This is my Sweetness now.
Monday, March 26, 2012
Wish I Had Recorded It
So my dear Sweetness has had a rough year as a sixth grader. Her & her BFF drifted apart since they don’t have classes together and don’t live close enough to hang daily. Sweetness has taken that very hard since she is a very loyal friend and tried hard to maintain the friendship. She doesn’t fault the other child and holds no ill-will towards her but misses her friend.
She has tried numerous times to find a new bestie with little luck, none measure up to her old bestie. Sweetness has always had a slightly difficult time making good friends. Some girls don’t like her having never even met her. Some are fair weather types that blow in and out with the weather. Sweetness is friendly to everyone and never judges anyone. She is the first to step up to defend a student being bullied, she is the first to offer assistance to a student struggling in class, if she sees a student lost in the lunchroom (holding tray with no idea where to sit) she invites him or her to join her table. She has a few friends that she eats with regular and enjoys their company but they each already have a bestie.
The week prior to spring break she was invited by a neighborhood friend to join her and two other girls to eat lunch in their math class. The girls would occasionally help their teacher but mostly spent their lunch period laughing and dancing. Things were looking up for dear Sweetness.
She was even beginning to feel as though one of the other girls wanted as much as she did to have a real bestie. Oh what joy. UNTIL – last Friday when the two girls realized that when the new middle school opens next fall Sweetness will transfer to the new school and the other student will stay at their current school. Drats.
All weekend Sweetness moped about because of it. Today she texted me a number of times from school (hiding in the bathroom – she gets to keep her phone on her per her 504 but is not supposed to be texting). One of the texts was “I am having a not so good day” to which I responded “Sorry baby – some days are just like that – even in Australia” I got a “Nice. Love u.” in response. I hope it made her smile.
When she got home I “invited” her to peel potatoes and while she was peeling I encouraged her to keep building the friendship with the new friend. They can continue to text and Skype over the summer and the years beyond until they are reunited in High School. I asked her what made this new friend so special.
HERE IS THE PUNCHLINE AND WHY I WISH I RECORDED IT FOR FUTURE USE….
Sweetness, “Because she is so much like you. Her humor, her sarcasm, they way she is always singing and all her movie quotes. I like her because she is you.”
Holy Cow – I waited a bit for her punch line but it didn’t come. She didn’t ask for anything. Could it be that my child actually likes me? I almost told her to check her blood sugar to be sure she wasn’t low and thus delirious. How long can this last for? If I had it recorded I could use it to remind her that once upon a time she really did like me. How lonely can my dear child be if she is drawn to qualities in a friend that remind her of her mom?
This is me and Sweetness the day before she was diagnosed.
I just wanted to share her with everyone since she makes me so very proud every day.
Sugar brings you Down
The title of this post is not exactly what you would expect to see on a blog regarding diabetes but for middles (btw my middle son suggested that I actually call him “middles” instead of just “middle” when referring to him. He believes it sounds “cooler”) who does not have diabetes sugar does bring him down. Of course it takes him to a “high” first - that sugar rush that we all know as a burst of energy and giddiness. Unfortunately it has the opposite effect a few hours after the sugar high.
Saturday I took middles to a campground to hang with friends and celebrate one of the friend’s bday. It was a good hour from our home so I did stay and visit with the bday boy’s mom. I left middles to his own devices, playing with water guns, biking, playing football, and hiking – all the fun stuff associated with a campout. However, I should have paid closer attention to how often he visited the cooler. Turns out he drank 3.5 sodas and 4 rice crispy treats somewhat behind my back. I mean he didn’t ask for permission (all the boys were doing it) and didn’t advertise what he was doing. I figured it out a few hours later when he was exhausted, whiny, and very emotional. Had I had a Glucometer with me I would have tested him. Like I said he does not have diabetes but I still worry – (praying that it isn’t true that bad things come in 3s).
His complaints included: headache, fatigue, and tummy ache – not to mention the teary-eyed whininess. I suggested to middles that we call it a day and start heading home. Of course he didn’t agree – fearful he would miss out on some fun activity. So he lied down on a hammock to relax and rest until it was time to open gifts. The excitement of gift opening brought him up and then the boys were off playing with water guns again. All was well until middles took a spill, skinning his knees and causing his emotions to take a severe down turn.
