He gets it

Today I had a pre-surgical appointment with the Surgeon that will be doing my Hysterectomy. Does it sound bad if I say his age worries me a bit? He must be around 35. Maybe 38. His demeanor is what gives it away. He seems like he is fresh out of Med school, though he has been in practice several years. To me, I say experience is what counts......

All I keep hearing when I look at him, is my moms voice. Her voice, like the day she told me the story of my own birth as a child....

I was a twin. Born at this SAME hospital where my Hysterectomy is scheduled. I was early at 32 weeks gestation. 1977. Prematurity was still not managed as it is today.

My identical twin sister was delivered a few minutes before me. She was the strongest of us two, the one expected to survive. Sadly, she died from "stomach bleeding" just 5 days after delivery. My Mom blames herself, still to this day. Nearly 34 years later.

My Mom to this day feels the inexperience of the delivery doctor is what caused my sisters demise.

Something we will never know for sure.

What doesn't help is that this doctor pushed tube feedings with formulas, when all Mom wanted was to breast feed, to give her breast milk to her tiny preemie child. GUILT. To this day my Mom feels guilt. Guilt for not listening to her heart. She feels like giving in to formula feedings is what caused my sisters demise, even though it is not likely.

Ive always been told to trust my heart......

To this day Mom feels responsible her child didnt survive. Moms heart told her one thing, while a doctor told her another. And she listened, all trusting. Who is to say what really happened?

I always worry I will be all to trusting. Like we were when my Dad signed consent that day. Consent for a surgery that we knew in our hearts he could never survive.

To this day, its hard for me to trust Doctors. Its hard for me to trust healthcare, after what we endured with my Dads last hospitalization.

Ive seen another side. Another side we all like to think doesnt exist.

I know it is silly. I know Dads demise was an entirely different circumstance than what Im facing now. But it all feels the same at this moment.

Im not so trusting.

To remove my ovaries and proceed with HRT? Who is to say that is the right decision? For a T1 34yr old woman with Hyperthyroidism and family history of heart disease, breast cancer and stroke? Who is to say?

This doctor is young. Very young. His experience is lacking for my trust.

But his Super is one of the top advanced GYN surgeons in the WORLD. For that, I feel safe.

After my pre-surgical exam today I met with a hormone specialist. One last appointment before they approved my Ovaries to be removed. They wanted to be certain I knew what to expect for a woman of my young age. I confessed my fears of losing control of my Diabetes with HRT....

Do you know what he said?

He said he understands.

His son was dx'd with Type 1 Diabetes at the age of 2.


WHAT!?

He understands! He REALLY understands!

My heart felt sure.

My heart felt safe.

I have a doctor that gets it.

Really gets it.

So what do I say?

I say I follow my heart.

I WILL be ok in the months/years to come. Because this Doctor understands the complexity of my/our decision.

Because he gets it. He knows.

He must be sent from heaven above.

:)

Alone

2am. Im fumbling for some type of sugar stashed on my bed side table.

Struggling to awaken from a deep sleep.

I cant sit up.

I dont have the strength or energy.

The only thing that pushes me on is my rapid heart beat and sweat on my pillow.

I know I'm extremely low, I need sugar NOW. I can hear my mind chanting.

SUGAR. YOU NEED SUGAR. SUGAR, NOW!

My bed is empty. There is no one to notice I need help. Im alone.

ALONE.

The worst feeling of being alone is at night when a low blood sugar strikes. I rarely have lows at night, likely because I refuse to go to bed with any active insulin from meals or corrections. But, if I do go low at night, they strike with a vengeance.

32.

The worst lows are the lows that wake you from your sleep. There is nothing like the fear they inflict. Especially when you are alone.

No one to help my confused mind. No one to comfort me past the fear. No one to assure me I will be safe.

My husbands shift typically starts somewhere between Midnight and 3am. Sometimes he lays over out of town, or is gone a couple days at a time.

On these nights Im especially careful. I reduce suggested corrections, to assure that Im safe to sleep.

Last nights low was treated with 3 glucose tabs. I hardly remember. I fell back to sleep with chalky half chewed tabs in my mouth. I never rechecked. I couldnt pull myself from the grips of deep "sleep". The only energy I had was to reach for sugar, and chew.

I jolted from my sleep at 6 this morning, fearful. Not sure if it was just a dream. A quick check of my meter showed it was all too true. And dangerous.

I also slept past my 4am alarm for Maddison's recheck after a correction. Now I feel like a pancreatic failure, putting my child at risk because of my own "issues." ALONE at night with Diabetes x's 2 makes me fearful sometimes.

