It was one of the worst diabetes days in a long, long time. We got home late that night, and put the kids to bed. It dawned on me that amidst dealing with all the BG craziness, I never even ate dinner. Fred, being the awesome husband he is, went out to get me some chinese food.
I sat down for what seemed like the first time all day, cried, and then ate my food. At the end of my meal, I cracked open my fortune cookie and was greeted by this decree of discernment:
Apparently, the cookie is trying to tell me something.
I'm so, so, so sorry that you're having such a terrible time.
ReplyDeleteAs usual, I have no advice but lots of hugs...
It has to get better!
Listen to the cookie. Hugs!
ReplyDeleteCookie is right. If it doesn't get better you will make it get better. There has to be a reason. Thoughts are; could be it does take time for body to adjust to pump therapy (I suspect this could be true; no evidence); could be you have a bad box of pods (it has happened to some in the past). Solutions, there are many, from untethered method to huge increases in insulin accross the board. Don't be afraid to change everything (but do so on a night you are sure you have backup and can stay up). I feel so bad that you are not getting enough feedback from your diabetes team. Have you ever thought about hiring an on-line consultant? Gary Scheiner at integratediabetes.com is great. You can fax him the numbers and call him; he will brainstorm with you. Not too expensive as you can use him on a three month, six month, yearly or even consult by consult basis. Another set of eyes might help. He helped us when our CDE left our diabetes center almost immediately after our pump start (replacement nurse was trained for adult Type 2 care and it was a while before they got new CDE for pediatric side). Good luck! I would get in touch with Gary if things do not improve in a week or two.
ReplyDeleteI appreciate your blog so much.Thx for sharing. I was recently diagnosed with type 1 and it is so helpful to share..thx.
ReplyDeleteit must be difficult with the new peice of equipment in the mix, honestly thats the part that freaks me the most is the learning and trouble shooting. we had a night last night on MDI where i was up every 2-3 hours testing and bolusing to no avail..he was high until 8am and came down nicely in time for breakfast. its a fickle disease to start with. i really hope the cookie is right, and things get easier. you deserve some plain sailing !
ReplyDeleteugh Jo...so wish i could be there to give you a hug. I promise you that it will get better though. You are one of the strongest Momma's there is and this moment in time will pass. Hang in there!! xoxo
ReplyDeleteCrazy, isn't it? Our experience was similar in starting out on the pump. Just when I was getting the hang of shots, everything went to sh*t on the pump. I was wondering why in the hell we were even doing it. It takes a few weeks to make the right adjustments. One thing that I wanted to share was those constant highs remind me of one of our initial problems- with the type of insertion site. We have a different pump, so I don't know how much relates to the pod, but our first insertion site was a straight-in metal thing- like a thumbtack. Ben would be sky high within an hour or two after each insertion. His body was probably reacting with some inflammation there. Had much better luck with an angle-in soft cannula. You can see more about it at type1tot. Good luck. It will be worth it.
ReplyDeleteOh Joanne...so sorry you and Elise are experiencing this. While on the Pod we had the extreme highs after dinner but on MDI we have extreme lows...go figure! I hope that things start to even out soon. Trust in the cookie!xoxo
ReplyDeleteBeen there done that. Good luck. I hate those days. Keep up the good fight.
ReplyDeleteWe are not on a pump yet, but when I spoke to my son's endo about one at our last appt, she said many ppl compare going on tne pump like diagnosis all over. Sounds like she might be right, freaks me out. BUT I do think its a great way to go and do think you are awesome and being completely human and that's very important. Hang in there. I know our time is coming as soon as he's on enough insulin!
ReplyDeleteOh noooo...every day I've been wondering how the numbers are going.....Im sure you must wonder why the hell you are putting yourselves through this when you had everything so "perfected" before :( -Sigh- Im so sad for you. I know your heart is broken down with each high number, and I know you must want to smash the damn thing by now...but the cookie must be right!! ((HUGS))
ReplyDeleteThe cookie has spoken.
ReplyDeleteI swear I almost threw our pump out the window in the beginning.
Once I figured out that trying a new infusion site would fix our dilemma, I was ALL IN.
500's are horrible for a mommy to see.
Praying for you guys, and hoping things settle soon.
The cookie tells the truth. It is.
ReplyDeleteI understand your frustration - we have all been there and whoever says they haven't, well, they just lyin'. If you need any of us, give us a call, you shouldn't have to do this alone. And as frustrating as it is, I never assume it's the pod that's not working. Maybe you get a faulty one here and there, but they scream when they don't work. Maybe give her a shot to bring her down, then let the pump do the job?
I second Laura, listen to the cookie. Get down from the ledge :0) It WILL get better. I gotta send you my phone number so you can call me when things get bad!!!!
what an awesome "fortune" - and a smart cookie!
ReplyDeleteWe had some highs last week. Of course it was my daughters bday so didn't know if it was hormones or pump. Well after changing pump sites and changing/using insulin from 2 different vials from the fridge I decided to get another vial of insulin from the pharmacy. Yep that did the trick. I think our insulin in the refrigerator went bad we had good numbers from the new vial of insulin fresh from the pharmacy. I hate all the Diabetes trial & errors. :(
ReplyDeleteLOOK TO THE COOKIE, JERRY.
ReplyDeletejeez i hope things are going more smoothly now. i wish i had more words to offer than that!