This post is not meant to offend anyone, just venting feelings and once I'm in a better place I will understand you once more...Oh, ass, loser, moron in the last paragraph you can take offense.
Firstly, last Friday, I had to take Cara to the docs to get some blood work done. She has been complaining of stomach aches at school for over a week and a half now. At first I thought "no big deal" (see already started with the shrugging off...not good) maybe she is coming down with something? However as the phone calls of stomach aches escalated from every other day to every single day to twice a day, something had to be done.
I needed to cover 3 bases as I saw it:
Base #1. Talk to the teacher to see what is going on at school to see if there are any issues that she thinks would cause Cara to feel like she needed to flee. At first, these phone calls seemed like a way out. She would call complaining of a stomach ache knowing full well that her diabetes will play a role in us coming to pick her up. Once at home she seemed fine. Suspicious behavior, to a trained eye! Well I spoke to her teacher and she had no idea why Cara would want to leave school, she is doing great in school, she has lots of friends to play with, she is completing her work and is involved within the classroom. Cara of course had nothing to say about the matter or any school issues, just that her tummy hurts. Ok then on to base #2.
Base #2. If a child with type 1 diabetes is consistently complaining about a stomach ache parents brains usually go to symptoms of celiac disease....at least in this case it did. So before I dismissed Cara's complaints I called up her D clinic and asked for a celiac blood screening. This was completed on Friday. Cara did amazingly well, with the blood draw. Our last meeting with the lab technicians did not go so well! It took 4 nurses (1male) myself,a child life specialist and our wonderful nurse M from our clinic to hold her down and draw blood...she was fighting for her life...myself and nurse M were in tears by the end of it all. This time she sat on my lap, she played with the child life specialist and their ipad, the 2 lab technicians came in and we were done...a little squirmy but I will take that!!
Before we drew the blood I explained to our diabetes Dr. (well actually, I explained it to the student doctor who I guess then explains it to our doctor (not a fan of this indirect/direct repeating yourself 10 times approach but what can you do?) that we were having some dramatic lows ever since the arrival of the stomach aches. I gave up that info as a symptom, NOT asking for a 15 minute "lecture" on how to deal with lows! (it was not an actual lecture, more a conversation however in my overly sensitive D mom brain I will deem it a lecture on this here blog) Ugh, and this is where my personality kinda takes over. I understand that the doctor wants to make sure that we are doing something about the lows. I understand that I'm not a "regular" at Cara's 3 month check ups because I send my husband. I understand this!! BUT she should KNOW CARA, she should KNOW us as a working unit. I don't go to our 3 months appointments because I can not stand to be talked down to by Dr's. Every change is a critique in my books. I HATE crazy corrections around bedtime (biggest issue I need to deal with)...HELLO, I have to sleep and I can't sleep if my daughter is going to bed in the 5's. Do you know how many times doctors have done something with Cara's insulin ratio's and said "just keep an eye on her through the night'? What are you talking about? REALLY? and I love how easy it all seems to be!! I. have. not. slept. in. well. over. 3. years. HERE! Yet, let me stay up all night because my doctor thinks it might be "fun" to see what happens if we do "this" to her ratio's...Ugh LORD HELP ME! SEE, this is why I send my husband to the clinic. This attitude of mine is no help! I see everything they change as a refection on what I could not figure out. This is why I get so defensive, mad, crazy over things like this. It all comes back on me, not doing my job to care for my daughter. I know the doctor's are just doing their jobs and I'm sure we would be lost without ours. Really, I like to have someone to converse with but I go all crazy. So obviously this hospital visit for the blood draw and our low "conversation" was straw #1 that broke me and landed me here bitching. Now let me get back to base #3.
Base #3, Anxiety, Cara is and always has been a very anxious little girl. Not sure if it is because of her birth order. She has a strong (personality wise) big sister and again a very social and outgoing little sister so that leaves Cara quite content siting in the middle of these two just kinda "hiding out". Cara has A LOT of irrational fears, and she is sooooo shy can take a good 15 minutes of you talking to her before she opens up and answers one of your questions. So yes, her stomach aches could be a symptom of anxiety. We are waiting until after her results come back from the celiac screening and if they are negative Cara will be seeing our diabetes team Social Worker to work through better ways of dealing with stress. And this thought just breaks my heart that at 7 years old you need help to deal with stress and anxiety?...My poor sweet Cara!
Moving on to my stresses and the on going building of this mood. This morning Cara was 4. something (I don't do breakfast...for many reasons but mostly because I'm busy getting the other kids ready in the morning as other kids eat) So, she is 4. something mmols and that means we wait to give insulin until after she eats. If we give her insulin before she eats when she's low and then she decides her belly hurts we are in a load of trouble and racing the clock trying to feed any kind of carb to Cara. So we wait...however in a crazy house, with a husband who can't seem to find what he did with the 1pound of ham he bought the night before for the kids lunches that he is frantically trying to make before they leave for school administering insulin was forgone all together this morning. Hens, a call from a nures...not OUR nurse because for some reason our nurse is not at school today! By the way, are wonderful nurses who you completely trust and who understands your type 1's diabetes inside and out ALLOWED NOT TO COME INTO WORK?? (for realz though, I hope all is well with her and she is back tomorrow because we love her) So, on this day where insulin seems not to matter to a father, our nurse who is awesome is not at school and I'm busy talking on the phone therefore when the nurse who knows nothing about my daughter (not a rip on the nurse she just really is a stranger) try's to call me she gets a busy signal because yes, we are too cheap to pay for call waiting! So the nurse follows what she is suppose to do, she pushes buttons, and the pump tells her 5.5 units of insulin. Call me a wuss, however 5.5 units of insulin I would never do for Cara even with a blood sugar of 26.2mmols (because REMEMBER no insulin was given at breakfast) I like to do it slowly at school, correct a little more than half up front and then correct the next bit in an hour or so. 5.5 units in my mind would send that kid crashing...so we will see!