The other boys had consumed nearly as much sugar but didn’t seem to be as poorly effected as middles. This thought plagued me on the long drive home. I had decided to test him when we arrived home but got busy with my other two and cooking dinner. I sit here now wondering what the meter would have said, wishing I would have tested but at the same time not sure I would want to know the answer.
Sunday, March 25, 2012
Stuck in the middle
I have three children. Yes two of them have diabetes and their stories are always relevant on a blog about diabetes but there are times when my non-diabetic child story is also relevant.
My second oldest is nearly 10. He is an amazing child. Always polite and very loving. He is exceptionally bright and always thoughtful. He is also hyper-active, a bit lazy, absent minded, knows all my buttons and plays his daddy as well as he plays his guitar.
Being a middle has a whole set of difficulties (I should know – I am one too). My middle has all the classic characteristics of being a middle child. He struggles for attention and plays the victim very well.
“Middle kids bemoan their fate as being ignored and often grow resentful of all the parental attention given to the oldest and the baby of the family, and feel short-shifted. Three kids triangulate sibling relationships, with one child at any given point feeling like the odd man out from the chumminess of the other two.” http://today.msnbc.msn.com/id/14335112/ns/today-parenting_and_family/t/what-are-effects-middle-child-syndrome/
My dear middle has been hit harder than most other middles. In addition to being the middle kid he is the only kid without diabetes. He is also my only kid not attending the Quest “talented and gifted” class in school.
While I am *fairly certain he isn’t disappointed that he does not have diabetes. I know he resents the fact that he has not been approved for the Quest program, despite numerous attempts at the tests. He is extremely bright – all my children are and I am not sure where they get it from. He is in the advanced math class but so are his siblings so that doesn’t make him special (in his eyes). *Sometimes I worry that middle wishes he also had diabetes so he could get the extra attention he perceives sweetness and sugarboy get. He desperately wants to attend the Lions camp for kids with diabetes and he can’t because he doesn’t have diabetes. I pray I am wrong and he never truly wishes for diabetes.
On top of those differences, he often feels lost (his words). My dear daughter (sweetness) and my youngest boy (sugarboy) have things that they just seem to be natural at. Sweetness loves her art and singing. Sugarboy is a soccer superstar and can play nearly all sports well without trying. My middle has poor depth perception due to a lazy eye and has poor coordination. His vision has been improving and wearing contacts has helped improve his abilities in games involving flying balls. His poor coordination has also been improving as he grows. He has always been in the 95% for his height. I think that his above average height hindered him early on – Gross and fine motor skills develop as a child grows and having long limbs without the gross motor skills to move them effectively can make for awkward movements. The opposite is true for sugarboy. He has always been below the 50 percentile for height – his shorter than average limbs have always been easy for him to manipulate – making him a superfast, tiny target that could turn on a dime. Middle has always been jealous of sugarboy's endless talent in regards to athletics.
We try our best to give equal attention to all our children. We celebrate all their successes and discipline equally. Yet my middle often expresses his belief that the other two get more and get punished less.
My biggest dilemma lately was that my middle was invited on a one night camping trip with another family to celebrate their son’s birthday. The boy that is celebrating his birthday is the sweetest child ever and I am pleased that my middle has developed the friendship. The issue I have is that we have had a fairly strict “no sleepover” policy. Partly because my dear husband grew up in a home in which sleepovers were not allowed so he has that mindset (unlike me – I spent many a nights away from home with various friends – my parents never met most of my friends parents). Our no-sleep over policy was also due to the early diagnosis of sugarboy. We knew that it would eventually be an issue so we set the expectation early on that we wouldn’t do sleep-overs.
So here we are wanting to allow Middle to build the friendship but also knowing that allowing him to go on the campout would inevitably cause a mutiny with the other two. My kids are very bright and sweetstuff and sugarboy would recognize that Middle was allowed because he doesn’t have diabetes. We always tell sweetstuff and sugarboy that there is nothing that diabetes will stop them from doing but really at their young ages there is – sleepovers. We have never had to acknowledge that diabetes is a reason we don’t do sleepovers because we set the expectation so early on.
