Skittles have been my best friend for two weeks now. I'm totally sugar drained. If I have to eat one more speck of sugar to keep myself from passing out and seizing on the floor I think I will vomit. Or lose it. Temp basal? No luck there. No insulin for food? Doesn't matter. I'm still low, and feeling SICK because of it.
I can't seem to get my blood sugars over 80 for days now! I sit lifeless without energy in between zooming around doing the normal daily things on top of the crazy moving things. I'm near tears most of the day because Diabetes is kicking my ass. Heck, Ive cried more in the last two weeks than I think I have in years. Since Maddison's diagnosis that is.
Sure, the 80 range is GREAT for anyone....but not when you are insulin dependant and packing up a house to move. 80 isn't very far from 50 you know. 50 isn't safe. 50 isn't very far from 30 either. I know. I've been awaken several times from my sleep the past two weeks thinking I'm dying. Heck, I guess I was. 58, 62, 31, 36, 45, 59, 32, 38. One moving day effects blood sugars for the next 24hours. I've been playing this packing, cleaning, unpacking game for 2 weeks now. I'm tired. I'm drained. I've been scared by my own body too many times lately. Diabetes, I hate you today more than ever.
Up and down the moving ramp. Cleaning, unpacking, lifting, pushing, dragging......Moving sucks, especially when you are moving into a smaller home without a spare bedroom! I'm not sure how we have accumulated so much STUFF over the past 10 years, but I do know the donation boxes around town have been stuffed full with our goods. Maddison's beloved stuffed animals (8 huge trash bags full) have found their way to new homes where they will be cherished by children that will love them. Maddison is always so happy to give to others! Damn I love this girl! My spare dishes, pots, pans, Tupperware, blankets, towels, decorative, clothing, shoes, small appliances, and extra furniture will all be put to good use. Good riddance. I think we are almost settled in our new home!!
Today was the day I set my mind to focus on moving forward, a new home and a new start to SO many things in life. I'm back at work today (FINALLY) and things should be moving in the right direction with a new routine. I'm not looking back. I just want to push through this year. I can't wait to see 2010 come to an end. I'm optimistic. I'm kicking aside all the uncertainties that have been chasing me.....And then I remembered...
Today my Dad would be turning 65. My heart is empty. Again. Again I push my feelings aside trying to just make it through the day. Again it is catching up to me. I try not to think about it. But its overwhelming me today. Its not that my Dad is gone. Its not that at all. Its the 25 days of hell it took to get him the peace he deserved. Now he is peaceful, where he should be. No more Dialysis. No more highs and lows. No more Neuropathy. No more chronic pain. Yet, those 25 days of hell are haunting my heart today. :(
I still have yet to actually sit down and process that he is really gone. I still have yet to FEEL those 25 days of HELL in ICU. I built a wall of numbness to make it through at the time. To be strong for my Mom. Someone had to make decisions. Someone had to make sure he received the care he needed. You can read about our fight starting
HERE......The hospital errors. The helpless feelings. The suffering. The numbness and anger of watching your loved one being kept alive on a Ventilator. Because of a medical error. I've always pushed my feelings aside and dealt with the new day. I haven't yet mourned for my Dads suffering because life hasn't stopped throwing shit at me since this time last year. It seems like every single week there is something new that's trying to break me down. But, I am stronger. I refuse to stop and cry. I just move forward and be happy with what we DO have. Happy Birthday Dad, you are always in my heart.
So, anyway, a new home means a new start right? A good time to change. A good time to set your mind back to where it used to be before all hell broke loose. A good time to fight to stay optimistic. We should ALWAYS stay optimistic right? Well, now Im angry. Today isn't going to be a good starting over day after all. -Sigh-
Today I woke up to my beloved Coffee and Facebook updates as usual. Or, so I thought. Today started with a stab in the heart. Chills down my spine. Send me back to bed. The fetal position sounded really good right about then.
