Desperation, aggrevation, and other random thoughts.
Hi Everyone,
I know this forum is supposed to be for discussion and not
necessarily for venting and crying, but I don’t have anywhere else to
turn. Nobody seems to understand the frustration I am feeling these
days in regards to diabetes and this pump. I don’t mean to be a
crybaby, but I think after 10 months reality has finally slapped me
across the face.
I HATE DIABETES!!!!!!!!!!!!!!!!!!!! I hate it, hate it, hate it. I
hate that my kid has it, I hate that some of your kids have it, I
hate that anyone has it. This disease sucks. And this whole pump
business, what a joke. After one month, her average blood sugar is a
whopping 183. I can’t wait to see her A1C in September.
I feel like the world’s worst mother, I can’t make my baby better,
and neither can this pump. It seems I was promised a big bag of
sunshine and good control, and I haven’t seen either. I know it
takes some time, but I have no more patience for this. I cry
constantly when I take her sugar, yes, I cry when I see the numbers.
And temporary basals and increasing by micro-units doesn’t seem to be
helping anyone.
To answer the obvious question, yes I have talked to the pump trainer
about this, who just keeps telling me “it takes time”, or “you will
see results” or “it’s a bad time of year with the heat and her
increased appetite”. I lay in bed at night with a vision of her
internal organs just swimming in a sea of sugar. I want to take
matters into my own hands and just make the changes on my own, but
the endo and the pump specialist have pretty much put the fear of God
into me, that I should never make changes on my own. I know her
insulin to carb ratio is way off, and no one listens, “we’ll just
adjust her basal”, ITS NOT WORKING. My daughter should not have
blood sugar of 325 at 11pm at night. Yet 10 minutes in the swimming
pool will bring her down into the 20’s. Yes, that was a delightful
afternoon when I actually reached for the Glucagon. Sadly that’s the
only number under 100 she’s had in about 10 days.
Rhonda, I know Sydney went pumping recently, am I going crazy, is it
supposed to be like this? I am out of my mind frustrated, and sick,
and angry, and mad, and I want to shake the next person who
says, “just give it some time”. I look at my baby and cry, I just
want her better, or at least in control and I can’t find the
answers. I think I have officially hit a wall. Again, I’m sorry for
being so negative, but I don’t know what to do. I tell my parents my
frustration, and they are sympathetic but I don’t know that they
understand either. My friends don’t get it, my boyfriend doesn’t get
it, and I know they want to, but they just don’t. I am looking for a
in-person support group to deal with these feelings, and have sought
some professional help just to deal with all that’s been going on, I
can’t be like this in front of my daughter.
Stephanie
May 3rd, 2007 at 9:32 pm
Stephanie,
I’ve been on my pump for less than 3 months now. I had the same problems
in the beginning, always running high. My NP/CDE never wanted to change
anything. She said it would be fine to run high for a few months to try to
regain my hypo awareness. She may have thought being at 260 all the time
was fine, but I didn’t. I’d call or e-mail to complain and she’d finally
say to make one change. Finally, I decided to just not even talk about it
with her and began to change things on my own. I’ve changed basal rates,
basal times, how long the insulin lasts etc. I did this based on the 10 or
so BG readings I’ve been taking every single day, based on what I’ve been
eating, based on what my numbers do at 2, 3, 4 etc. hours after eating. My
last visit with her was in June, and my next is at the end of this
month. I know she won’t be pleased, but I’m much happier. The past couple
of weeks I’ve been having lows, which are in NO WAY as severe as anything I
had on injections. So, I’m going to tweak my daytime basals again, or
maybe raise a carb:insulin ratio.
I think some trainers/nurses/CDEs are control freaks. They want to control
our control! I think mine might take it personally when I tell her that
HER choices aren’t working for ME. You’re with your daughter every day and
you’re the one who sees exactly what she eats & when. As long as you have
the knowledge, I think you should be the one applying it. I’d just be
careful not to change more than one thing at a time, make conservative
changes and see how each one works for several days before changing it
again. I have made a change and the next day my results were great, but
the next few days they weren’t.
As far as air bubbles go, I always have a hard time getting them all out of
the reservoir. I was told that tiny “champagne” bubbles are nothing to
worry about, and that is true. I’m using a MiniMed pump, and sometimes I
see air in the tubing. At first I panicked about it but now unless it’s
huge I don’t worry. I use the longer tubing (42 or 43 inch) and when I
prime, it only takes about 12-13 units of insulin to fill. That means in
order to displace just one unit of insulin, you’d need an air bubble about
3″ long. A 1/4″ bubble means nothing to me, but with someone who is very
sensitive to insulin, it could be a problem. If I see any substantial air
bubbles in the tubing, I’ll watch them for a bit and wait until they get
closer to the infusion site. I then disconnect at the site and use the
Manual Prime feature on my MiniMed to push them out, and reconnect. The
manual prime works because it won’t add anything to the total daily dose of
insulin. I used to just bolus until the bubbles were expelled (while
disconnected of course!) but then the pump would count it all as active
insulin and add it to my total, screwing me up. Using the prime gets
around that.
My dawn phenomenon also doesn’t happen in the middle of the night or early
dawn hours. It pretty much starts once I get up.
–
Liz
May 5th, 2007 at 2:34 am
Hi, everyone!
I have had the pump for just over a month. There are times I think I have a handle on it, and then, “poof,” my sugars go weird. My doc wants my A1C under 7, but I really think that is unreasonable in my case. I am happy with something between a 7 and an 8.
Has anyone noticed a difference between the carbs in, say, bread, and the carbs in berries? When I eat fruit, my sugars skyrocket. I know, fruit is our friend. But, it has a dark side. I have found myself using words my father taught me ( a retired sailor of 30 years) when I take my 2 hour after BG, and it is 274 after eating a cupful of blueberries. But, a Jersey Mike’s sub sandwich, with bun and all, leaves me less than 100.
Any suggestions?
As you can see, Stephanie, you are not alone, by any means. I have tossed the fretful approach to high numbers, and have replaced it with (please excuse the language), “Where the ‘h’ did THAT come from? And just bolus to get it back in the range I want. I cannot use a perfectionist approach, or I would go nuts.
Best wishes to you, Stephanie. We DO understand the frustration.
Joan