Little victories…

I remember when humalog came out. I was so used to waking up high and it literally taking all day to come down. Around dinner time I’d level out, just long enough to go back to bed and rise again… those dastardly teenage hormones. My nurse, a type 1er herself, raved to me about this new insulin called humalog. I was given strict warnings about how and when to take it, and not to take it until I see the food I was going to eat because it worked SO quickly. Bla bla bla… I’d heard about miracle things before (yes, I even tried the air pressure “no needles” thing) so I was less than excited.

The morning after my appointment I woke up around 270. I thought I’d give the new stuff a test drive. It still looked like regular to me, still smelled like insulin… I took a few units and waited. One hour and 17 minutes later I was 135, and floored. I could not believe it actually worked!! I ran around the house telling anyone with ears how amazing it was to me that it was only 10:30am and I was in range! A few smiling head nods later from my mom and brother I was still in awe. It actually did what it said it would do.

When I went on lantus the result was not quite as energetic, but I was happy to give away my NPH thinking that the new stuff had to be better. Control wise it was, but man oh man, the sting from that shot always hurt. It often times was so bad it would take my breath away.

Being on the pump, I feel like that teenage girl again… Every time I check and am in range I think, “Hot damn, it does what they said it would.” Despire my long standing dislike of the pump, I am loving every second.

I don’t miss those lantus shots, not one tini-tiny bit!

It takes 2 to get a thing done right....

My husband is wonderful. For a plethora of reasons, which is, of course, why I married him. He has jumped into the diabetes world head first and is doing really well in learning and accepting all of the “fun” that comes with loving someone with very stubborn, set in her ways type 1 diabetes. (yes, I am a stubborn, old school, we did it this way in 1990 so that’s how I am going to do it, don’t try and pawn off those short needle syringes on me, I use the long ones type of girl.) He knows that I hated the pump. He knows that I went on the pump for us, so I can work on my A1c and when we’re ready we can have kids. He has been very supportive in anyway that he can be while we are adjusting to me being on the pump.

Ryan leaves for work about an hour and a half before me. One of the things that he does is wakes me when he leaves to check blood sugar. (I’ve been focusing on getting my overnight basal set.) I upped my basal last night and after my obligatory check at 3 am clocked in at 78, I was interested to see what I was in the am. This morning he nudged me and handed over my flash, we both watch the screen process the test and up pops 500.

500? I rubbed my half awake eyes and think I’m adding a 0 to that.

“Does that say 50?”

‘Um, no honey, that says five hundred”
I didn’t even know my meter could read that high.

“Did you pull out the pump in the middle of the night?” he asks.
Nope, it looks ok.

“Where are those pee strip things, isn’t that the next step? Then take some insulin in a shot” He rattles off the steps as if he is Elliot P. Joslin himself.

“Actually he says, clean off your finger and check again, just to be sure”

I dipped my hand in the water by the bed side table, oh so sanitary, I know. And recheck.

“132, that’s more like it” he says proudly.

Then, staring at the vat-o-glucose tabs with the top screwed on wrong, we realize what happened. My treatment at 3 am was 3 “tutti-frutti” glucose tabs and the residue was still on my fingers.

While I could rattle off all of the amazing trips and restaurants Ryan and I have been to, and all of the wonderful things has done for me, it’s the supportive moments in the wee hours of the morning, where I am slowly but surely letting him in to help with my diabetes care, that make me know for sure. He is a keeper.

The OC

I volunteered this weekend at the Barton Center for their annual road race. I was happy to lend my time cheering on runners and my husband loved helping in the kitchen and making coffee for the spectators. While I was there I was talking to a friend that admitted that she found my blog (HI) and we had a conversation about why we were drawn to reading blogs in the OC.

It’s something that was wondering about myself just last week. What is it about people chronicling their everyday on the internet. What draws me to read about PWD and parents of kids with diabetes day after day. Feeling the highs and lows of blood sugars and life, mostly with perfect strangers. Admittedly I know some of the terrific bloggers out there, but the majority of your are just beings behind a computer.

What we came up with mirrors my firm belief in diabetes camps and support groups. Simply enough, it proves that we are not alone in living with diabetes. The enormity of that short statement is hard to explain to someone that does not understand all of the ramifications that having a chronic illness/condition has on your life. Like the doctor that said it should take about 10 minutes a day to manage your diabetes because that's how long a few checks and shots take.

Despite my knowing better, I have measured the success of a day based on what my one touch said. I have cried when my A1c was higher than I anticipated, even though I knew I had not done everything I could to manage my health. I have cursed my efforts of being in tight control when it meant that I was low walking into an important business meeting and couldn’t focus my eyes on the presentation I was delivering. I knew I should not eat something/go for seconds and did it anyway. I wondered how much I should save for retirement and will I ever get to use that money for anything other than prescriptions.