This morning I find the news that another 13yr old girl has died in her sleep because of T1 Diabetes. The online Diabetes community is shocked and heart broken.(This is the 5th (?) teen death this year from T1 while sleeping) T1. Type 1 Diabetes. Juvenile Diabetes. Plain old Diabetes. Its all the same. The same disease that has been kicking my ass for the last 2 weeks. The same disease that my Maddison has. The same disease that children everywhere are battling. The same disease that took EVERYTHING from my Dad for over 30 years of his life. His eyes, his kidneys. Thats all I think about when I think of my Dad....how things didnt have to be that way for him. Today, I'm angry. I'm tired. Yet, I'm cherishing life. Mourning for this family. Scared for my own.
And then.....Im angry. Our JDRF Walk is in 10 days and we have yet to see friends and family sign up to join us. Do they think Diabetes is a non issue now since we have been living with it for so long? Do they think this year the walk is any less important to a little girl who just wants her family and friends to gather in honor of HER? In honor of her smile through it all? Do people really think Diabetes is now okay and invisible in our home? Do they? Is it EVER okay to poke tiny fingers 12 times a day and draw blood? Is it ever okay to jab a pump needle into a child's tiny arm? Is life okay now because Diabetes is just routine? Is it okay for low blood sugars to STILL kick my child to the ground? Is it okay for her to wake up vomiting near death because her blood sugar is too high and toxic?!! Is it okay for friends and family to give up on walking for the cure!? Do people think Diabetes is any easier today just because we still smile?
I'll be the first to say it. Fuck the Breast Cancer Walk. I'm sorry for anyone who has had it, loved someone with it, known someone who has died from it....but where is the care and concern for our children with Diabetes? When will the whole damn world care about OUR Cure? Maybe I shouldn't blog when I'm this angry. Maybe I shouldn't shout out what I've been thinking for years....but damn it....Diabetes deserves the same recognition and concern as Breast Cancer. And DAMN IT, people need to know that children are dying from this disease just the same as women every where with Breast cancer!!! CHILDREN!!!! Diabetes inflicts pain daily. Not just physical but emotional. For a lifetime. There is no promise. Even the best "controlled" Diabetes has NO PROMISE OF TOMORROW. NO PROMISE you will be free of complications like kidney failure, amputation or blindness!! Diabetes SUCKS every day for CHILDREN!!! And, Diabetes deserves the same recognition as BREAST CANCER because it is a daily battle for LIFE! FOR OUR CHILDREN!!!! IM SO TIRED of dreaming that other people understood. Im SO TIRED of Diabetes being overlooked and minimized!!!
I'm sorry, but it seems no one has the time this year to walk with Maddison's JDRF team. That makes me ANGRY. We have 15 walkers compared to 40+ in years past. We have raised...hmmmm.....MAYBE $200 compared to 5K every other year. I know times are tough. I haven't asked for donations. I have asked for SUPPORT. Be there. Walk with Maddison. Show you care. Show you understand how she DREAMS and TALKS about a cure. Just be there for HER!! Walk beside her. Thats all I ask. The sad thing is, I shouldn't have to ask.
4 years have passed since that day Maddison was admitted to the hospital with her new LIFE diagnosis. For 4 years Maddison has done nothing but smile through it all. For 4 years Maddison has smiled through being teased by kids that don't understand. She has listened to people's ignorance. With a smile on her face, and pain in her heart. She just wants understanding. Diabetes isnt about food. It isnt about "oh poor baby has to take shots." Diabetes is about fighting for life. Every-single-day.
Tell the mother who's daughter that just died in her sleep that you dont have time to walk for our children this year. Tell the mother who will live with this guilt and anguish for the rest of her life, even though she did everything she could to keep her child healthy and alive. Go ahead. Tell me WHY you aren't walking this year? Tell me WHY. Writing this, Im not sure why Im so angry. I guess Im angry because Maddison still talks about a cure many days while I pray my heart out every single night. I sign on to our JDRF walk page and see NOTHING. NO ONE. No one wants to walk this year. And that makes me angry.
So thats it. What started as a normal day is anything but. A mother is mourning the loss of her child to Type 1 Diabetes. I could be next. Today, that makes me angry because I am stricken with FEAR. We shall try again tomorrow to find PEACE and OPTIMISM in an uncertain world. Today I just dont feel it.