I hope you know....

I'm not the depressed, obsessed, controlling, nagging, angry, complaining person that this blog reflects. I think I need to add that in a disclaimer on my main page! I had a co-worker come to me today to tell me I am not the person she sees in my blog. WHEW! Thank goodness! She assured me she sees me as a optimistic and cheerful person. I think if I were the person my blog reflects I would be looking pretty sad most days, a bit like a teenager that is "EMO". (I do feel as though I have aged 10 years in the last 2 though!)

I have probably lost alot of readers of my blog from simply complaining too much and being too depressing. It isn't any fun and it doesn't feel good to listen to someone bitch all day, I know. This blog is where I choose to "purge" my Diabetes thoughts and move on with my day. I have a husband that is gone 80 hours or more at work every week.(he has a co-driver and gets to "sleep" in a Semi- truck!)I have two young kids, three Golden Retrievers and I work part time in an office all alone. At home you will find me being a Housekeeper, Teacher, Gardner, Personal chef, full time Pancreas for two, Laundry slave, Psychologist, Secretary, Chauffeur, Entertainer, Dog groomer, Pack leader, Dish washer, Plumber, Pool Maintenance Technician, Seamstress, Computer Engineer...you get the point. I dont get a chance to talk to anyone most days about anything, and certainly not to anyone about Diabetes which would eat me alive if I didn't get a chance to scream from the roof tops about how much I HATE this Disease! So, I purge it here. All truthful feelings. Nothing is censored or left unsaid fearing that someone will think I am crazy. Just the sad realities and cold truth of how I feel day in and day out living with Diabetes and chasing numbers in my child.

I could pretend I didn't have these feelings and pretend I am always optimistic and finding the "good" in everything. I could pretend that Diabetes isn't that hard and that I am all cool and calm and in control. I could stuff my feelings down until I explode. I learned the hard way that a mental breakdown CAN happen and I promised myself to never go there again. I promised myself that in this blog I would purge my anger and get on with my day, and I do. The weight is lifted. I feel like I am being heard. I feel like I am actually shouting from the rooftops every single day and that in itself is empowering. To be heard, and I mean REALLY heard with all honesty is what saves my sanity.

And, by the way .....I also think that I wouldn't feel SO overwhelmed and crazy every day if it were JUST me with Diabetes. That I could do! But give Diabetes to your 8 year old pride and joy in life and it is pretty devastating. Every day. You may not feel it everyday, but your sub-conscious takes it in everyday and hides it in the back of your mind. Or at least mine does. And it waits. It waits for a "bad" Diabetes day and will come crashing down in a total emotional crying meltdown. I cry it out, hide in bed all day and then I am better. This is me. I have always been this emotional.

I hope you know I am someone that sees the light in every day. I am someone that doesn't take anything for granted and I certainly don't carry gloom everywhere I go. I see the good in everyone, instead of the bad. I even see the "good" in having Diabetes! I bet ya didn't know that one! I am always smiling (even when I feel like crying!) and I am honestly a happy person despite what is reflected here. I just hope you know.

I don't like change!

The constant changing and fighting to keep up them is what is really the hardest part of Maddison's Diabetes for me. We can handle the shots, site changes, carb counting and correcting. We are at peace with the disease itself. We just have to deal with it, and we do so actually very well. I just don't like the constant changes I have to keep up with. When we have some good stable times I don't fret the highs and lows. They don't bother me then. But when the highs are persistent regardless of my diligence, I start to lose my sanity and I become very depressed for what Maddison is going through. I feel like I am hurting her, and in reality the high blood sugar is. If you think it isn't, you are lying to yourself. Maybe it bothers me so much because I understand what high/low feels like? -Sigh-

That was my double Diabetes thought for today....on a better note, yesterday I took Maddison to volunteer at the bird rescue. They asked Maddison to return just before dusk to pick up a Grey Horned Owl that was ready to be released! Maddison was soooo excited! We released him in a park area about a half mile from our house. The girls and their Dad ran after the owl to take pictures as he flew up high into the trees. They finally lost sight of him and he was F-R-E-E. What a great feeling. When we returned home HE WAS SITTING RIGHT ON TOP OF OUR ROOF!!!! How awesome and strange is that!!?? Of all the places to land he landed on OUR house!