I've been thinking alot lately about what my upcoming Hysterectomy will do to my blood sugars. My hormones will surely be whacked for awhile. The stress of surgery physically and mentally are sure to cause my sugars to go astray, which leaves me feeling very alone at this moment. Anticipating. Wondering how I will manage. I'm trying to make the right decision as far as HRT. I dont know what to expect. I dont know what is right for me. I'm Anxious. Worried. Diabetes makes everything so much more complicated....

The answer/How we do school with "D"

In years past (while at school) Maddie has never carried around anything D related(except a spare meter and candy in her backpack for the bus ride home) because the Nurse’s office was so close to her classroom. The teacher would call the Nurse if Maddi felt low, and the Nurse would come to the classroom within seconds with her school meter and low treatment. If the Nurse just couldn't leave her office, Maddison would simply walk down a long hallway (with a buddy) to get to everything she needed. Quick. Easy.

We were VERY lucky to have a FT RN AND FT Aide all these years!!

Now as we change schools this year and Maddison grows older, I think she needs to be in the habit of carrying her own D stuff at school. But, ONLY if it can be disguised! (not that we hide our Diabetes, we just dont like extra attention!)

I hate to think that Maddison has to carry around a big ‘ole medical bag at school when all the other kids are so carefree. I hate to think that kids will ask questions about her D kit which may annoy her, and I hate to think she will be embarrassed, feel different or stared at because she carries a purse or “medical bag” around at the age of 10. Starting a new school is not the time to draw attention to yourself either, especially at this age when you just want to blend with the crowd! I don’t want to make Diabetes a bigger issue than it needs to be. I just CANT have Maddison carry a big ole bag everywhere she goes! So the answer is....


A TUMMIETOTE BELT!!!

Thanks to the Tummietote insulin "pump pack" as we like to say, Maddison can place a meter, poker and a couple strips with glucose tabs right in the two extra pockets!! The best thing yet is that this insulin pump pack lays flat against her body unlike most insulin pump packs! You cant even tell she is wearing it under most clothes, and she wont EVER be without everything she needs! With the Tummitote Belt Diabetes is Discreet!! No big, embarrassing bag to carry around, forget or lose!

Im excited that for the first time in 6 school years Maddison can carry her own D supplies everywhere in her WEARABLE perfectly invented "TUMMIETOTE BELT!!" No Diabetes bag to carry around!!! (Thank you Tallygear!)

For us, this is the best insulin pump belt EVER, because it can carry so much more than just your insulin pump! It has 3 super Velcro secured pockets, and is made out of swim suit like, stretchy material so it lays perfectly flat against the body compared to most insulin pump packs! One of our 3 pockets on this pump pack has a clear view window so you can use the pump without having to remove it from your pocket everytime! This school year this pump pack is going to be a total blessing in DISGUISE! For us, Tummitote is the answer to keeping Diabetes discreet at school just like we want it to be!

HOW WE DO SCHOOL WITH "D"

The initial plan this year for managing D at school is just a tad different as far as lows. Instead of Maddison waiting for the school nurse to come to the classroom for lows, she will check RIGHT AWAY by herself if she feels the need (using her meter stashed in her Tummietote!!) and take the needed glucose tabs (by cheat sheet) for the low BEFORE walking to, or notifying the nurses office.

The question is, are we ready for Maddison to deal with the low recheck number herself, or do we still need the nurse to oversee what Maddison decides to do next? Bad lows can make Maddison very anxious, and she would likely recheck a low too soon and over treat, even if she has a D cheat sheet to go by. Hey, I cant blame her there! Sometimes the sense of panic (rapid heartbeat) that a low inflicts leaves you stuffing eveything you can find in your mouth! Overtreating is hard not to do sometimes! Sometimes these scary lows make you feel like you are afraid to be alone......Id hate to have Maddison feel alone and scared in class. I can picture her sitting there near tears, with everyone staring at her. Shaking. Pale. Unable to focus. So, maybe its best she does go to the nurses office for every low? I know that for myself I dont want people staring at me as I struggle to keep my composure with a terrible feeling low!

Then of course, lows always have different circumstances. Maybe Maddison ran low all night for whatever reason and needs more fast carbs for the low? Only I would know that. A cheat sheet isnt perfect, and the school nurse can only be as good as a cheat sheet is written. We can't always include all the "IF"S in a written plan! Maybe Maddi has 0.00 IOB and just needs a 4c boost? Its too hard to say if .3 is active treat with THIS, and if .8 is active treat with THAT! I dont want to confuse the nurse, or Maddison with TOO MUCH detail!

