. Geez, you would think I am 80 years old with all the crappy health issues I've had. You would never know it by looking at me! I feel like I look pretty good considering my insides are apparently whacked. I was also pissed at myself to hear my A1c went up from 6.0% to 6.3%, but what can I expect when I have eaten anything that comes my way and haven't exercised in 2 months! AHHHHHHHHH!!! Hopefully starting thyroid medication in the near future will get me back on track.

I know I have no motivation lately, but I think I have been more depressed about our whole health care expenses that seem to take over lately. I'm tired of battling insurance companies to receive payment for pump supplies. I am tired of explaining what each supply is to get coverage from our Medical savings plan. I'm sickened over our dental expenses right now. As soon as we pay off everything, the medical and dental bills appear in abundance. Josh is switching jobs and we won't have health insurance for 60 days. SCARY. Mostly, chasing numbers in Maddison is depressing. I'm just tired of this summer chaos. Summer sucks for Diabetes in a child. We have adrenaline highs 2-3 hours after swimming that I still haven't found the right correction dose for. We have lows 10-12 hours later which means around 2-8 am. That means I'm up many times a night waiting for weirdness and unexpected things to pop up. Yep, another post that is just a bummer. What a bummer. I expected to be at a better place right now. Soon, I know we will be. Until then I guess I'll just vent my bummer posts and move on as always.