Every time I have an ache or pain in my legs I wonder, do they hurt because they hurt or is it neuropathy. The bittersweet feeling of saying, I’ve had diabetes for almost 25 years and don’t have any complications, yet. I worry about being a burden on my husband and future children if those complications do arise. Waiting and wondering about the unknown terror that this disease can have on my life, while living life and all of the ups and downs life brings everyone.

The beauty of the OC is that you “get it”. Without even knowing me, you understand because you have been there. You don’t try to ignore my worries about my future and my health, you do not brush away my concerns with a well intended “Don’t worry, you’ll be fine.”

Having a closet full of syringes and infusion sets is normal to you. You’ve spilled your bag and syringes have come flying out much to the horror of passers by. You’ve eaten sugar packets and single serve jelly containers at restaurants when your food has not come quick enough. You wonder what life will bring you or your children, you think of cures and then come back to reality. This disease is only tackled one way, one test, one day, one A1c at a time. Anything more than that would be too overwhelming to think of, although, we’ve all gone there in our heads.

So, on behalf of myself and the anonymous readers out there, I thank you. Thank you for putting your anger and frustration and happiness and accomplishments out there. I can guarantee, that with each frustrated or encouraging post, at least one reader has nodded with agreement, or truly felt your emotions.

When bad days come, and no one seems to understand, we are lucky that we, the OC, have each other. And that is worth all it all.

update

In my typical luck with the pump, I had quite the experience Tuesday switching to insulin.

My husband and I got into Logan airport at midnight. We were in Hilton Head visiting my family (had a great time and learned how to cook my dad’s famous shrimp)

Being the over planners we are, we stayed in a hotel in Boston because my pump start was at 9 am downtown, and by the time we got home to my little suburb it would be have been 1:30 and we’d have to heave at 6:30 to avoid all of the traffic going that way. So the perfect stage was set… my husband was even coming with me to the appointment so he could learn all he could.

We get to Joslin about 3 minutes late… not too bad considering the construction that we needed to go through… I missed breakfast, but was running a bit high from not having any Lantus on board, so I had a few PB crackers and planned on testing out the new pump with some breakfast afterward. We checked in and then we waited.. and waited…. And waited… and waited…. At 10, I asked the receptionist if nurse so and so was in, she looked up at me like I was disturbing her from something and paged the nurse…So I waited…Mayhem ensued which kept the waiting room quite entertained, and long story short, hubbie had to take a cab at 11:30 to his office to make an important meeting (which I refused to let him miss because of this).

I was not seen until 12:30. I was mad, really mad. I understand that people get sick, I do….but to leave me waiting there for 3 hours?! And then I had to go looking for someone? And then supervisor so and so said, oh we’ll just have to reschedule you, I'm sorry about this… um, I had no Lantus in my system and was NOT taking small shots throughout the day. I actually said “Hi, I have this thing called diabetes, have ya heard of it??” Eventually a nurse saw me on her lunch break… Grumble, grumble…

But, the good news is that I like it. I really like it.

I’ve done 39 blood sugar checks in 48 hours… and have avoided any major highs or lows… while overnights are not right still, I made it through the work day not moving more than 40 points all day…. game on…

Thanks for all of your support!!

Dance of Joy

My husband travels for work a lot. Generally no where exciting, touring aging manufacturing plants and talking with banks. The only excitement is when I get the nightly check in calls detailing what enticing meal he ate (last night was "fall off the bone ribs"- a personal favorite of mine) and the occasional "cheezy trinkets from afar," generally purchased in the airport on the way home. His travel does not generally bother me, and I quite enjoy a night or two at home to catch up on my DVR'd shows.

Last night, though, I was a bit nervous. I had to change my pump for the first time, alone.
When I was on the pump about 10 years ago, I distinctly remember one instance of changing my pump alone. I was in my dorm room watching Oprah. I anxiously grabbed the soft set and started to jam it in. This was before they had any sort of inserter, and I was a slow shot giver. Two really bad combinations. Oprah started mumbling and it seemed like she was yelling down a hall...just keep pushing, caren, almost done... The room started looking brighter than it had just a few seconds prior....breath in, breath out, breath in....is it warm in here?

Next thing I knew, I woke up on the floor. I had passed out from having to change that stupid thing. And the worst part is that I didn't get the site in, so I had to do it again. I went off the pump a few months later.

Skip forward to last night. I had the pump all ready, was standing in my kitchen cleaning the site with my alcohol swabs. In my head I was reminding myself, I choose to use the pump to be a healthier person. This is my choice....I am big into self encouragement speeches.... I take the inserter thing and boom, it's in. Wait, I didn't feel a thing, it cant be in... I check again..yup it's in. It didn't hurt, it didn't hurt.... can that be right? I must have done something wrong. 5 minutes go by... still not hurting... and then starts the embarrassing, thank God no one is home happy dance.... I CAN do this, it is MY choice and it's going to be awesome.


Next step, insulin. Bring it on.

Mutiny!