Maybe I just changed basals and its obvious something is WAY off? Maybe Maddi is just an hour after a meal and should wait a few minutes and recheck that low feeling because she is going UP, not down? 8c, 12c or 15c at different times has been confusing for Maddison to grasp when we base so much on IOB. There is always so much to take into consideration. School is not the time to be Chasing numbers and over treating lows. It is critical to get low treatment right at school, or the whole day can be a mess with headaches and fatigue being the result! Im not sure yet if the Nurse would be able to come to Maddison for low followup either, and I'm not sure how far her classroom will be from the nurses office! SO, Im still stuck on what will work for low protocol this year!

Maybe I'd like Maddison to manage lows herself by text message to me? This is probably the best answer since a new school nurse would have to learn Maddi starting all new, whereas our school nurse of 6 years pretty much KNEW what Maddi needed based on experience. What I do know is, I want Maddi carrying her own D stuff and I want that low checked by Maddison immediately as it should be. No more waiting for the Nurse!

We will have 4 T1 kids at our new school this year which includes Maddison. Two are teens, and the other little girl is Maddies age! We actually met her through a neighbor and introduced her to our local support group a couple years ago right after she was diagnosed. She attended our support group Christmas party with us that year, but we haven't really seen her since. Its nice to know Maddison is familiar with someone that has "D" at her new school!

School and Diabetes is a very tough balance. You want to limit missed class time, but also not draw attention to Diabetes care or "disrupt" the class. You also want your child to feel comfortable and safe. PE days are always tricky, and recess is BEFORE lunch this year. Hmmm.....

Typically I like Maddison to check her sugar 1.5 to 2 hours after getting to school in the morning because by then her breakfast insulin is about 80% used. Maddison goes to the Nurses's office for all scheduled checks. Morning, before lunch, before PE and 2.5 to 3 hours after lunch.

For lunch Maddi gets half her carb count bolused up front with a correction if necessary. If she is under 80 starting lunch she just gets all carbs bolused AFTER. (which I hate) But, Maddison is a VERY picky eater, and never big on the lunchtime meal, so this has been the only way we can safely do lunch at school. Maddison then has to return to the Nurses office with any eaten/uneaten food for a remainder bolus, if any. For Maddison this has always been fine because she doesn't care about missing recess either.

I think this year with recess being before lunch, I will have her check her sugar before recess. She can then treat a high or low if needed on her way to recess, without having to go to the Nurse first. Then she can just use the recess number to bolus part of her lunch (15c maybe?)and go to the nurse for the remainder bolus after eating to confirmation that she got everything taken care of just right. (Thank you bolus history!) I dont know. The plan doesn't always work the way we want it to. As always, my brain is starting to FRY just trying to plan the new school schedule! 5th grade, here we come!Just 3 weeks left of Summer vacation!

School!

Maddison will be entering 5th grade this year and Hannah will be a SOPHMORE!! Last year at this time I was going through some major ”midlife” crisis issues as Hannah entered High school. Somehow having a child in HIGH SCHOOL made me FREAK OUT. (yes, I AM the perfect patient for anti-anxiety meds!) I worried about boyfriends, peer pressure, drugs, new crowds, what would happen with old friends, parties, all kinds of high school stuff. UGH. It was a tough time for me with a lot of life realizations being made. I cant help but wonder already what will happen with Maddison at that age? High school is hard enough without Diabetes, I get nauseated just thinking about this!
–Sigh-

Luckily my Hannah didn’t go wild like I did (a little) when starting high school. She stuck to pretty much the same AMAZING group of girls that she grew up with, all of which also ended up playing for the school Volleyball team. Hannah made the JV team, and WOW OH WOW did her confidence and pride for her school SHINE! But, sadly (with some excitement) Hannah will be going to a NEW high school this year!! Hannah is excited because their VBall team is AMAZING and the JV coach is a long time family friend. (Hannah also has several friends there already) So this is something Hannah looks forward to. And guess what else? This is the same High School I went to!! How weird is that to have your kid graduate from the same high school!!?? Our plan when our lease is up (October during school!) is to move closer to work, and closer to family.....so, both kids will be starting new schools this year on a variance until we find our new home! Yiiikkkkeeesssss!!!!