I told Maddison he must have come to thank her. She worried about that owl all night. First thing this morning she went outside to check for signs that he had been near. Tonight she plans to find her binoculars and hide out in the bushes to watch for his return. What a blessing to have found this bird rescue. The director/owner is so kind and caring to Maddison. She spends time teaching her so much. She really wants Maddison to pursue her dreams of being just like her someday. I wish there was more I could do to show my appreciation for her. I think I will have to send her an email today......

Reality and new realizations

Hearing some children have been diagnosed around us these past few weeks has made me think alot about how this horrid disease tricks you in the beginning. You really have no idea what lies in the days ahead, much less the years ahead. Even as an adult with Type 1, I had no idea back then what management meant for a growing child. Back then I had no idea that insulin needs would change so much, so often. Since the "honeymoon" has ended and nothing seems to show the result I expect lately, this is the new reality that I am struggling to accept. Maddison's Diabetes has never been this difficult before. I am having more startling realizations every day.

After the initial shock, devastation, fear and despair that diagnosis brought, we got back to a new life with Diabetes. Life was good again. Months into the shots, finger poking, carb counting and going through every imaginable emotional distress, we finally gained confidence in managing the disease. Then the reality sets in. You realize that 24/7/365 you live by numbers. Numbers that mean so much, but yet the Endo's tell us to not worry. Just do our best. You start to see the reality that Diabetes changes ALL the time. Even scarier, only you as the parent knows your child best and can make the right adjustments. (at least in my experience) This brought me back to square one and I ended up going through all the initial emotions over again. I was even SHOCKED that THIS is really Diabetes. Who knew? Didn't we all think we just count the carbs, inject and it turns out right?!! You begin to realize that Diabetes isn't as easy as they lead you to believe. You finally realize that craziness is the name of the game and you aren't alone. It really is just this crazy for everyone. Reality? You have to just make the best of it while still feeling like numbers are never "good" enough. What a horrible day that is when this realization hits!

When things got crazy in those first months I remember thinking I must be doing something wrong. Years into this, I know it isn't anything I am doing wrong, and that is even scarier. Nearing two years of managing Maddison's Diabetes I am amazed at how much I have learned. I'm amazed at the parents that never give up and constantly battle for a better A1c. Us parents survive on little sleep and continue to wake every few hours to check blood sugar..... every single night.... hoping we can at least keep night time numbers better controlled for better health. We actually grow used to disturbed sleep AND accept that it will be this way until our child leaves home. (Or at least until they wake for lows at night) This is reality for most parents with Type 1 kids.

I used to wonder how parents had a child with an A1c in the 8-9% range. How could you let it get that high I thought!?? "I will never let that happen" or so I thought!Now I know how the higher A1c's happen, and I know exactly why. In the beginning Diabetes tricks you into thinking the Honeymoon will last forever and the A1c will always be so "easily" maintained. I never thought about what happens when your young child grows up and has raging hormones that are resistant to insulin. I never thought about Maddison being responsible for her own blood sugar checks, correcting them, bolusing and counting carbs away from me. I never thought about her just wanting to be "normal" and wanting to ignore the need for blood sugar checks and injections in front of all her friends! (okay, I have thought about this alot, but I wasn't realizing how fast this is approaching!)I have always planned to see to it that these things are done "perfectly" myself. I had myself convinced for a long time that I was in total control of each and every A1c! Hello! REALITY CHECK! Maddison is eight and her Diabetes isn't in my "control" much longer. Of course we teach responsibility and we teach her the importance of caring for her Diabetes.....but my support group moms this weekend made me realize how much stress is yet to come when Diabetes isn't exactly mine to "perfect" anymore.