We did compromise with Middle and agreed to drive him out to the campground to let him hang during the day and bring him home before the boys went to bed. I foresee an argument when it is time to go.
I hate diabetes.
Monday, March 19, 2012
The SUM of all our parts
I was talking to sweetstuff about her feelings regarding wearing her pump again. She had some complaints about it being in the way when she sleeps and being so bulky (I think she needs to see some of the first generation pumps that pwd wore back in the day).
She still has concerns about other students seeing the pump and asking questions or just simply looking at her funny. It’s interesting she doesn’t mind talking about diabetes, what she has to do to manage diabetes, and teaching others about diabetes, but she doesn’t like people she doesn’t know knowing that she has diabetes.
She isn’t shy about performing her award winning copyrighted song (proud mamma has to brag sometimes) in front of a crowd of strangers or the entire grade school she attended and even asks to come with me when I present the Kids Walk to Cure Diabetes to other schools – just so she can perform, but hates strangers looking at her funny when she tests her blood sugar and hates how visible the pump is.
So it was during this conversation with her that I explained that no one is just one thing. We are a SUM of all our parts. Diabetes is part of who she is. It doesn’t have to define her but will always be a part of who she is. Even after there is a cure – having HAD diabetes will still be a part of who she is.
I explained that her experiences both good and bad are a part of her. How she is smart, funny, witty, pretty, stubborn, sarcastic, sassy and loving and how all those things are a part of her. How the fact that she is the oldest of three kids and the only girl is a part of her. How she is half Lebanese is a part of who she is. Her passion for art, music, theatre, and animals are all a part of her. She is the SUM of all her parts.
I invited her to own her diabetes. To be an advocate. To educate others. To love who she is with all her parts – she doesn’t have to love diabetes but to understand it plays a role in who she is.
She seemed better after our tête-à-tête but I know she will still struggle with it. Maybe not again today, or even tomorrow but again. I will hopefully always be able to talk her through a difficult time but as she grows I hope she finds the same support I find in knowing other pwd. There should be a tween twitter – she would like that so much.
What would you give up?
I recently finished the first book in a trilogy by Scott Westerfeld. The first book is “Uglies” which is followed by “Pretties” and then “Specials”. There is a forth book called “Extras” that I haven’t looked into yet so I am not sure if it is truly part of the series.
The Uglies was written in 2005 and is a science fiction novel set in a future dystopian society. In the series the people of the dystopian society start out life as littles living with their parents (middle pretties) but move to the ugly city when they turn 12 and wait to become pretty when they are 16 by way of surgery. After the surgery they move to New Pretty Town where it is non-stop parties and fun. In this society no one has to worry about not being pretty enough, tall enough, skinny enough, too skinny, too tall, etc etc. (Is it ok to have two etc’s or is that redundant?) Another benefit of being pretty is that there is no illness or disease. So why wouldn’t everyone want to be pretty?
CAUTION – possible spoiler ahead if you think you might want to read the series!!!!! You may want to go read the first book and then check back. I am only 100 pages into the second book so I suspect I will be revisiting this topic as I continue to read the series. The series is written for young adults so the books are a quick read and I highly recommend reading them. Nearly as good as the Hunger Games series - thus if you enjoyed the Hunger Games you will enjoy this series.
What if being pretty (and healthy) meant you had to give up something that makes you – You. What if being pretty meant that you lost free will but didn’t even know you lost free will because your mind is altered to make you think you live in utopia all the time?
So here is where I link this to Diabetes if you hadn’t guessed that yet.
What if you could “cure” diabetes and become “pretty” at the same time – what if your kids could? What would you be willing to give up? Would you give up your ability to think clearly and your freewill to be done with diabetes – to end diabetes, cancer, MS, Autism, etc etc? Would it make a difference if you didn’t know you were giving it up? If when you were 16 you simply had an operation that made you “perfect” and allowed you to live in utopia?
Here is where I have a problem. I don’t have diabetes or any other health issues. Of course I would like to be skinnier, have less gray hair, healthier skin, and better coordination but not at the cost of losing my ability to think for myself. (But if I didn’t know that was the cost my answer might be different.) I think I would give anything for my kids not to have diabetes and my mom not to have MS but if I knew what their cost would be, would I encourage them to become “pretty” anyway?
