The craziness of managing Diabetes in a child. An all and only about Type 1 Diabetes x's two in our house.
I'm not the depressed, obsessed, controlling, nagging, angry, and complaining person that this blog reflects. This blog is where I leave my daily Diabetes frustrations and move on. I do hope I can help others like us by voicing these feelings and being honest, helping you know you are not alone!
This morning Maddison and I attended a meeting with Rep. Trent Franks in an effort to gain his support for the renewal of the Special Diabetes program. Our meeting was very friendly and direct, short but sweet. Our JDRF Rep (Activation Leader) did most of the speaking as expected, which for me of course was a huge plus! I felt very comfortable regardless. Congressman Franks was very personable and relaxed in speaking with us today. Maddison wiggled in her chair silently, with smiles and bobbing little feet in the great big leather chairs. She listened with eyes of wonder, I think she truly has a good understanding of what our meeting was about. The emotions ran wild on both sides as we covered topics of concern with Health care in our nation. The JDRF rep and I both had tears in our eyes as we listened to Rep. Franks speak with understanding of our mission for our children, and our concern of Diabetes exploding around the globe. I left the meeting feeling assured that there are Congressman working towards supporting the Diabetes community in many varied ways. Today I have a sense of renewed hope in what Diabetes research will bring in the years to come.
Maddison did so well in speaking and was very patient despite the fact that she really did not want to attend. We talked about the meeting alot last night and why this was important to not only me, but to every child or adult that faces Diabetes every day. The importance for our future, and halting new diagnosis in the years ahead. She finally sighed a long sigh and said "oh ok mom!" So, we worked together until midnight (eekkkk) to make him a book called "Maddison's New Life" It was heart warming and inspiring all at once. Her self portraits were enough to make you cry. She wrote alot of things in her book that hurt my heart. But, I think that she really made an impact today! And so in the months ahead we shall see......
Hannah is 11 going on 16... I remember Hannah being 2 like it was yesterday. She had to me the most chatty girl ever. Her first word was "Look!" when she was 7 months old, not an exaggeration! Hannah continued to awe me with an amazing vocabulary that exploded nearly every day. I spent every waking moment talking to and playing with her, like most moms with their first child. Wherever we went in the car we spent talking. About everything. From sunrise to sunset I think we read at least 30 books a day, it was what she loved best. I miss those days more and more as she ages. She was my entire heart and soul....she still is of course, but from a distance now as she grows.
Suddenly Hannah is 11 and I want to stop her from growing up! I love my kids home with me. We have alot of fun, we talk alot and we always find something we all want to do. But, Hannah spends alot of time with her girlfriends now. I have been watching her change into this young woman, and it is a scary thing for me. I don't want to let her go, but I have granted more freedom to her than I ever thought I would be able to, being the overprotective parent. Tomorrow's last day of school brings the new title of "7th grader!" oh my! I must say I am very proud. And alot stressed knowing her friends will be becoming more a part of her life than her parents. Can't I just sit and read books to her all day like I used to? Can't I carry her around on my hip explaining the world to her? -Sigh- They aren't kidding when they say time goes faster as you age. So, here's a poem for my "7th grader"....
You'll never really know, my dear, Just how much you mean to me, A mother's love, buried so deep, That only my heart can see.
When I sit and really stare at you, All I can do is grin, Somewhere down deep inside, I see myself within.
I'd never change a thing in you, I thank God that your so fine, Even when your at your worst, I'm so proud that you are mine.
The roads we have traveled, were not always that good, I would take back all the pain you've felt, Only if I could.
I know that I'm not perfect, It's the best that I can do, But everyday, I thank the lord, For a daughter as special as you.
"Hannah" is defined to me as the child that taught me what love is. She is silly. Dramatic. Beautiful, with her Dad's brown eyes. She has my everything else I believe. I see myself in so many things that she does. She is kindly spirited, but also has an "grumpy" side like me. She is very observant. A social butterfly in the right environment. But shy, like me. Grandma sees her as the most polite and respectful girl :) Hmmmmm......She is compassionate and caring with her sister, but of course they have their days. She loves little kids. She loves Volleyball and music. She is an awesome athelete in every sport she tries. She LOVES her cell phone. And I am happy that she has one FINALLY (LOL) She is determined and strong willed. That makes me proud. She loves hugs. I think her most admirable quality is that she is so smart and "witty".....always having a response or smarty comment to make you laugh. This silliness pulls me out of my grumpiness alot of times, she can always make me smile. I love you my 7th Grader!
