Tuesday, November 30, 2010

Calling All D Mamas, Papas, and PWD's: WE NEED ADVICE!

Well... today has finally arrived!  The LAST DAY of November NaBloPoMo!

I truly didn't know if I could do it.... but I did.  A post every.single.day in November!

Do you hear that?  That's the sound of all the bloggers to the right exhaling!

It actually was a lot of fun and a lot less stressful than I thought it would be - even including the ER visit, bad sites, flat tires, strep and all the other nonsense we've dealt with this month!

I'll do it again... someday!

For my last November '10 NaBloPoMo post, I'm writing about an idea I got from a friend and fellow D Mama on Facebook.



Over the weekend, she asked for advice for a family dealing with a very new Type 1 diagnosis.  


By the time I got to her post, there were already many, many people who had responded.  And all left such wonderful words of wisdom.

And it made me think....  

It was such a wonderful blessing to read that.  Such a nice reminder...

And we ALL need that from time to time.  Because we all go through slumps.  We all go through hard times.  


It doesn't matter if you've been living with D for one minute, one hour, one day, one year, one decade, or more.

It's still nice.


And it gave me an idea....



What a wonderful resource to put on my blog....  The wise words of Mamas and Papas and PWD's...  A place you could always go to refresh and replenish your weary soul.


I'll compile your wisdom and make it into a tab that will always be available above. 

So - let's hear it!  I need YOU to make this work and be successful.

Leave me a comment and tell me:

What advice would you give to a newly dx'd family or person?

What do you wish you knew then that you know now?

You can leave your name or go by Anonymous.  You can leave your dx date or not...
 

I'll go first...


I wish I had known that the road ahead would not be a straight line - but a road full of dips and curves.  You don't magically go from point A to point B... You take a few steps forward and then a step back... but just keep walking.  Or crawling.  Or being carried - FORWARD.


I would say that it's ok to feel whatever you feel.  You don't have to put on a brave front or be "Miss Mary Sunshine".


Know that you are not alone.  There is a wonderful community online to support you - when you're happy, sad, angry or up in the middle of the night.


A nurse told us at Dx, "She's going to be fine.  She's just going to take a little more care than before."


Well, that was quite possibly the understatement of the  year.  BUT - she's right.  You will be fine.  It IS more care.  But you can do it.  You may not think you can - but you can.  

We've all been there.  Not one of us ever thought we'd ever have to stick a needle into our child's flesh.  Certainly not every dang day, many times a day.  We know you may hold back tears as you do it.  We know your heart breaks a little every time.  We know.  We get it.  


I could keep going... but I won't.


Because it's YOUR TURN!


Tell me what you think.


No, scratch that.  Tell the person or the family sitting in the hospital RIGHT NOW.  Right this very minute.  Hearing that T1D is now in their life.  Forever.  It's not going away.  There's no pill.  Holding their baby.  Scared.  Confused.  Sad.  Overwhelmed.  Angry.  Frightened. 

Tell them from your heart. 

(I have no idea who these people are... Especially not the kinda scary guy - or guys - in the back.  I found the pic online - and the message was perfect... so....just focus on the words, ok?  Thanks!)

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12 comments:

  1. I would say invest in a scale, a couple sets of measuring cups, and a really great alarm clock.

    Allow yourself time to grieve for the "normal" you have lost. It is okay to be sad and mad at the same time.

    Also know that this road while not what you would have choosen is driveable. If you have a partner in the journey to copilot with you it will be easier. It is hard but together you can do anything, but you must choose to be in it together.
    J- Dx 2/13/2010 at 11 months old

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  2. My advice to a newly dx'd family is that although you may feel so much pain for the one who has been dx'd it never defines who they are and it doesn't stop them from becoming whatever they want to be. There may be a lot more attention and care that's necessary but its all worth it when they find their passions and become strong people, mentally, because of the strength you showed them.