Maddison is without a doubt, the main part of this moving decision for us. Educationally she isn’t where she needs to be in some areas, even with her IEP. It took 4 years for me to get the damn school to identify that her struggles were related to a learning disability, NOT her Diabetes and NOT an “emotional disorder”! Educational screening always came back that Maddison was achieving, exceeding (or “borderline”) in some areas. However, this screening never took into consideration that Maddi repeated 1st grade (based on parent choice) and was still struggling to “meet” expectations in some areas by 4th grade. Maddies “test scores” year after year (and her IQ) always showed above average, yet her class work and grades suffered. HELLO! She wasn’t meeting her class expectations because she needed additional instruction and was lost in a class of 35 kids! Test scores aren't everything!!! Anyway, that’s all another story, and a VERY long, boring and frustrating blog post for another day!!

The point is, Maddison was dx’d with Diabetes in first grade, so the school always blamed her struggles on missed class time for D care and “her personal struggle with Chronic illness.” UGH. So TOTALLY NOT my child! She was NOT the same person at home as she was at school!!! FINALLY this past school year Maddi’s LD was officially diagnosed, and at this point I just want to start over!! And, so does she. So now we are, even if that means leaving behind the greatest school Nurse EVER! It breaks my heart to take Maddison away from her school nurse who has helped us kick “D’s” butt since 2006, but Maddison is so much older now and able to safely take on more daily D care without constant supervision, so I know now is the time for CHANGE! Such a bittersweet reality! 2 new schools in a new District this year! I'm starting to feel the stress of preparing for back to school with "D"!!!!!

Authorized

August 2nd is the day.

Ive almost called to cancel several times in the past week...but I know Im at the point that I cant put this off any longer. To say I'm a bit nervous is a total under statement. I dont even know if I'm making the right decision, although my Doctor assures me this is for the best.

I received confirmation in the mail today that our insurance has authorized my Hysterectomy along with up to 5 days Inpatient. Great. Now this is really gonna happen I guess. All I keep thinking is....

What is this surgery (with removal of both ovaries) going to do to my "well mannered" Diabetes? Losing "control" of my Diabetes is my biggest fear in this entire world (besides losing control of Maddison's) which is mainly the reason I have delayed this surgical decision for the past 5 months.

A Hysterectomy is hard enough without Diabetes.

A Hysterectomy is hard enough without high blood sugars.

A Hysterectomy is hard enough without low blood sugars.

What happens when your female insides are all yanked from the body? I'm guessing I will be a hormonal mess for awhile. I still have no idea what I want/should do with HRT. Does this Hysterectomy mean I will surely ride the D rollecoaster? Am I inflicting craziness upon myself? Sheesh. My "normal" hormonal mess is bad enough....but a D mess on top of that? I'm not sure I'm prepared for this....

But, I have to remind myself why I cant put this off any longer.

Im anemic. I've had two ruptured cysts in 5 months that nearly sent me to the ER in excruciating pain. I have back pain that travels down both legs. Almost every day. Pelvic pain. Every day. I have totally random bloating that leaves my normally flat stomache looking like I'm 7 months pregnant. My Endometriosis is getting worse, not better. Even 3 surgeries and 15 years later. Whatever has taken residence in my Uterus isnt going to just disappear, and my poor enlarged ovaries (CA-125 was negative) both have Endometriomas that I can literally FEEL twitching and growing some days. OUCH. Gross, I know. The list continues....but I will spare the details.

So August 2nd it will be. PERIOD. I'm NOT rescheduling, no matter how much I freak out about the expense, missing work, or my Diabetes. Its time to take care of me. Again. I just realized this is starting to be a sucky pattern each August. Last year at this time I had half my Thyroid removed, and the year before that I had two breast masses removed. GEEZ. It seems my body likes to produce masses that cause some initial drama, and then it always ends up being nada. I'm tired of surgeries. Maybe removing my ovaries is the answer? I sure hope so.

So....can I just throw up now? Lets get this over with.

The day after my surgery the dear Husband is going to have to attend my appointment to register Hannah for her new High School. Did I mention school starts
August 15th? Am I freakin crazy!!?? I keep telling myself I need to reschedule this surgery....I cant possibly get the school year off to a smooth start with 2 kids in 2 new schools while being a hormonal (and possible blood sugar mess!!) Back to school is VERY stressful with Diabetes....and Maddison is attending a NEW school this year with new teachers, all new kids, a new school nurse, with a new IEP!! OH MAN. School shopping, IEP meetings, meet the teacher, educate the staff, sit in education with the school nurse....