So yes, this weekend I spent some time with moms from our support group. Now I find myself struggling with these realizations that are honestly freaking me out. Moms deal with so much when their young daughters approach the teenage years, add Diabetes to that and it scares me to death! These moms have been managing Diabetes much longer than I have managed Maddisons. I am realizing that it doesn't get easier....it gets harder with even more to consider. These Moms are amazing for everything they do to keep their child's life "normal" yet safely under control, and I don't think they realize that. They have to give responsibility to their children without burning them out. They have to tiptoe around social issues, control issues and so many teenage emotions I can't even begin to imagine! I don't want to think about having to balance a teenagers hormones and other issues when I can't even seem to balance an eight year olds stressful school days! Reality is....those days will be here before I know it! Older kids decide if/when they want to test their blood sugar. They decide if/when they want to bolus or not. They don't have mom or the school nurse deciding for them. I'm terrified of the teenage years, but I am thankful I have my support group moms to follow. (I love you Beth and Kristi!)

So I guess reality is again closing in on me. I think I had better start to find a way of letting go of what I expect to micro-manage in the years ahead. I know, I think too much. I usually just think about today and deal with it. I really shouldn't be stressing about tomorrow and certainly not stressing about years from now. But now I suddenly feel a sense of panic knowing this is only getting harder as Maddison gets older. I really thought it got easier. Wouldn't you think being more experienced means it gets easier? In the beginning with Diabetes they trick you into believing that it does get easier. They tell you how "one day it will all just be a new normal" well, as much as that is true.....it can't be farther from the truth at the same damn time! (I'm now keeping my sense of humor and laughing in a strange way) -WHEW!- I feel much better already just spilling these new found realizations from my mind! I know I sound entirely crazy right now. These are the kinds of things I stress about when I can't sleep.

I guess I need this reality to be my positive motivator. I need to tell myself that the true reality is no matter how hard this gets, I love Maddison more. She will never be alone when she faces this disease for herself as she goes off into the world with Diabetes as her own. And, she knows that. Reality is, at age 8 Maddison knows alot more than I give her credit for. She will be just fine when it comes time for her to take over the majority of her care. I'm realizing more every day that Maddison and I are in this together for a reason........

Tomorrow

Every day I keep thinking that TOMORROW I will be myself again. Energetic, motivated, determined........cheerful. My first thought every morning is that I need to call in sick to work and sleep all day. Then as the day progresses I end up more and more angry with myself that I just cant snap out of this "BLAH" attitude! I'm not miserably sad....I'm actually numb to most emotions lately. I don't have any energy, and I don't care much about anything although I spend enormous amounts of time feeling guilty and frustrated about everything in life. I'm used to running circles around at home, eagerly working off my energy and inability to sit still. Yard work, chores, errands, taking Maddison to volunteer, and escorting kids here and there was what kept me busy. These last few weeks my house isn't maintained everyday as it used to be. Laundry sits. Three Goldens beg to be walked. Bills need to be paid. The pool is a mess. Clutter surrounds me and everything waits for tomorrow.

I know the "simple" start to my lack of energy is to get back to my treadmill each morning. I know how great I feel after a good workout, but at 5am every morning my alarm clock sounds and I hit snooze for an hour. My treadmill sits. I just can't drag myself out of bed. I spend alot of time feeling guilty for that, especially when I can't fit into my jeans anymore! The three wild Goldens try everything they can to convince me I can do it. But I guess I just don't care enough to make that first effort. Every day I say "TOMORROW" I will get back on track. And everyday ends and starts with me feeling BLAH. I'm so tired of everything.

A big part of my "Blah" attitude is of course, Maddison's school issues. I just don't know what to do anymore. Our IEP meeting went great and I feel confident that our team can really turn things around for her in the classroom. Confidence in her teacher however, is a different story. Stress still reflects in her blood sugars every day at school. We have made progress with her afternoon numbers, but even after making some more changes today for morning highs she ended up even higher which I didn't imagine would possibly happen!! She eats the same breakfast every morning. She has a new school basal pattern set in her pump and a weekend pattern. I feel so disgusted that I can't get it right after 10 weeks of school and even more disgusted with myself for just giving up and deciding it is what is! How is she supposed to do well when she is high 200's every morning? AND WHY is this not an issue at home!!?? STRESS!!Because my 8 year old daughter is stressed in her classroom and that sickens me!! Literally every-single-day I believe we will see progress. Every day I say tomorrow will fall into place and I never give up making it right. I'm tired of tomorrow and I want it to be okay TODAY!