    The thing I know now, that I wished I knew back then is that there is a great deal of people in the Diabetic Online Community (DOC) who are almost ALWAYS there to help you. In the few months I have been here, I have felt so welcomed and am so grateful to meet these extraordinary people who are in someway or another going through the same things I am.

    I'm Naomi, Dx 8/15/94 at 26 months.

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  3. Boy, that's kind of tough...I think it'd go a little like this:
    *you're not alone. Find a diabetes support group that meets in person or really get connected online. If you do go onto the Children with Diabetes website beware that some people on there are very opinionated and rather gruff, but mean well.
    *Don't believe that the nurse, dietician, or even doctor have all the answers. They are a part of the team and so are you...bring all your ideas, research, thoughts, questions and especially OBSERVATIONS to every meeting.
    * Be weary of those that seem to not know how current technologies, insulins, and diets effect current treatment...their advice is to be taken with a grain of salt.
    *You're not alone in the process of grieving over a child with a lifelong medical condition, although you may not know others with CWD you may know somebody whose child has been diagnosed with other medical conditions. Allow yourself to talk with them about how life altering it has become for you and your entire family. Talk, talk, talk.
    *Meri, from Our Diabetic Life, gave me the best advice through one of her post about how wonderful it is when we just do something - check and find a low, then treat it - GOOD JOB! Check and find a high, then treat it - another BRAVO! Focus on what you are doing not the pitfalls for diabetes doesn't always make sense but you can see where you can make a difference in each number.
    I think that's it..but I feel like there are a million things I coudl say.
    I'm Sarah, my son was dx November 2009 at 19 months.

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  4. I would tell newly diagnosed people to find themselves other parents who are living with a Type 1 kiddo and get some support for this long journey.
    I would also tell them what my Nana told me all the time - It will all be well. It will all be well again. Faith that it will will get you through.
    Oh and the words of our wonderful CDE - 'It's only a number, it just tells you what to do. No such thing as a good or bad number.'

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  5. Allow your child to be a KID. They can still do EVERYTHING they did before as long as you are equipped with "d" supplies and plenty of sugar sources.

    The diagnosis of any chronic condition affects the WHOLE family. Siblings, your marriage, your extended family will feel some strain here and there...know this is "normal". Awareness of this statement will help you head off more serious issues down the road.

    AND, yes, it is frustrating when everyone thinks you should be "fine" 2 weeks after diagnosis. You will feel alone. You will feel misunderstood. You will most likely feel isolated. Know we are all here for you and we are walking the "walk" and we are talking the "talk" ... we "get" you. You are NOT alone.

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  6. What a wonderful idea and congrats for making it through this month!!

    I would like to say to you today that you are only human and that this is a good thing because a child needs their parents more then they need a pancreas. However because you are only human you will make mistakes, you will doubt your ability, you will question every decision you make and this is normal. You will have triumphs and you will have down falls. Hold on to the good days and let go of the bad ones. Wherever you are and whatever your doing know that you are not alone.
    Cara dx T1 Feb 09 at age 3

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  7. I wish I had been told that diabetes is not a cookie cutter disease, and one size does not fit all. That is especially important if your child is diagnosed so young, like Elise was at 12 months. It took me a few months to learn that I could not treat a low with 15g of carbs like I was told to. Usually 5g would do the trick.

    I wish I knew to trust my gut more. That I know my child better than the voice on the phone who I'm calling for help does.

    Get involved. Reach out into the community. Find support somewhere. You can't do this on your own. Technically, you can, but this disease will suck the life out of you if you let it. You need a place to go so you can recharge. The DOC is my place and I love it here.

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  8. Phil 4:13 "I can do everything through Him who gives me strength."

    Don't chase numbers. It's a losing game. It's not about how "perfect" those numbers are, it's about finding out what they are (when you need to) and treating accordingly. Over thinking it will strain everything! One step at a time.

    As time goes on you'll find that the Dr. and their team do know a lot that will help, but ultimately you are the final say....you know your child better than a report or statistic...don't be afraid to change things if you feel it's better for your child and you have the right information to do so. Just know that there's a HUGE learning curve involved.