Whew, I am back to myself finally. The past week I have been feeling really good. I have Maddison mostly adjusted for now. It's scary how when you are going through something so stressful you don't see the light at the end of the tunnel and it consumes who you are. I guess I don't handle stress very well when it comes to my childs health and well being. I'm back to feeling entirely positive and motivated. No harsh words here. My sleep deprived mind and body has been relieved of the basal change and testing chaos. Maddison has had great daytime numbers for the most part, but I am still working on nightime adjusting as usual. My average BS thanks to getting back on the treadmill is at 126 for 30 days and 109 for the last week! Hooray! I am happy to have myself back. I was really hating that person that took me over :(
Let's hope that we can continue on the road to being free of Diabetes feelings. I am hoping it will decide to just live peacefully with us for awhile. No anger, no sadness, no reminder that Diabetes is within our bodies, PLEASE! I guess I tend to blog to vent my frustrations. So, if I am not posting it should be assumed life is good!
OK!! Now it's my turn........I have been tagged by Penny to reveal 10 CRAZY or random things about me.
Again, here are the rules:
Once you’ve been tagged, you have to write a blog with 10 weird, random, facts, habits or goals about yourself. At the end, choose 6 people to be tagged, list their names & why you tagged them. Don’t forget to leave them a comment saying “You’re it!” & to go read your blog. You cannot tag the person that tagged you, so since you’re not allowed to tag me back; let me know when you are done so I can go read YOUR weird, random, facts, habits and goals. Have fun!
1) My worst habit- cleaning too much, expecting a perfectly clean house with 2 kids and three hairy, shedding, water and mud loving dogs! Yet I Still always try, again and again every day to maintain a "perfect" home. It IS exhausting!
2)Fact- I forget EVERYTHING. I ask the same questions, sometimes repeatedly. It drives Hannah crazy. Her response, "MOM! If you aren't going to listen then don't ask!" (perfect example of trying to do too much at one time)I must ask over and over the same questions in the morning "Did you brush your teeth?" "Do you have your homework?" "Do you have your lunch?"
3) I lose my keys once a day and I am not allowed to touch my husbands keys.
4)Fact of my life that I am actually quite ashamed of: I dropped out of high school at 14, went to work full time making GOOD money for that age ($9 in 1991 was pretty good!) I had my GED by 16 and was back in College courses at 17. EMT certified, and Medical Assistant certification by age 18, little did I know kids were to come next and my education would be put on the back burner for YEARS, and still waiting.
5)My life "dream" even as a child was perhaps a bit too simple for most. I never dreamed for fame. I never dreamed to be pampered and live atop a mountain. I would prefer to just be the "perfect" stay at home mom. I guess the soccer mom per say. A woman beaming with natural beauty behind the sweats and shower less days. (of course I would prefer a shower :) A mom that is the queen of organization, multi tasking and never showing stress. The mom that laughs and lights up the room with a simple smile. A mom that is patient, that always has the right answers. That was my outlook for myself in life. Pretty boring, I know. I am just a simple person.
6)If I could pursue anything in life for ME, right now it would be to finish those dang college credits for my bachelors degree! My "dream" for myself (now that I am all grown up) is to complete my RN and pursue a career as a CDE and work with families just like us. I would like to be a mentor to teenagers (and children) with Diabetes that struggle with maintaining a good self care life style.
7) A really outrageous career I secretly envy is the Medical examiner, yes...autopsies! I love Dr G. Medical examiner on the Discovery channel. I have gotten REALLY good at knowing the diagnosis before they announce it! I think the human body is miraculous and knowing there is always an answer or mystery hidden inside at the time of death is completely captivating!
8)I can't sit still. I physically cannot sit through an entire movie without wanting to get up and run laps, clean my house or just do something productive! Even more weird though is the fact that I am actually very disorganized (you should see my closets!) and I HATE laundry. The longer I sit, the more tired I get and my muscles get achey, which is why my desk job is killing me. But, I could sit and watch Dr G or the Discovery Health channel all day.
9)I'm a summer girl. I absolutely love summer by the pool. The sun. The warm summer nights with the monsoons. Summer flowers. The smell of orange blossoms. The sound of my kids enjoying yet another long day home and trying to keep themselves entertained which is always amusing.
10)I was painfully shy in grade school. I did come out of my shell as I aged, marrying my husband has left me talking to anyone and everyone just like he does. My kids are alot like me in that they shy away from being in the spotlight just like me too. Except at home of course.
I am tagging....
Jennifer- a long time friend, because I know you have some silliness somewhere.....
Kris- because I would like to hear your funny randoms
Maddison's Diabetes has me taking an emotional beating today, well..... for the last few weeks I guess. I suppose anyone that frequents my blog can see that. Somehow I have lost the emotional battle AGAIN after doing so well and overcoming so much. This last week I have really taken an emotional beating. And of course, physical in the sense that I have been awakened every 1-2 hours for the last 8 days straight.