If you are a pwd would you become “pretty” if you knew the cost? What if you didn’t know the cost – would knowing you would be just like everyone else and living in a utopia be enough for you?
I hope to finish the second book “Pretties” soon and I am guessing I will update my thoughts when I finish the second book and the series.
Sunday, March 18, 2012
Woo hoo! (Feeling excited but maybe guilty too)
In early February my dd “sweetstuff” decided she wanted a break from her insulin pump. Trying to convince me she used the idea that she would have better control with shots because she wouldn’t have the freedom to eat whatever/whenever. As a mom (who knows everything) I knew it was more about her feeling different at school and the fact that an insulin pump does not go well with skinny jeans and tight ts. I didn’t call her out on it though. I supported her choice to encourage diabetes ownership.
For the last 5 weeks she managed her diabetes with MDI (multiple daily injections). She has done fairly well overall. Although, she treated the shots like she did her pump – she had no qualms about dosing for snacks in between meals. (So much for better control due to decreased snacking) She purchased an application called “RapidCalc” from the app store. http://www.gilport.com/rapidcalc/index.html
Honestly it was a great application. We programmed it based on her carb ratios, insulin sensitivity factors, and target blood sugars. It basically did everything her pump did except deliver the insulin of course.
The problem was of course the Lantus (long acting basal insulin). She started off with 10 units and hovered in the upper 200s each night. We increased to 11 units and still she was in the mid 200s. We increased to 12 units and that put her in the 60s. We were using the Lantus pen which only dosed in whole units. No problem, we switched to syringes and dosed 11.5 units and she was in the upper 100s low 200s. (We used each dose for 4-5 days prior to making a change)
Using the Lantus worried me – flashbacks to the months post diagnosis for both my kids left me in a constant state of worry. Both of them would be in the 40s for 4-6 weeks after diagnosis at the wee morning checks despite constant reductions in Lantus. (Honeymoon??)
The pump was such a blessing for both of my dear children. Being able to reduce/increase basal as needed made a huge difference in control and allowed for much needed sleep for me. While using Lantus I checked blood glucose multiple times during the night – never allowing myself more than 3 hours of sleep in between checks.
So a few nights ago after reading a post by Kerri S. www.sixuntilme.com regarding a stranger in the airport in which Kerri discussed her pump, my dear Sweetstuff decided she wanted her pump back. It likely also had something to do with me suggesting she might actually have better control using her pump and thus decrease the chances she would develop complications much later in life. (Disclaimer – I know a number of pwd that successfully use MDI and have excellent A1Cs – without the extreme highs or extreme lows but those that I know are also very disciplined in that they eat low carb meals, don’t snack, and exercise daily.) That does not describe my daughter. Like most 12 year olds she loves carbs, hates exercise and loves to snack too.
So that evening she said she wanted her pump back. We had already dosed her Lantus that night so I suggested she sleep on it and think more about it in the morning. I didn’t want to feel as though I coerced her.
The next afternoon she asked if I had figured out her basal programs so she could start the pump again. I actually had not. I had written them down when she gave the pump up – knowing that after 24 hours of being off the pump would reset itself and I would lose the programs. In my lack of organization I had misplaced my note (is that irony? – I have the hardest time understanding what is actually ironic – Alanis Morissette got me all confused with her song)
Late yesterday I found my note. She had asked me a number of times in the interim if I had found it. I replaced the pump battery, programmed it (wishing I had loaded insulin first so the dang thing would quite alerting me to lack of priming and causing me to scroll through the menu options a half dozen times). I loaded insulin and waited until her normal Lantus dose time to invite her to put an infusion set on. She seemed excited – like she had cleaned her room and found an old toy that she had misplaced and forgotten about.
We put on the infusion set and connected the pump. Then we both realized that the last low profile clip we had was broke (those dang things last just over the 3 month warranty mark). We did have a rotating pump clip. (I actually have 4 – we were asked by Animas to try them and report back – I really should do a blog post regarding them.) She was not excited about the rotating clip (reasons to be explained in future blog post). Thus, she chose to wear her spibelt instead. (Love our spibelts. http://spibelt.com/?gclid=CMqIyLb08K4CFQK9tgodVgT3Kg for those that are not familiar with spibelt – they do have diabetic specific belts that have a pass-through hole for insulin tubing.