Hahaha funny thing to say...we will see? Like waiting around to see if my daughter passes out or worse over a low blood sugar is nothing! Is that something a mother should be waiting and seeing for??? NOPE, I think not...but I am?!?!?! Crazy, just crazy!
So I'm on the phone asking the nurse to tell the teacher that Cara has a lot of insulin on board and just keep on eye on her, allow her to test...blah blah blah and out of the blue this nurse says something about asymptomatic, something like "she was asymptomatic and I told her to drink a lot of water" UGH, yes please through some technically mumbojumbo in my face to make me feel better...WHO THE HELL...I don't need to hear that. I understand you went to school, I know that you are educated...but really don't do that shit on the phone with me, talk like a human being. Yes I'm dealing with a week long stress, yes I have issues with "professionals" (do you think? I just used the " " for professionals) I got it, and funny thing is, I'm so thankful for you, a nurse being there for my daughter I really am, I feel bad about bitching, I do but I'm about to blow because...
I LIVE THIS SHIT ASS D LIFE OF WATCHING OVER MY TYPE 1 DAUGHTER, WORRYING ABOUT HER, NO SLEEP. WE DID NOTHING WRONG TO DESERVE THIS LIFE. RATIO'S AND NUMBERS AND INSULIN ARE CONSTANTLY RACING THROUGH MY MIND. NO, I DO NOT HAVE THE EDUCATION THAT YOU MAY HAVE BUT I HAVE SOMETHING MUCH MORE VALUABLE THAN THAT...WE LIVE THIS, DAY IN AND DAY OUT SO PLEASE GIVE US A LITTLE RESPECT, A LITTLE PRAISE AND A LITTLE LEEWAY. I HATE TO GIVE UP CONTROL, I HAVE TO TRUST COMPLETE AND TOTAL STRANGERS WITH MY DAUGHTERS LIFE...THAT IS HARD TO DO! IT IS IMPOSSIBLE TO DO. THERE IS NOT A SECOND THAT GOES BY WHEN SHE IS NOT WITH ME I'M WONDERING ABOUT HER HEALTH. DOES ANYONE EVEN UNDERSTAND THAT STRESS? YOU ARE THERE, IN CONTROL FOR MEIR MINUTES IN A 24 HOURS SPAN THAT I MUST KEEP ON TRACK, THROUGH FORGOTTEN INSULIN, GYM CLASS, ANXIETY HIGHS AND EXERCISE INDUCED LOWS. I CAN'T EVEN TALK ON THE PHONE FOR 10 MINUTES WITHOUT DIABETES GETTING IN THE WAY. WHEN I HAVE A SHOWER, GO TO THE BATHROOM, DIABETES AND THE PHONE ARE ALWAYS WITH ME. WHEN I WAKE UP AT 4AM AND JUMP OUT OF MY BED LIKE SOMEONE LIT A ROCKET UP MY ASS IT'S BECAUSE MY FOREVER TIRED BODY AND BRAIN HAS NOT GOTTEN UP AT THE 2AM ALARM. BLOOD SUGAR RANGE IS UNKNOWN AND THAT IS DANGEROUS. AND IF I DID GET UP LAST NIGHT AT THE 2AM ALARM I MAY HAVE BEEN ABLE TO FORESEE THIS AM LOW AND BREAKFAST INSULIN WOULD HAVE BEEN ADMINISTERED LIKE IT NORMALLY IS. ALL OF THIS CRAZINESS WOULD HAVE BEEN AVOIDED. THERE ARE NO BREAKS AND ALL I WANT SOMETIMES IS A PROFESSION TO GET THAT!! I APPRECIATE YOU, YOU HELP US BUT PLEASE WHEN I TALK JUST LISTEN. YOU LOOK AT NUMBERS, CALCULATE AND GIVE AN ANSWER THEN MOVE ON TO THE NEXT. BUT DIABETES IS SO MUCH MORE THEN THAT, IT'S NOT ALL ABOUT THE NUMBERS, IT'S ABOUT THE LITTLE GIRL ON THE OTHER SIDE OF THOSE SHIT ASS NUMBERS. WE ARE JUST PEOPLE TRYING TO DO OUR BEST, AND IF WE FAIL, IT IS NOT OUR BODIES THAT SUFFER IT IS OUR CHILDREN WHO TAKE THE BLOW.
Yes...a little sensitivity much? One word, one simple word,this poor nurse was just helping us and BOOM MY BRAIN EXPLODED AND MY FINGERS STARTED TYPING since I'm not stupid enough to say this to her/them. But this is how I feel and I needed to share, so thank you for reading and listening and maybe even understanding.
Oh and one more thing that I need to mention and get off my back. To the Jack-Ass who took the time to walk by a table advertising an event to raising awareness and funds for a cure for type 1 diabetes who then had the nerve to turn all the way around and say to a very sweet young girl who was volunteering at the table "I have a cure for you if they would get off their asses and ride some bikes and get some exercise...there is their cure!" (something along those lines) then walk away...You sir (use that term loosely) , are so very very lucky that I was NOT the one behind that table!! IGNORANT PEOPLE!!
Ok, thanks for reading I must now go and clean my house.
oh and not to worry OUR nurse called and the 5.5 unites worked out perfectly Cara was 6.5mmols at lunch and nurse A is back for pm snack...I feel so much better now!
