The unveiling

The internet was designed with people with ME in mind. I live to vent. I NEED to rant. The focus of my frustration and ire is USUALLY Type One Diabetes, though I do have other irritants. I was diagnosed in 1974, but never really found an OUTLET for my rants until until I moved to NYC in 1997.  When I got there, I had no friends or support system, and there wasn't even a live insulin support group. But, thanks to a Type One friend named Buddy, I found Insulin-pumpers.org, which was one of the very FIRST Diabetes Online Communities - when I joined, there were fewer than 200 members, and the format was very old school, bulletin board style postings and responses. But there it was... a place to ask questions, share experiences, compare notes, rant with abandon and find all sorts of solace, whether it be about my latest run in with Nurse Ratchet, or the current retinopathy woe. Insulin-pumpers was the first to fill this very definite need, and gave me a place  for my voice. Better than  anonymous AOL chat rooms, I found penpals, advisers, listeners, and eventually true and lasting friends. They even gave me a nickname, Sara Smarty Pants, hence the SSP.

Ever since I started posting (voraciously, I might add) there, I've kept a logs of all my posts, thinking someday I would go "to the village newspaper and gather into a book the" words I wrote. Back then, the only books of note were John Walsh's Pumping Insulin (of which I have a first edition) and the Barbara Davis Center's Dr. Chase's Pink Panther book, Understanding Diabetes, (which I got when I was a patient there in the early 80s). But I never did, and over the years, others have  published awesome, insightful books, so why would the world need ANOTHER book about diabetes, so I left it in the blog. I never shared these postings beyond Insulin Pumpers, because I just thought no one would care.

But NOW, after attending the #Masterlab seminar at Friends for Life in Orlando this past summer, thanks to the Diabetes Hands Foundation, and being inspired to share my thoughts and words and baloney by You Can Do This, Kerri , Kim, Scott, A Sweet Life, Cherise, Kelly, and Alecia, I've decided to put it out there and see if anyone even notices. Just a little at a time, since I need to spell check it, and fix some punctuation. OK, alot of punctuation. I hate rules, particularly those having to do with grammar, punctuation and diabetes, as you will see if you read any of this. And I have a full time job. I mean in addition to my diabetes. And my dog, Lulu.  So, this will come out a few posts at a time...And we will see if it has a place in the world. For me, it is kind of a retrospective of where I was, and where I am now. It has been really interesting reading this stuff, at least to me, to see how far things have come.

So...welcome to the Borg, as we used to refer to getting started on an insulin pump. "Resistance is futile. You have been assimilated."

Going Low.... a RANT

Hey ya'll...I'm going to rant for a minute against mankind in general...bear with me, or just skip now.

It is great for our friends and family to "understand" our moods and
crankiness and irritability, and just chalk it up to our "affliction. However, MOST of them don't understand what is required...ie give me a snack NOW dammit.  And what really drives me nuts is when I am JUST moody, cranky or irritable and it has NOTHING to do with diabetes.  I might just have had a s*****y day - we ARE allowed to have those, aren't we?  Or did I miss that rule when my BS was low??

It used to drive me NUTS when  my mom or dad would ask me, "is your sugar ok?" when I was having a "mood."  Granted, a lot of those moods in the 70s and early 80s were probably caused by wildly swing sugars cuz peeing in a cup to test my sugar was not a thing I did regularly or with any pleasure, BUT STILLL!!!  

And they still use it...Now when I check (7-9 times a day - Profile one touch), I always ANNOUNCE, "hey, I'm normal." when I am around them - just so they KNOW, I am just in a MOOD and not having a "sugar attack" or whatever they chose to call it - DESPITE all the education on the subject that have received.

And on another subject, just how many times do I have to explain the laser and retinopathy thing to my loved ones - I have had laser literally DOZENS of times and every time they ask the same questions, the same gossip floats around my family, as if they have nothing better to talk about than Sara and her diabetUS (that is how they insist on pronouncing it...)

Back to others being aware of our "condition."  For good or bad, I am glad
shows like ER have had characters with diabetes - but the pregnant girl on ER who was too stupid to even draw up her own shot???!  please - that is not an image I would like people to have...or the story that ran last year about a doctor having a low during a surgery or something.  Heck, chaarcters pull out cell phones, or baby wipes etc. all the time.  Why not have one whip out a meter, poke his or her finger and test - as an actor it would be a challenge to keep going - but WE manage to do it...I have done it on the subway, on the corner, in restaurants, where ever I needed to do it.  I have gotten out of bed during intimate moments and checked my blood.  I am expert at doing it driving down the highway and can do it in the dark now thanks to the little lite on my MM507.  99% of the people I come in contact with these days would have NO Clue what was happening or what to
do - in fact most of them probably wouldn't even notice the Medic Alert
bracelet I have worn for the last ???years...Living in NYC, if I was passed
out somewhere, they'd steal it and my wallet, and later, going though it,
maybe realize I had diabetes..like it mattered.  Then I'd get hauled off for
vagrancy and having no ID, no one would know what to do.  Just another
incentive to try and keep myself healthy, I guess...