Sweetstuff’s bedtime check was 168 but she had eaten a fudge bar an hour or so earlier and still had insulin working. Her 3am check was 104 (woot woot) and her morning check was 122. I could likely increase her 3am basal dose by a bit but I’ll wait a few days to be sure.
I feel so much calmer with Sweetstuff back on the pump. I hope she doesn’t regret her decision tomorrow when she returns to school after the last week off (spring break). I also hope she doesn’t resent me and feel coerced back on the pump.
Saturday, March 17, 2012
I’ve never moderated before….diabetes and school - 504s
I am not an overly confident person all of the time. I rarely say “No” if asked to do something even if I am scared that I won’t do it well or have no idea where or how to get started. In the end I normally surprise myself and am successful at the task I was assigned. Still - I have been sitting at my computer much of the day working out exactly what I want to provide to parents while I moderate a lunch time table talk regarding school and diabetes.
I know what I insist on having listed in my kiddos 504 plans. But do I have the right stuff, the best stuff, too much stuff, not enough stuff? I have checked every online reference I could find regarding writing a 504 for a student with diabetes. I have been pleasantly surprised at how much help is available to parents and schools regarding 504s for cwd. I hadn’t thought to look when I was writing my daughters first 504. I knew what a 504 was because of my education background so I just included everything I felt would keep my daughter safe and provide a “normalish” academic setting for her. Turns out I had included 99% of what others online suggest to include. I missed the part where I would insist bus drivers be trained in emergency care (kinda a big thing for me to miss now that I think about it.)
At the lunchtime talk I hope to provide parents with sample 504s. So many parents that I have mentored want a fill in the blank form. I discourage parents from trying to find a fill in the blank form since each child and every school is different. A 504 is an individualized plan – but not to be confused with an IEP (individualized education plan) – that may potentially also be handy if the student has learning difficulties but is not part of the 504 plan. (Sorry digressed)
I will have a list of important 504 items to include – as seen below:
Items to include in student with diabetes 504
(Some items may not apply due to age/understanding of the student – 504 items not limited to this list)
· Blood sugar tests prior to ALL assessments including state exams (specify the target blood glucose levels that are acceptable to begin an assessment – I use 80-180.)
· Unrestricted bathroom use
· Unrestricted access to water
· Snacks permitted outside normal snack time if blood glucose level deems necessary – snacks to be consumed in the classroom setting to reduce missed academic time if blood glucose levels permit.
· Unrestricted access to nurse
· Unrestricted access to testing supplies
· Authorized to keep cell phone on person at all times
· Trained personnel to recognize high and low blood sugar symptoms as well as provide basic and emergency medical care including testing blood sugars and administering insulin and glucagon: teachers, office staff, coaches & bus driver(s)
· Adhere to doctors orders regarding who (child or adult) can administer insulin, count carbohydrates and test blood glucose levels – also note where the above actions should take place (nurse’s office, classroom, cafeteria – the bathroom is NOT acceptable)
· Additional time to complete assignments or tests that were missed due to diabetic issue
· Typed class notes for all instructional time missed due to diabetic issue
· Trained medical adult to attend all field trips if parent cannot attend
· Permission for parent/guardian to attend field trips and ride bus if necessary
· Insuring full participation in all sports and extracurricular activities is allowed and necessary assistance or supervision is provided.
· Eating whenever and wherever is necessary including eating lunch at an appropriate time with enough time to finish eating
· Permitting extra absences for medical appointments and sick days when necessary
· Require the school (nurse) to keep a daily log of blood glucose checks, carbohydrate intake, and insulin bolus amounts – this can be maintained at the school for parent or nurse reference or requested to be sent home daily/weekly/monthly.
· Teacher(s) will provide all substitutes with a folder containing information regarding diabetes, student’s blood glucose testing schedule, symptoms of high and low blood glucose, and emergency procedures
· School nurse will be notified at the start of the school day if a substitute is teaching in the student’s class.