We had two better nights from the double and triple basal changes I made. I conquered that fear and brainwashed myself into trusting my decision. But I have to have three good nights in a row to make sure Maddison is safe from plummeting low with that kind of drastic adjustment. Of course, I have not seen more than one predictable night. So, I must check again tomorrow night. That is where I am at. Each night makes the next more confusing. All of a sudden an entire week has passed without progress.
Right now Maddison is doing great during the day. Great daytime numbers, I am so very grateful for that. The weird lows followed one night, not the next. Back again. Reduced basals and the highs returned. Increased it and the lows haunted me all hours, every hour of the night. Although I feel confident that we are almost there, Girlscouts last night kicked me to the curb. They had ice cream sundaes at 730pm! We always avoid ice cream at night, for the high it brings hits us from the 4th to 8th hour! I haven't yet figured out how to combat the ice cream. Then there was the hot fudge on top, and the waffle bowl. 70c later I doubted my guesstimate. Then I was sure I had it right. Then I doubted again. Going to bed at 9pm at 136 and a huge active bolus isn't exactly the way to determine a good basal setting! NO! This was supposed to be a good night of numbers to assure me we are adjusted well. Long night cut short, 74 then 72 then 110 and yep, the ice cream high by midnight.....386. Just great.
In recent months past we have had great A1c's and days carefree without any Diabetes worries. I have stayed motivated and optimistic, truly at peace with Diabetes in our house. It doesn't take long for a bad stretch of highs or lows to drag me down, stomping on me repeatedly, stealing my confidence and outlook on living with this disease. For today, I am too tired from the sleep deprivation to get back up. I know I am a stronger person than this. I know that I believe in myself to get back to where we need to be. I know that we will get back to that point soon as long as I remain confident and diligent, but right now there is not an ounce of strength within me.
Maybe I just need sleep to refresh me? Sleep is very important to the mental strength that I know I possess somewhere inside. But what do you do when you have no choice but to awaken all hours of the night to make sure your child is safe from a crashing blood sugar? Is it the emotional beating I have taken that keeps me feeling so down? Or is it the lack of a good nights sleep? I don't remember feeling like this when my children were newborns. Lord knows a breastfeeding baby is awake all hours of the night too. I guess you have something beautiful to show for your hard work then. Right now all I see is a little girl that is tired. A little girl that needs relief from the blood sugar roller coaster, and I am the only one to stop it. I am determined. I am confident. But I have really taken a beating this time. And, to top it off my sister who I know means well, decides to tell me that RIGHT NOW I need Jesus in my life. That Jesus is my answer to the grief in my heart. As if I wouldn't feel this way right now. Yes, I understand what she meant. BUT, this was the wrong time for anyone to judge my faith, trust or belief in Jesus. Yes, a sister that I speak to maybe 6 times a year feels that she knows how I live my life and what I am lacking. Thanks alot for that beating too, my great sister. You really topped off any feel good I had left.
I am really tired of being a total downer on this blog. That is not what is intended, but it is definitely where I have found myself lately, I have an eerie ability to hide my stress and feelings from others, it is here that I release the wrath of my recent beatings. I don't walk around looking defeated as one might assume reading my posts. (ok, maybe I just look like a bus hit me) I don't spend my day wallowing in pity. I don't sit around doing nothing because I am too tired to move. I carry on without my feelings being sown onto my sleeve. I might not smile quite as much, but I stay strong on the outside for my kids.
Enough of my sob story. I feel better getting that all out......-WHEW!-I had a fabulous Mothers Day surrounded by family and fun, more than I could have asked for. We also have some very exciting fun days ahead. My sisters first baby shower! Family coming in from North Carolina, a long weekend date with my husband.........take a deep breathe.........we are almost there.
The past 3 days Maddison has stayed consistantly in the 250-300 range. Not budging regardless of correction. Regardless of a 150% basal rate. I finally upped her basal to 200%(double)and today just before bed (of course) we are finally seeing improvement. I have been chasing highs the past 2 weeks and serious highs the last few days....for 3 days the increasing rates has me poking her poor little fingers every hour around the clock. Pink eye finished off what life Maddison's little pancreas had left.
What is even more scary than seeing the same high numbers flash across the meter regardless of trying everything? The now double basal rate!! It freaks me out! I look at the basal pattern that was 2.55 per day and now there's the pattern that reads 5.30 and my heart skips a beat. I must be looking at her pump every hour just to make sure the new amounts are programmed right as each new hour approaches. I just found myself checking the pump AGAIN (I just reviewed it an hour ago!)to make sure I have it programmed the way I planned. It's pretty weird knowing that I am in control of my childs pancreas. I have to keep checking the pump to assure myself I haven't made a mistake. I see the .15 that used to be programmed for 7pm-11pm and it is now replaced with .30 which made my heart skip a beat. I thought I was going to vomit. Upping dosages are scary. Doubling them in just two days is down right terrifying. It makes my stomache turn knowing that if Maddison's new rate is set too high then she will suffer a low. A low because I thought I knew what her little body needed. It could be a really bad low. At night you have to be checking enough to catch it. That means you don't sleep, or you awake every hour or so to test.