    Find out what the maximum prescription fill is for a single co-pay and make sure the Dr. writes the prescription for that amount with refills. It will save frustration and money. Example.....I have Kaiser and the plan I have allows a 3 month supply under one co-payment. So I get 5 boxes of syringes for $12. And 2 Novolg Cartridge boxes (10 total) for $30.

    Your child can have every food they've always had.....in moderation now. There's no right or wrong foods, and naturally the healthier ANYONE eats, the healthier they are. That's a pretty good rule of thumb. (I would suggest to look for alternatives to regular soda though....ie., diet, propel, kool-aid with splenda, crystal light.)

    Your life isn't over.....it's just more interesting! :)

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  9. Two main pieces of advice: (1) injected insulin does not match food intake well, for us, at least. Find out the duration of insulin action shortly after dx. But realize that does not mean you don't have to check BS until four hours after eating. Check two hours after eating if your duration is long. Watching your child drop to the floor one hour after eating with the proper ICR (thank goodness she was home); we were unprepared for that. (2) Regardless of what your endo or Nurse CDE tells you, check at night. Midnight and 2am or 3am check. (3) get a pedi endo that will support you in care, i.e., an endo who is willing to fight the insurance companies to override their minimum on testing strips and do the work to get you a preauthorization for more strips. (3) Same for pumps or cgms; you want an endo who will work with you. (4) Carefully chart and observe any exercise and give Ex-carbs or reduced temp basals and don't forget to give ex-carbs reduced temp basals the night and for 12 hours to 24 hours following a lot of exercise. I have found "a lot" of exercise really isn't very much. Just a little exercise can have a drasting blood-glucose lowering effect. Of course weigh all fruit, cereal and sweets on the Salter; weigh dry pasta on the Salter. I often follow carb counts on backs of packages for most other carbs; many might have to weigh everything.

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  10. There ARE people out there who "get it". I would would tell them not to wait ten months to reach out for support. There is amazing support around here... don't be afraid of it.

    Don't pay attention to the opinions of others. They have them and they WILL share, but 99% of the time they have NO IDEA what they are talking about. Don't let it get to you.

    Don't be afraid of the pump. I know the thought of hooking a machine to your child is a scary thing, but it IS okay and it DOES make things easier.

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  11. Advice I would give to a newly dx family-
    Diabetes is hard, painful and frustrating. These are the hardest times, in the beginning. I know every day I would find myself asking “why me?” however, now I say “why not me?” you should look at diabetes as a blessing. Your child was given diabetes because god knew they were strong enough to handle it. Especially in the beginning, the best thing to do is give the D support. Sometimes family support isn’t even enough. If they are old enough, I highly recommend going to diabetes summer camp. I went at only a few months dx and it changed my outlook on diabetes.
    Something I wish I had known then would be that diabetes has no effect on who you are. You will always be the same bubbly, happy, energetic person you were before you had diabetes. And most importantly, smile.
    - Haley
    16 years old
    Diabetic for 5 years

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  12. Jamie; daughter dx at age 3 (2005)December 2, 2010 at 1:01 AM

    I always tell newly diagnosed families that life will be normal again, the definition just changes! I also tell them to respond to the number, don't react to it. You can't always figure out why it is so high or so low. My husband and I always just shake our heads after we have spent 10 minutes discussing why she had such a crazy number. Sometimes it is just Diabetes- it does'nt make sense! The most important thing is to keep life as normal as possibe. I took my daughter back to preschool the week after she was diagnosed. It might of only been for 45 minutes a day (and I was sitting in the parking lot), but it was a sense of normalcy for her. I really wanted to yank her out of preschool and never let her out of my sight, but then I came to my senses and knew she still needed to live her life and I'm glad I did. She is a wonderful, well rounded 8 year old that loves life and I'm not going to take that away from her!!!!

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