Wednesday, July 30, 2008

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.....

Thursday, July 24, 2008


"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.

Sunday, July 20, 2008


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.

Tuesday, July 1, 2008

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.