Our D-history:

My daughter, *Rosie, was five years old when she was diagnosed on September 19, 2008, with Type I Diabetes. We started out on MDI, but in October 2010 we switched to a pump. We also added a Dexcom CGM in May of 2011. In February 2014 we changed to the Medtronic Enlite system- a pump and CGM all in one.

*Rosie is not her real name... I let her pick her own pseudonym for the blog!

Saturday, September 17, 2011

Amy's 30 {Invisible Illness Week as a D-Mom}

This week is National Chronic Invisible Illness week and I've enjoyed reading this meme around the DOC.  I love how everyone's answers are a little different, and a little bit the same. 

1. The illness we live with is: My daughter's Type 1 Diabetes.   And she's being closely monitored for another auto-immune condition that has to do with hormones and growing too fast... we don't even know the name of it yet. 

2. My daughter was diagnosed with it in the year: 2008

3. But they had symptoms since: about two months before diagnoses... of course we only realized that in hindsight

4. The biggest adjustment I’ve had to make is: Living without sleep. 

5. Most people assume: that Type I is just like Type II and I am simply an overly protective mom.

6. The hardest part about mornings are: Well, first of all, just because they are mornings... and I am not a morning person by any stretch of the imagination.   But seriously, I wake up and immediately pray before my feet hit the floor that Rosie has been OK since whatever time I last checked her... that could be anywhere from an hour to four hours previously.  Mornings scare me because that's when she has had both of her seizures... both times I discovered her having one when I went to wake her for the day.  ::shudder::
7. My favorite medical TV show is: House.  LOVE him.  He says the things the rest of us wish we could!

8. A gadget I couldn’t live without is: Rosie's meter and insulin pump.  (OK, I cheated, those are two seperate things but they work SO well together... they're her d-management combo!)  Although these days her Dexcom is certainly ranking right up there.   

9. The hardest part about nights are:  Sleep, or lack thereof.  I wake up three to six times a night to check on Rosie.  Some nights, like last night, I'm also awakened by numerous alarms on her Dexcom.  It's hard to get back to sleep, and then when I do, it seems like just moments before the next alarm. 

10. Each day I take pills &  vitamins: I don't take any daily, neither does Rosie.   I have vitamins and supplements that I probably should be taking daily, but nothing prescribed.
11. Regarding alternative treatments I: am interested, but only in legitimate science.  Please keep stories of how my child can be cured by algae or tea to yourself    I do use some herbal medicines for myself, though.

12. If I had to choose between an invisible illness or visible I would choose:  I guess invisible.  Since I work in a nursing home and take residents out regularly, I know all too well the stares that some of them receive in public because of a disablity or illness.  My daughter has the option to hide her diabetes most of the time if she prefers to do so.

13. Regarding working and career: I work part-time, and I have ever since my {preemie} children were born.  I am blessed with an understanding boss who doesn't get upset when I call off on a bad d-day, and she allows me to keep my cell phone on me so the school can reach me during the day.

14. People would be surprised to know: that I wasn't always this outspoken, mama-bear kind of person.  I used to be very shy.  Dealing with doctors and nurses in the NICU with both of my preemie babies helped me break out of that, and by the time D came along, I had no qualms at all about really speaking up and obtaining the care/ help/ information we need.

15. The hardest thing to accept about my new reality has been: That I can't fix it.  I think I've accepted that most of the time, but periodically I find myself emotional when something comes up again.

16. Something I never thought I could do with this illness that I did was:  allow my daughter to attend slumber parties.  I'm not saying it's been easy, but we've done it three times now, and each time has been a little easier than the first one.   

17. The commercials about their illness: I'm stealing Meri's answer here: "Are usually geared towards 70 year old type 2 diabetics."

18. Something I really miss doing since they were diagnosed is: carefree, unplanned stops to grab a milkshake or another treat without having to stop and calculate if she can have it right now, how long since the last meal, how much insulin on board, how many carbs, etc.

19. It was really hard to have to give up:  Not to sound like a broken record, but SLEEP.   (I feel selfish just typing that.... of course I'll give up my sleep every day for the rest of my life to keep my child safe.) That's about the only thing I have truly given up... everything else was just modified a bit, and life moved on.

20. A new hobby I have taken up since their diagnosis is:  The DOC!  I blogged before diabetes,  but since diagnosis I've turned to the DOC on Twitter, in forums, and most recently, by starting this blog. 
21. If I could have one day of feeling normal again I would: Drop my daughter off at a slumber party and not even ask what she ate the next morning.... let alone come back three times during the night, train the adults in charge, and sit by the phone a nervous wreck.  

22. My daughter's illness has taught me:  That she is amazing, resilient, and strong.  She handles the challenges that D throws her without skipping a beat.   I think she was blessed with a personality that makes her able to do this.

23. Want to know a secret? One thing people say that gets under my skin is:  Ohhhh.... the too-common statements that people make about how they don't their kid have candy so they won't get diabetes, or even worse, jokes/comments about how my kid must have eaten too much sugar and that's how she got diabetes.  That grates on my very last nerve and I REALLY have to bite my tongue, because most of the time people truly are ignorant of the facts.