Insert picture of child here
Hello my name is ______________.
I have Type 1 diabetes.
I will go to the nurse a few times during the day to check my blood sugar and receive insulin. In the afternoon I will need to check my blood sugar prior to boarding the bus to go home. If my blood sugar is questionable I may need to eat a snack before getting on the bus. I may also need to use the bathroom more often than other students and consume more water than other students.
If my blood sugar is low I cannot be left alone. If I tell you that I feel low I will need to go to the nurse and a classmate or adult will need to escort me. The other student will not need to wait at the nurse’s office with me. On rare occasions I may be severely low (hypoglycemia) and may become disorientated, if that happens please call the nurse to the classroom immediately and if I am coherent enough give me a juice to drink while waiting for the nurse. Symptoms that might suggest that my blood sugar is very low are: pale skin, glossy eyes, inability to concentrate, shakiness, and dizziness. If you suspect that I am experiencing any of these symptoms please send me to the nurse or call the nurse. If I am low I will need to eat/drink fast acting carbohydrates such as juice or glucose tabs which I keep in the nurse’s office and in the classroom. I will have to stay in the nurse’s office until my blood sugar is at a safe level, usually about 15 minutes. Likewise I might at times have a high blood sugar (hyperglycemia). Symptoms of hyperglycemia are headaches, stomach aches, increased need to use the bathroom, and overall crankiness. In cases of high blood sugars I will need to go to the nurse to receive insulin and test my urine to be sure I do not have dangerous levels of Ketones. I usually will not have to stay in the nurse’s office after receiving insulin.
My blood sugar levels play a large role in my ability to think straight, for this reason it is important I test my blood sugars about 15 minutes before taking any tests or participating in any assessments.
I can eat anything my classmates eat. I do not have a restricted diet as a Type 1 diabetic. I just have to take insulin for all carbohydrates I eat. Thus, if we have special birthday treats or classroom treats outside our normal snack time I will have to take my blood sugar before eating them.
- Blood Sugar testing schedule: (Times are examples and should be adjusted according to your child's schedule)
· 8:30ish – AM Check
· 11:00 – Lunch Check
· 12:50 – Specials (PE, Music, Theater Arts, Art) check
· 2:35ish – PM Check
· If you have any question you can ask me, call the nurse or call my mom.
· Mom: _______________________ Phone #_______________________
· Dad: ________________________ Phone # ______________________
Also I plan to provide what I call the “Odds and Ends” – suggestions that will help keep the child safe and foster a good relationship between the teacher(s) and parent(s). Seen Below:
Odds and Ends
· Be sure each teacher/classroom has fast acting carbohydrates available. I put a couple juice boxes and a tube of frosting in a ziplock bag for each teacher to keep handy.
· Provide an alarm clock for students that stay in a homeroom class for the majority of the school day. I provide an old iPhone that allows for multiple alarms. Alarms are set for various times throughout the school day that alert my son that it is time to test his blood sugar.
· Provide spare supplies to the nurse.
o Extra vial of test strips
o Extra meter
o Extra syringes
o Ketone strips
o Vial of insulin
o Batteries for pump and meter
o Extra infusion set if using pump
· Provide snacks to nurse to keep in his/her office to treat lows or provide a carb cushion prior to PE or other strenuous activity
· Provide a substitute folder for all teachers including: art, music, theatre arts, and PE.
If your reading this and you have experience either attending school with diabetes or have a child with diabetes that attends public school and you have additional suggestions regarding what information I could/should share please consider leaving a comment. I have learned so much from those who have gone before me – I am always learning and would love the opportunity to share all that I can with others walking the same path.
Thursday, March 8, 2012
Price of Membership Sucks - but the members rule!
I still can't get a minute on the laptop it seems except for late at night when my brain is fried. I had a different post in mind but then remembered I wanted to send an email to the monther of a newly diagnosed 2 yr old. I thought I would share my email.
I still can't get a minute on the laptop it seems except for late at night when my brain is fried. I had a different post in mind but then remembered I wanted to send an email to the monther of a newly diagnosed 2 yr old. I thought I would share my email.