I do not hide my pump.  If I am dressed up and have no pockets, I can clip it to my undergarments, but despite what others say, it still shows on me.  Normally  I wear it on my waistband, where most people think it is a beeper with an antennae, but if they ask...I whip it out...most people are curious and intrigued...THEY HAVE BEEN AROUND for almost 20 years haven't they?  Everyone knows what chemo therapy is, everyone knows what AZT is for, most people can pronouce artherosclerosis....I cna't even spell it...so why don't they know how diabetes works.  HELLO WE ARE A BUTT LOAD OF PEOPLE.  Why have we been pushed behind the door like this???

Both my niece (4.5) and nephew (7) are interested in my "toys - Sam since he was 3 years old.  Both have tested my sugars and their own.  Both have watched me do shots and set up the pump.  Sam asked me one day if some guy walking by had on a pump too...it was just a beeper - so if a 7 year old can be aware, ANYONE can!

As for sleeping - since I am single, I sleep alone..most of the time, and my pump sleeps right next to me - it is like my arm, I always know where it is, I got tangled up with it at first, but haven't in a long while.  Even in the
middle of the night when I get up to go to the bathroom or get a drink or
test I can just put my hand out...and there it is - right where I left it. On those rare occassions when I am not alone, it has never FREAKED anyone out to be attached - one has been ripped out, but I must say at the time, I felt no pain.  And thanks to the tender, it is OH so simple to just unhook and be FREEEEEEEEEE.

OK.  I am done.  My bs just in case you want to know is 114.  My drug of
choice today is caffeine.

Thanks for listening.  

"Do or do not...there is no try".....................Yoda

Complications

Regarding how pumping and better control can improve or reduce complications:  My Ha1cs have improved vastly, and my kidneys are holding stable (whether this is due to the study drug, or the daily capoten or the pump, I don't really know).  As far I as know, I don't have or didn't have, any other of the fun things we can look forward to (I have had diabetes almost 25 years).  What has not improved is my eyes.  I went on the pump in Feb 93 and had immediate results in my A1cs, but my eye continued to bleed.  My doctors advised me not to go for 80-100, but tather aim for 100 -150, since really tight control tends to make the problem worse.  They also said that usually eye problems got worse, then started to improve after some time......I'M STILL WAITING.  

I had another round of laser last week when I was in Dallas (since I trust these NY doctors <g>.)  I had a bleed 5 days later!  I can just be sleeping (with my head elevated as ALWAYS) and wake up and have a nice black lace effect across my eye.  THIS IS THE FRUSTRATING PART!!!!!!!!  I've been "good" (isn't that not politically correct?  good vs. bad).  They don't have Bluebell here in NY and Ben and Jerry's is a RARE, expensive treat!

So WTF am I supposed to do?

EWW what IS that?

Have you ever looked up, after pulling your pump out of your underwear to deliver a bolus, only to find some nosy  curious onlooker giving you an odd look? How do you respond? I usually have a little smart ass remark like:

a)  a beeper with an antenea
b)  a slow gin drip
c)  portable pancreas

...but then, I explain what it is.  Although, now that I think about it...it would be great to have a slow, yet constant, basal drip of prozac or valium in these days and times, doncha think?

SSP

Greetings Fellow Borg Members

My name is Sara, I am 34 and have had diabetes for 24 years. I was assimilated into the Borg in February  1994. I started with the Minimed 506, but upgraded this year to the 507, which I love. I take 30-35 units a day, with a ratio of anywhere between 12 and 16 grams of CHO to unit of insulin - depends on time of day, stress level, etc.  I am fond of saying, I will go back to pumping when they peel this sucker from my cold dead hands!

I have had a vitrectomy and cataract in the left eye and frequent lasers in the right. Currently, I still have so-called "good" vision, but don't come up on my left side because there is a heck of a blind spot. I have some beginning kidney problems and take capoten. I have been participating in a national study of a new kidney medicine for a year and a half. So far, they seem to be holding steady. My last ha1c was 6.9 which was very nice compared to the 13s+ I had prior to the pump.

I currently live in NYC, which is quite the culture shock. I hope by writing this and sharing it with the world, I can find some much needed support from others with diabetes. I don't have anyone here to talk to and curiously NYC doesn't have a pump support group