24. But I love it when people: Ask questions and really want to know the answers.  It touches me when someone takes the time to learn about what we're dealing with.

25. My favorite motto, scripture, quote that gets me through tough times is:  I have two:
  • Plato's quote that you shouldn't judge people because everyone is fighting a {hidden} battle.  I LOVE this quote, and I need reminded of it myself some days.  I have no idea what makes the clerk at the gas station grumpy, but she just might be fighting an invisible illness, caring for a dying relative, struggling to pay bills, or a myriad of other invisible battles.  I try to keep this in mind when I deal with difficult people.
  •  I firmly believe that everything in life happens for a reason and as it's meant to be (Ecclesiastes 3:1)... although I often find that God alone knows that reason. This belief grounds me in much of my life, including diabetes, though I won't claim to know or understand what the purpose could be.   I do find the little things to be proof that there must be some sort of ultimate plan, though.  For example: what are the chances that we would build a house directly across the street from a family whose child was diagnosed two years after Rosie?  I believe that happened for a good reason, so that we can support each other. 
26. When someone is diagnosed I’d like to tell them:  You will never, ever control this beast 100%, so don't beat yourself up trying.

27. Something that has surprised me about living with an illness is:  The insensitive things people say... whether intentional or not. I've worked in health care for 16+ years, so I don't know why it still suprises me, but it does. I think I have a thinner skin with diabetes because it involves my child. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  Take over d-care so I could sleep for hours on end. 

29. I’m involved with Invisible Illness Week because: A bunch of my favorite d-bloggers did this meme: Meri did it,, Reyna did it , Kerri did it, , and now I am doing it.

30. The fact that you read this list makes me feel:  Understood.  There's nothing better than feeling like you are not alone in fighting your particular battles in life!

Tuesday, September 13, 2011

It's Nearly Walk Time

Our local JDRF walk will be held in about two weeks.   Once again, The Sugar Sharks will be there, walking and enjoying the beautiful day.   Last year was our first walk, and I remember standing in the middle of the crowd at one point being in awe that ALL of these people are personally touched by Type I Diabetes. 

This year Rosie chose a bright purple for our t-shirts... I can't wait to see how well some of the men on our team like them!  They should be glad we vetoed the bright pink.  I told her this is the only time she can get away with something like that-- any other time the guys would probably not wear it, but for her and the JDRF walk, they will wear anything.  :)

We've raised a little less money so far this year than last year, and I'm ok with that.  Last year, being our first walk, we had a lot of people jumping in to donate.  This year, very few people have responded to our emails and reminders.  I think with so many of our friends and family hurting in the current economy, we're likely to have mostly moral support and prayers this time around.  And that's ok, too. 

What about you?  Are you walking?  Are you finding fundraising harder this year?
Do I seem familiar? :) This blog is new, but I've been around the DOC for a while, and I've been blogging about other topics for years. I'm AmyMCGS pretty much everywhere online- CWD, Twitter, etc.

Saturday, September 3, 2011

Quarterly appointment= down .5!

Rosie and I went in yesterday for her quarterly endo appointment & lab work.    Much to my surprise, Rosie's A1C had dropped .5 from last time, making it the lowest it's ever been... whoo hoo!   I really felt like we'd been battling a lot of night time highs lately, so I was surprised that it had dropped at all, let alone that much.

As I was still recovering from that shock, our endo  actually complimented me on how she likes what we're doing with temp basals... the compliments were another surprise.  (We love our endo, but usually wind up with a list of things to do, not compliments, LOL!)   She is a big supporter of the temp basal settings, and was pleased that I've been "experimenting" a bit more with them.  She didn't want to change anything on her permanent basal settings right now because she feels like we are doing well with using the temp basals as needed.   Edited to add: I do not mean to sound like I know what I'm doing, because I don't, LOL!   I've just been making efforts to experiment more and the doctor was pleased with that. I will share later this week what we've been trying.

Rosie has recently been having trouble keeping her Dexcom sensor on all week... by the end of the week she is picking at the adhesive and saying it's bothering her.  Our Dr. said this means that she's sensitive to the adhesives and she suggested trying a Benedryl spray before we apply the sensor, and any time during the week that we need it. I didn't even know that Benedryl came in a spray form, but we're going to try it.  (Joanne @ Death of a Pancreas recently posted about a similar problem with the Dex causing a rash on her daughter's skin... check out this post and the comments if you're having these kinds of issues.  There's also a link there to a post by Lorraine from This is Caleb with a bunch of ideas.)

All in all, it was a great appointment... I love it when we get to feel like we're on top of things D-wise.   I know it won't last, as D likes to throw us curveballs, but once in a while, it's nice to feel like we are actually the ones in control of this monster. 
Do I seem familiar? :) This blog is new, but I've been around the DOC for a while, and I've been blogging about other topics for years. I'm AmyMCGS pretty much everywhere online- CWD, Twitter, etc.