Hi J. My name is Christina. I volunteer with the JDRF and was sent your contact information by A H who works for the JDRF. I have three children. Two of my children have Type 1. My youngest child was diagnosed (dxd) on Feb 7 of 2007 when he was only 2. It was the scariest time in my life. Nothing can prepare a parent for news like a diabetes diagnosis. However, as you can see we survived. My son, now nearly 8 (just celebrated his 5 year Dday anniversary last month) is thriving, happy, super smart and the most amazing child I know along with his two older siblings. My daughter who is also my oldest child was dxd on April 19, 2009 – two years after my youngest was dxd. She was 9. She is 12 now and beyond wonderful.
I had left you a voice mail but realized that I likely left said voice mail the very day you were taking your dear son (ds) home from the hospital. I remember when we left the Children’s hospital after my son’s diagnosis. Well – I remember that it was a blur. I remember going straight to the pharmacy to fill prescriptions, then everything is truly a blur. I remember fighting with the hospital staff telling them the day before that I couldn’t leave yet. They had wanted us to check out the day before. There was no way I was prepared to leave that safety bubble. They let us stay another night but nearly packed our bags for us the next day.
I know it may seem like it can’t possibly get better but it will. Right now you are likely a bit over whelmed with carb counting, shots, calculations (damn those math teachers telling us that we would need math one day), late nights, middle of the night checks (of course you are likely up feeding an infant too). You are likely sleep deprived, scared, angry and sad. I feel safe saying all this because I was there and I know so many others that have been there too and the story is ALWAYS the same. It will get easier. The basal doses (lantus) will level out, you will be able to carb count every plate in a busy restaurant, you will be able to recognize lows and highs with a corner glance at your ds. You will get to sleep again.
You are not alone and will never have to be alone. There are more of us out here than you can imagine (sad but true). There is a whole community online that will support you, help you, and encourage you. If you are interested in the diabetes online community (DOC) here are some helpful places to start:
Children with Diabetes is a fantastic organization that has online forums where parents share ideas, stories, questions, and support. (I love CWD and I read posts frequently. However, with any online group I suggest caution at first. Don’t share too much info first off. I read posts long before I posted simply because like any organization there are some bullies who think they know everything and don’t play nice with those who disagree with them. It is unfortunate but I felt I should give you the heads up. - Certainly not a reason to avoid the CWD forums - they have saved my butt a number of times with questions and answers, humor, knowledge, and support. I also made some of whom I consider my very closest D friends in the forums.) I am Beermargarhitamom in the cwd forums – long story regarding the username.
CWD also hosts a conference in Orlando in early July. It is called Friends for Life. I happened on it just after my ds was dxd and we were lucky enough to be in a financial position that we could attend. It was beyond wonderful. It there is any chance you would be able to attend this summer I would strongly suggest it.
The DOC on twitter is also amazing. If you are on twitter search #dsma to get started. They have lots of great tweets with links to wonderful stories, advice, education, and support. I am momof2t1s on twitter.
There are a great number of blogs written by parents of children with diabetes and adults with diabetes (diagnosed as children). Below are a few of my most favorites – I don’t get to read them every day but I try. I am a smarter more sane person because of the people behind these blogs.
Maybe I have over whelmed you with information. If so I am sorry. When my ds was diagnosed I had no one. Our local JDRF was not what it is today when we joined the D club. If it hadn’t been for me stumbling on the CWD website and conference I don’t know where I would be in this journey. It has taken me 5 years to be as involved as I am and I am not nearly as involved as others. I will be here to support you and your family to my best ability. I am available almost always. Text, call or email me if you want to talk, have a question I might be able to answer, want to scream, or want to laugh.
I am sorry you have joined the club. The price of membership sucks but the members are phenomenal.
Warmest wishes – huge hugs,
Friday, March 2, 2012
Sometimes we get broken
Last Saturday (nearly a week ago now) I was in the beginning stages of a nervous breakdown. Having been cleaning the house all day including steam cleaning the floor only for my dd to let my dogs in with wet feet to muddy up the once clean floor I was at my wits end. Thus when my dh sat down in the family room to much his favorite snack (sunflower seeds in the shell) I lost it. To him if must have appeared as if my head was rotating and I was projecting pea soup from my mouth while screaming at him to get the damn sun flower seeds out of the family room. (Those damn shells find their way into every crack in the couch and under every piece of furniture). The thing is I was sleep deprived.