This surgery isnt the best timing. But it has to work. It just has to. No more delaying what needs to be done. No more pretending. August 2nd it is.

30 miles

60. Twenty minutes after eating breakfast. I’m 30 miles away at work when the text comes in from Hannah.

A sudden rush of fear takes me over. Just like that.

All from one number, and then the what if’s set in.

I quick send a text back to Hannah that Maddi needs 3 glucose tabs STAT. The “ok” response from Hannah seems to take an eternity as I anxiously wait.

My heart pounds, knowing Maddi just bolused for her breakfast not long ago and has somewhere around 3.8 units of insulin beginning to work in her system. Maddison’s insulin is working faster than her food is absorbing, (or her basals are off) which could mean disaster if not tended to immediately.

Im 30 miles away at work, hoping and praying that glucose tablets will solve this potentially very dangerous situation. When I'm home with Maddi and lows happen its not such a big deal, but put 30 miles between us and I lose my cool. The what if's ALWAYS get me. Co-workers around me can see my worry, but they don’t really get it. They dont realize that the same medication that keeps my child alive and healthy every day can also kill her. If timing is wrong. If the dose is wrong. If carbs are counted wrong. If the pump fails to deliver, or malfunctions and delivers too much. If carbs aren’t absorbing due to impending illness, or because a high fat/protein meal slows it all down. Or, maybe today Diabetes just decides that she needs less insulin than yesterday. It’s a dirty game this disease plays!

I begin to wonder....what would happen if Maddi didn’t feel that low? Would Hannah stay calm if Maddi had a seizure? Would Hannah use that massive Glucagon needle to save her sisters life? Would the Paramedics get there in time?

15 minutes later I called Maddi back. She’s 141, and I sigh a deep breath of relief. Disaster averted. This low was an easy fix. Back to life we go. Just like that. We are amazing, us families with D. We keep our children alive, every-single-day. We get kicked down in the blink of an eye, yet always find our way back up. 24/7/365

Now I'm left to wonder what happened. 9 times out of 10 there is a "reason" something goes wrong with numbers. If there is a reason, I WILL find it. My guess is Maddi didnt check her sugar before she ate and bolused for breakfast. My bad. I told her when I left for work this morning that she was 138 and "good" I said, which to her (she explained) meant she didnt need to re-check her sugar before eating....fine most days...but today she didnt eat breakfast for another two and a half hours after I left! THAT to me is the "reason" for Maddi's low this morning (basal set too high!) and she must have been hoovering in the low range when breakfast started and insulin was bolused. Well, it sounds right to me anyway, so for tomorrow Maddi knows now to either eat sooner...OR recheck and delay/reduce her bolus if she decides to eat breakfast late. Now we just HOPE that I'm right for tomorrow :)

Todays Breakfast carbs were added by both girls, and I confirmed by text. BY TEXT. We dose a dangerous medication by text?! Yes, Summer means Diabetes is managed by text message, or a phone call when I’m away. It’s crazy when you actually think about that!

The comfort of having a school nurse to oversee Diabetes is now weeks gone. Maddison, Hannah and I have managed Diabetes pretty well over the past 8 weeks of summer. This summer of D management has been a team effort. Hannah oversees the happenings, and we all text back and forth as needed. Maddison has had very few lows, a couple random 300 highs, alot of in range numbers.....but mostly I see just too many out of range numbers in the low 200’s lately on the days Im away at work. But, whats a Mom to do when she is just a texting pancreas these days?

Its hard for me to say I can or should make insulin dose changes, when I’m not even sure if carbs are being counted right. Carbs will be missed by text. Carbs will be missed by phone call. Carbs will be missed when Maddi is learning the ropes, and highs and lows can easily be over treated. I don’t know if Maddi is zooming through the house with her pets, or lazing around on the couch all day. So, Chasing numbers begins. I feel trapped, unable to make any changes because I'm not sure whats really going on during her time on the D watch. I dont like it, but it just is. I have to let go of "perfecting" her numbers and realize she is more in control now, and I have to tell myself she WILL be okay, even if her A1c heads north because of it. Telling my heart that is another story.

Diabetes is becoming harder for me, because as a parent I have to let go. Id be happiest if I never had to let this sometimes overwhelming burden of a disease fall on Maddi’s shoulders. But that isn’t reality. She is counting carbs, adding and subtracting carbs, correcting, setting temp basals and treating lows on her own every day now, and she only has my help and confirmation by text. She will run higher than I'd like. She will have lows. She will grow proud of her independance, Struggle some days.....but in the end, she will always be ok.