COBRA has me feeling BLAH. We are nearing financial crisis and have had to deplete our savings to pay for health insurance. We don't have an extra $800 a month to pay for COBRA. But we have to, and we have been. Somehow we always make it, I just don't know how much longer we can. Very scary.

Our JDRF walk is in 12 days and I lack any motivation to get things together. I'm not interested in fundraising. I'm not chasing around someone to sponsor our T-shirts for the team. I really don't care at this point. I want to go to the walk, have fun for the day and have Maddison feel proud of the friends and family that support her. That's about it.

I used to make plans for our family. I used to work towards goals. I had an interest in micro managing my accounts at work. I wanted that promotion. Now I can't wait to crawl in bed every night and hide from my BLAH feelings. This isn't me. It makes me feel guilty that I don't have the strength to turn myself around. Maybe it has nothing to do with strength? Maybe I really just don't care anymore. I still have some good days, and I DO want tomorrow to be the better day that motivates me and chases away this BLAH me.......tomorrow I need a push in the right direction.

Letting it go

Hannah's blood sugar 2 hours after a 13c "Viactive" yogurt drink was 123. She had just fallen asleep, but she still knew I was coming for her finger poke. And, of course she tried to fight me. I will never understand why she is so fearful of a little finger poke. Maybe she is more fearful of the number than the poke itself. I was a bit frustrated with that number because it wasn't a clear under 100 result. It wasn't over 140, so I didn't have a heart attack. Her morning fasting has never been under 106. But I let it go and I was happy with the 123.

The next evening Hannah came in from running around outside and said she was "shaky" (which she has been several times in the past!) and weak. It had been about an hour since a good balanced, healthy dinner. She told me "I think I'm low" and I just kind of stared at her. I thought, what the heck does that mean? Hannah who is nearly 12 years old and will scream, cry and hide from a finger poke wants me to check her blood sugar? Well, she must if she is telling me she feels low! So I tried to explain hypoglycemia in people without Diabetes. She wasn't convinced that I should check her. I realize I should have respected that since I just "tortured" her the night before with a finger poke, but come on....one second....one poke....it could tell me alot. It could keep her safe if she ever did have serious hypoglycemia I would be a step ahead of knowing! We can pretend that our family genetics aren't crap, or we can try everything possible (Trialnet studies!)to make sure Hannah stays "without" this curse. Maddison pokes her tiny fingers 10-15 times a day and honestly that has made me without much sympathy for one poke here and there.....

After fighting Hannah for her finger for several minutes I began to lose my patience. I finally told her to suck it up or I am taking her in for blood work. Finger poked. She ran to cry in her room. My heart broke feeling horribly guilty for doing this to her. She was 102. BIG sigh of relief. Then of course my mind starts wondering if maybe 102 IS low for her. Then I stopped myself. I'm done, I'm letting it go.

Haunting my sleep

We have all had dreams, even nightmares about our Diabetes. I mostly have had nightmares that I will one day awaken to the sound of Maddison down the hall having a seizure as I sleep. I have listened to other parents describe the sounds that alerted them to their childs seizure in the night, and those words haunted me every night for the first year after Maddison's diagnosis. Now as we near our 2nd anniversary of living this nightmare of a disease, that fear isn't so much in the front of my mind. Of course it is inevitable that this fear will again cause sleepless nights in the future when a random low strikes in the night. Sometimes, when she is sleeping and makes even normal sleep sounds my heart skips a beat, and for a moment I gasp, touch her sweet forehead, and then find myself running for the meter.