This is day three of serious adjustments and I have found myself in zombie mode. My eyes burn with fatigue. My head aches with numbers all jumbled inside. Nothing is making sense, not only on the blood sugar confusion, but from simple sleep deprivation. I stare blankely when spoken to. I can hardly add 2+2 and I'm irritable. My own blood sugar sucks. I'm weepy over the little things and overwhelmed with the simple day to day tasks. This Diabetes really is like having a newborn, only this time it is for life. There will be hundreds more changes like this in the years ahead. For Maddison, and for myself. There will be sick days. Low days. High days, and stable times where we find Diabetes doesn't even seem to live at our house. At times like these you can't see the light at the end of the tunnel. You try to stay optimistic but you are just beat- down- tired. Emotionally even more so than physically. Then you see progress and pick yourself back up. And battle again tomorrow. It really is living your life number to number. That is a sad reality.
Maddison is running very high (200-280's) since pink eye last week. She has yet to hit even mid 100 range. I am running high, who the hell knows why. I thought about bad insulin. Changed Maddison's site that left her screaming in pain the day before. She dropped to 101 at one point around midnight last night. Then up, up, up!!
I was watching for basal's that need to be adjusted so I didn't correct until she hit 240 at 3am. So for the record, she was checked at 11pm, midnight, 2am, 3am, 430am and 630am. I was literally falling asleep on the way to work with my own crappy blood sugar at 170!!! What the hell?! Thats even after 3 miles on the treadmill this morning! I suppose it didnt help that the time on my alarm clock said 5am when I got up......I made my coffee, bolused for half to jump on the treadmill, looked at the clock (the kitchen clock) and it was really only 4am!!! GOSH DANG IT! So, I drank my coffee (because I had to) and went back to bed for an hour. No wonder I feel like crap. I never have these kind of numbers and it is really darkening my outlook on things these days! I hate feeling this way. I feel so confused, angry, CONTROLLED, intimidated. It really sucks. I haven't felt this way in a long time.
I am seeing some serious basal changes coming our way, perhaps for us both at the same time! The problem is there is only 2weeks of school left. Just when I get them set right school will end and everything will change. May is going to be a bitch of a month, I can already tell. Where did my optimism go by the way? Even worse, my Endo Appointment is on the 16th and now my awaiting A1c must be all screwed up from running higher!! I haven't logged my numbers -ever- because I have never needed to, (my last A1c was 6.2!!) and I am sure my control freak Endo is going to chew me out for not faxing my numbers as required each month. GREAT. I might flip out on her if she nags at me this time. This is not the time to listen to her trying to give ME advice. I think I need some time away from this disease x's 2. Hmm, not gonna happen.
I called the school nurse this morning to see if Maddison came in FINALLY at a better number.....NOPE! 297. Yesterday she came in at 328!!! She came home at 242!! WHAT!? The nurse just called.....Maddison is now 321 going into lunch!! AHHHHHH......I am going to pick her up instead of having them chase these numbers all day. I will make some adjustments NOW! This makes me realize how good we had it for a few months there. I would rather myself be that high than her. I'm about to pass out and fall asleep in the 170's and she is running around playing and smiling at 300!! Our kids are amazing. Now where do I start adjusting now?
Today our cousin was diagnosed with Type 1 at the age of 33. I promised to always remember the heart ache of that day so as not to minimize the shock and emotions when someone new is diagnosed. It turns your world upside down. After 2 years of living with my Diabetes it is just there, a part of what I do every day. It is habit and routine. Totally accepted, I just do what I have to do. I don't think I will ever get to that point with Maddison's Diabetes. Is that possible with a child?
I never thought I would be sitting here thinking it is "no big deal" to be diagnosed with Diabetes. Don't get me wrong, it is a huge deal...but for some reason when it is an adult I don't really feel the same emotions about it. I remember how I felt, and I know it is likely every person will go through those emotions too. When it is a child though, my heart skips a beat and tears come to my eyes, each and every time. It sends me into a sadness for awhile that I just can't shake. I guess I would say to a newly diagnosed adult that although your heart breaks and you are consumed with fear and grief, it is important that you educate yourself and you will be fine! I would NEVER say that to a parent with a newly diagnosed child. Why? Because Diabetes in a child is heartbreaking. It consumes so much of your life, because every day is changing. You all know how I feel about this.
Maddison summed it up perfectly today when she heard the sad news and said "Well at least it isn't cancer!" She must have heard me talk about how people say that when they dont know what else to say. But, she reminded me today that we are lucky. Even though I am battling her highs after pink eye and my PMS roller coaster, we are here and healthy. Leave it to your 7yr old to put your life back into perspective. :)