Going to bed at midnight after checking the kids blood sugars, waking up at 2am and again at 4am to check blood sugars (this is new it used to only be 3am - but with my dd going back on shots I am not sure how the lantus will affect her so I get up more often), then waking up at 5:30 to make coffee, lunches and get the kids up for school takes a huge toll on the human body.
Doctors recommend 8-10 hours of sleep for adults. Who the heck are they kidding? Even parents without cwd don't usually get that amount of sleep. Most my non D friends get around 6 hours.
Anyway - My body was broken. My hormones were completely out of whack. My left eye twitched uncontrollably and to most others I must have looked like a meth addict. Beginning Sat and continuing through most of Wednesday I would spontaneously cry. Yes I had a hard few days regardless of the sleep deprivation (bad endo visit, bad news for non-diabetic child, money woes) but without the sleep deprivation I might have handled the bad news differently. I still feel bad for the nurse practitioner that saw us that Monday when I just started crying when she told me the news about my non-diabetic boy.
(stopped and saved at this point nearly a month ago - read on)
Years ago when my ds was diagnosed I read about diabetes burnout and also attended a breakout session at the Children with Diabetes Friends of Life Conference by Dr. Richard Rubin called "Diabetes Overwhelmus". I heard people share stories of how the constant vigilance can get to be too much and so breakdowns happen. I've never been one of those "it could never happen to me" kind of people, instead I've always been more of a "I totally have that - or - a meteor IS going to fall from the sky and kill me" kind of person, thus I took the advice seriously. I took breaks, asked for help when I could, accepted help if offered, read books, tried to meet other parents (although I was not privy to the huge DOC yet). I also didn't try to hide my frustrations with D from my kids - I just made sure they knew it was D I was frustrated with - NOT them. I wanted them to understand that it is ok to get down, angry, frustrated, confused, etc. I feel like I had been doing a good job - up until the first week of Feb (which btw is when I started this post - I am just now - nearly a month later - getting back to it - and that is ok. If I allowed myself to get angry at Myself for not being a better blogger than the whole point of writing a blog to release stress (and share inspiration) would be lost). (Also - it is totally acceptable to have multiple parentheses inside other parenthesis - I know this because Kerri from www.sixuntilme.com said it was ok - or at least does it frequently and she is the blog queen.)
So here I am nearly an entire month later. Am I better? Yes. A bit. I am no longer so overwhelmed.
· My hubby stepped in and took over the 3am blood sugar checks (yes it has been 5 years since our first was dxd so one might say “it is about freaking time” but in all fairness I never asked and often said no when he offered – I’m a bit of a control freak).
· My daughters Lantus is leveling out – for now – that may change next week – and Lord help us when she gets all hormonal.
· My dear husband’s brother (and his wife plus 2 boys) came and left and they did not mention the dust on the ceiling fans.
· I finished up a number of projects I had been working on.
· I had a garage sale that was over 2 years in the making (by making I mean that I was tossing things in my garage in hopes of having a garage sale one day for a little over two years – the pile of crud took up an entire side of the garage and was 3 feet deep).
· My mom is here visiting. J
Life gets crazy and I can’t always keep up with it all. I am really good at faking it and find it interesting that other parents of cwd that are either local friends or FB friends will message me, or call me, or show up at my door asking me how I hold it all together. I usually laugh, invite them for coffee and spill the beans.
I don’t always have it together. I cry, I yell, I want to punch things and sometimes do punch things. I ask WHY often. Then I pick up the pieces and go on.
As far as “why” – there doesn’t have to be a “why” – it can just be as it is. OR maybe there is a WHY and it is because me and my kids needed to come before the next family that will be confused, angry, sad, etc and who will need to know they are not alone.
Maybe it is because although I may not be great at writing and I seriously suck at math and I am embarrassed to admit that when my dh told me he was from Lebanon when we met I didn’t know where Lebanon was – I can still teach. I can speak in front of any number of people without breaking a sweat and I want to make a difference. I want to leave this world a better place.