It isn't the fear of a seizure haunting my sleep lately. Time has brought some comfort in laying those nightmares to rest. For now my sleep is being haunted by fear of Diabetes striking again. I worry about my nieces, my sisters, cousins, anyone in my family. I even worry about children out there that are suffering without a diagnosis yet. The horror stories of children being diagnosed in DKA are so heartbreaking to say the least. I worry about my fathers failing health from the Diabetes he could never control. But mostly, I am haunted in my dreams about the symptoms I see in Hannah. My sweet Hannah. I know I have promised myself to STOP worrying about Hannah. I even came to the point that I KNEW in my mind that worrying cannot prevent anything, and that I need to let it go, and I DID. The last few weeks I have had many dreams in which I could actually feel my heartache. It was as though a precious life was taken from me and I could feel the overwhelming emotions as I slept. I've been dreaming that Hannah will soon be diagnosed.

I'm really trying not to think anything about her waking to use the restroom at night. I can't hear my alarm clock in the morning but I sure do hear her flushing the toilet at 1am. Weird. She is always hungry, very tired. Thirsty. Sunday she complained of stomach pain. This morning her breath smelled different. Maybe it is just time for a higher dose of anxiety medication. Maybe all of our other current stress is just bringing out my normal paranoid self. Maybe I am just too darn worried about her not having any health insurance right now. Knowing if she were diagnosed with something right now we would be eternally screwed with healthcare expenses. I guess I feel guilty and worried since we didn't place her on our COBRA policy. I know she is okay! I know that if she wasn't I would know immediately and not be cursed with the denial I went through with Maddison. I am planning to do some serious relaxing before bed each night to chase away the Diabetes demons that have been haunting me! I just want sleep to be my peaceful place again. I wonder if that is even possible for people with Diabetes. If it isn't being worried for Maddison, it is being worried for myself. I hate that Diabetes does this to me!

Wild goose chase!

Maddison's first day as the official "Bird Releaser" was great fun! After capturing the Ducks from their little pond at the sanctuary ((which was truly a Wild Goose Chase!!)) we were off to the park to set them free! Even that mean old protective Goose left well alone and welcomed the cute little ducks to the pond. It was a perfect 72 degrees in Phoenix, with warm sunshine and a crisp breeze to fuel Maddison's excitement. The little sparrow Maddison saved last week is doing great! Once he grows back his flight feathers he will be the next to be released back into "birdy paradise" as Maddison would say.

School last week wasn't so great, of course I spoke too soon! Maddison had strep throat by Friday and now we both have a yucky cold. Maddison feels "brilliant" though, and she is zooming around the house being crazy with her sister. I think my thirst from running a bit higher is about to drive me insane. What torture! No amount of water can drown this thirst, I'm running in the 180's...imagine the thirst if I was in the 300's!!! Sheesh! Its like an itch you just cant get rid of! Maddison's numbers were great all weekend, send her to school today and BOOM! 298 was back after breakfast! ERRRR! I have to figure something out, last year she had a pattern for school and home, so I guess that is what we are looking at since no other adjusting seems to work.

We are crazy busy getting ready for the JDRF walk in just 2 weeks! We have a car wash this weekend with our awesome support group families. I was contacted by our friends at the local JDRF chapter to talk about Diabetes and Halloween. Our city of Peoria newspaper is going to do an article on Maddison and how our Halloween has been effected by Diabetes. It is kinda funny because we all know it hasn't really been much of a change, except now we count the carbs and jab ourselves full of insulin praying it turns out right! As a parent of course, I will probably be up chasing numbers all night. And, for Maddison we do avoid the "sweets" and go more for the chocolate, hoping to avoid a HUGE spike. Yeah, that is funny. We don't get a spike with chocolate, but mom gets to chase the delayed high all night! So today I had to issue a picture of Maddison and paragraph of our experiences to get this article going in time for Halloween. It should be interesting to see how they could possibly butcher my paragraph and entangle my words. That always seems to happen with articles. Oh well. It will be fun to add that to our list of helping to raise awareness anyway!