I often feel that I am just the spirit in this body, and it really would not matter who the body was, I would be essentially the same. It’s a bit more voodoo/ sci-fi than I generally tend to believe, but it’s true. All in all, I have been quite happy with this body. (minus the auto-immune, shall we say, issues) However, recently I am afraid that the vessel may be rebelling. Indeed, we have a mutiny on our hands.
My saline trial is going just fine. I am changing the infusion sets with minimal hassle and pain. After about 30 minutes the sting from the needle goes away and I am all set for a few more days. I am figuring out which pants work best with the pump and where I can hide it when I am out and about. My body seems to not mind the pump. Hooray! The problem is that I also have to continue to take my shots until next Tuesday. I did not think that this could possibly be an issue, having taken 4-6 shots a day for 24 years. But I think this old ship has had enough of the double life.

I have never bruised so much from shots in my life. It does not seem to matter, leg, butt, belly… bruise, bruise, bruise….and I am not talking little bruises. Big, black, ugly ones. Sigh.

The final straw for me happened this weekend. I went out with a girlfriend for dinner and to see a band. The restaurant/bar was about an hour from my house. After trying on several outfits to make sure the pump was well out of site. I packed my bag, remembering to bring my bedtime Lantus, just incase I was out too late, and I jumped in the car (I was SO proud of the fact that I brought my Lantus with me). I really was feeling like I finally had a good grip on my health.

We met, sat down and started chatting. I could chat with this particular girlfriend for days and still have things to talk about. After a margarita and some chips, I reach for my humalog. It was almost as soon as my arm started to go for my purse that I knew. It was going to be a long reach! My humalog was sitting at home, on my kitchen table. Damn. Damn Damn. I felt like I did in 5th grade when I forgot about a homework assignment, naked and vulnerable, and not anything that could easily fix the situation.

I had ordered a low carb dinner anyway so we ate. Then gave up, what I thought to be the perfect seats to watch the band, and we went on a quest for humalog. 5 pharmacies later, we found it. I convinced them to ignore the “prescription required” on the box, telling the 18 year old behind the counter that yes, it was novalog that you need a script for and not this... I paid my, gsap, $85 for the bottle and we headed back. (I knew that I could get R if all else failed.)

Of course we lost our seats, and had to pay a cover to get back into the same bar that we were just in. But the part that irks me the most, is that my diabetes managed to change our plans. I hate that. A lot. My friend was great, and we had fun trying to find a CVS that had an open pharmacy in a strange town, but for that hour I was different. “Stop your plans and do nothing till you do this” different. That’s that hardest part of diabetes for me. I generally blend in with the crowd, my trials and tribulations of having this disease were my own issue, and until very recently (learning to share those burdens with my husband), no one other than myself saw all of the work that makes it look easy to others.

It amazes me that 24 years later, I am still learning and adjusting to this disease. And yes, the largest bruise to date was a result from my new, very expensive bottle of humalog.

I am ready to get this pump show on the road!

Pump Factoid for the Day

When getting out of the shower in the morning. Reconnect to the pump, then put your underpants on. This way, you’re less likely to rip out the whole thing when using the bathroom later in the day.


(p.s. underpants is one of my favorite words)

Queen of Saline

I started my saline trial on Tuesday. In a very bright conference room at Joslin. After listening to the gentle buzz of the florescent lights hanging above, day dreaming about life with Bonnie and where she will take me, I finally faced my fear. The very patient nurse encouraged me as I said “one, two, three, bombs away” (Bombs away? It makes me sound like I am at war with something. Perhaps I am. I’ll come back to that someday.)

And then I was connected. No panic attack, no sweaty forehead, the room didn’t spin, and I felt fine. The site was not in the expected belly region, she had me put it in my upper/hip/butt area. The nurse affectionately called it my “future saddlebag area.” I chatted with her for a bit, and then went to go home. As I was getting in my car, I was very aware of where the site was, should I try and not sit on it? Will the lap belt rub against it? And then I made my mistake, I tried to slide in to the car not hitting my hip. I got home and tried to sit carefully on the couch as my husband asked me a series of questions. Even later that night, laying on the couch, I made sure to turn just a bit, to make sure that my site was ok. Surprisingly enough I didn’t sleep well. I tossed and turned and the remembered the infusion site and turned again. I bounced around from a couch and 2 beds before I finally settled down and got to sleep.

For the record, the site it’s self never hurt. The sting that I felt taking out the needle paled in comparison to my nightly Lantus shots. I woke up in the morning just not feeling right. I threw on my jeans and headed to work. My whole tush area was sore. I thought for sure that it was the infusion site. Wondered if it was too late to return this contraption.

And then I remembered what I had done.

I my haste to be sure not to hurt the infusion site, I ended up pulling some of the muscles around the site. And advil and a bit of ben*gay later, and I feel fine.

That’s what always gets me about having diabetes. The testing and shots are one thing. But the worry and unknown causes my brain to go places it doesn’t need to go is what is the hardest part of this condition to me. I did it to myself. In all my fear about the pump, the one thing that bothers me the most is the pain I caused myself.

Figures.