You Pump?

Have you ever heard of something or someone hiding in plain sight? It's amazing to me, how close you can be to something and not know it.

For the past (almost) 2 years, I have searched for people who understand all the new and complex details of my life as a PWD. I have found that community through my little laptop's window, in the DOC. I have gained so much more than I could have ever imagined, from this family full of strangers. It is a comfort and understanding that led me to CWD's Friends For Life, where I met some of the most amazing PWDs in person.

It was almost a week of feeling normal and most importantly understood. My parents couldn't fathom me wanting to spend my vacation at a conference focused entirely on a disease. What they didn't understand was the knowledge and support that feels like a second home.

As July approaches, I am gearing up to go back, and I am getting more excited with every day. In some ways, it is just a relief to get away from the stress of everyday life, including a second round of pay cuts, and fear about what my future holds. More importantly though, it is the camaraderie and community of real people that I crave. I long for it more often than I care to admit.

When it comes to my diabetes, in everyday life, I feel very alone. Only my very close friends know I'm diabetic, and that is pretty much the extent of their involvement. Don't misunderstand, if I'm asking for help, they are the first to come and answer my call. They will get me what ever I ask for, but if I couldn't ask, I would doubt anyone would know what to do. I don't think the diabetes would even cross their mind. I hate asking for help, or even appearing weak enough to need it. I'm classically OK. Sure, I may be bleeding profusely after falling on a pair of scissors, but just give me a minute to walk it off...I'm OK (true story).

So after keeping my D on the DL, I was surprised when a co worker and friend approached me today with the question, "Do you pump?." My look of complete astonishment must have shown in my inability to respond.
After a minute, she points to my green Ping, clipped to my pants.
"yes" is all I could get out.

Now, usually my pump is hiding somewhere on my person. The ability to bolus remotely was a HUGE selling point for my pump. In other words, I forgot that it was clipped out in plain sight. She starts asking me about our insurance benefits for pumps/supplies, since her daughter is type 1.

Now, I know this woman well. I've had lots of discussions about her daughter that's in college. About her ex-husband and their issues. How in all this time, had I not known that small piece of information. And WHY did that small conversation starter, make me feel connected in a strange new way.

Turns out that her daughter was on a Minimed with her husbands insurance, but since he's not paying her bills, she having problems with paying and getting supplies. She's also now on CGMS since, a few months ago, a friend found her passed out in her dorm room, from an almost deadly low. Her roommate was out of town, and she could not remember almost 24 hours from when she woke up in the hospital. FYI, it was an out of warranty insulin pump MALFUNCTION that caused the low. REALLY SCARY!

Regardless of the scary and terrible story, I walked away from our conversation hopeful. She knows. She understands. Her daughter is coming down next week, and I will get to meet her, and show her my pump as I explain our current benefits to my friend (she's thinking about switching her over to her insurance, so she could get a new pump.) Right now, I am left wondering who else may share this bond, and what other things, do I and others close to me, not know about one another. I would certainly love to find out.

Dear Endo...

Dear Endo,
Yet again, I walk through your double doors, expecting to hear angels singing, while feeling the white, warm light, shining down on my face. It is fitting after all, since I have place you on this pedestal, that sits high enough to be in the heavens. No other doctor, compares to you. You are the only one who can see the true me, the sick me, even though that is not how I feel or look.

I approach, awaiting my judgment day. I get ready to stand before your nurses, with high blood pressure and nerves, hoping you will, sometime soon, grace me with your presence.

I prepare, plan and wait for this moment, each time that I come. Sometimes, just thinking about this moment scares me into submission, and other times, it leads me to rebel.

I am anxious, and eager to hear what you have to say. Each time, I hope that your answers will dramatically change my life in a profound way. Secretly, I know you have the cure to that sick side, that I hide. With each question I ask, I am chipping away slowly to the perfect treatment, or permanent solution that you hold somewhere in that room, that has the damn scale.

Instead, I am brought back down to reality. There is no singing. The only white light is coming from obscenely fluorescent lights. The nurses are dripping in hospital blue and sporting crocs instead of halos. My blood pressure and BG are the only thing rising to the heavens at this moment.

My judgment comes with a new, in house, A1c machine that immediately sucked, after it delivered a number of 11.4 (note to self.. in heaven, it wouldn't have moved from 5.8)

And then you enter my room, slightly shorter than I remember, with a speed and demeanor that said you weren't taking questions. You balk at me, offer no answers, and then request to babysit me and my basals by having me fax my logs daily. You finally entertain my question about the problem behind me, and can tell me little. When I press you about the lipoatrophy, you get annoyed, leave the room and do a consult next door. Your loud voices, carry to my room, and I now know, none of you have actually seen it in practice. After a little referencing, you return with a anecdote of, "It's just a random side effect of the insulin. Let me know if it happens again and we'll change your insulin again"

I leave now realizing (once again) that you are not a god. I care, and know more about MY health than anyone - even you. This disease is mine, and I am responsible for it completely.

I leave today feeling so grateful for all the info and support from my DOC community, that far surpass your "team" that treat my disease. I wonder why I need to see you so often, but I've decided, that you can write my scripts and order my tests. period.

Someone needs to call an ambulance!

OK, so lately things have been better. No new dents or craters, and I've found the adjustment to Apidra pretty seamless. And then came today, where the world started turning in the opposite direction, and everything became somewhat surreal.

A little back story about work. We have been changing a lot in reference to a new and poorly defined work flow. My boss is pretty incompetent (and I'm being extremely nice).

Lately my usually cheery demeanor has been, well less cheery out of sheer frustration. On top of this, our workplace is making us jump through all kinds of medical wellness hoops to get the full insurance subsidy from the company (a whole other future post.)We are having to get mandatory blood drawn (AT WORK) for tests, along with BMI and blood pressure tests. The goal is to find health problems early.

Today, was my day to be singled out.

I started with the usual routine, with the exception of having to fast for my blood tests in the afternoon. I'm not sure if my tolerance was low because I was food deprived or I was actually low, but I lost my buffer. You know, the one that keeps you from saying what you are REALLY thinking. One of my close friends, had repeatedly said I was in "rare form". So of course, this would be the day my boss would pull me into a conference room to "talk". He said he was concerned, not about my work, but he thought he was seeing that I had reservations about our new system. He asked me to share my concerns, because he genuinely wanted feedback.

I kept thinking, TODAY?!? Your asking me today?. I quietly attempted to pull myself back, and I said, "What I think really isn't important." Please let this go!! Please! Of course he didn't and so it came out. everything. Every grievance, every assault on his management skills, everything thing he was doing wrong and how it affected the group as a whole. I couldn't believe I was speaking unbuffered. Who was I? I didn't even recognize myself.

Now USUALLY, my boss gets quiet and ends the conversation as soon as he doesn't approve of the direction. Instead, he listened and talked it out AND APOLOGIZED A LOT!!!! For over an hour, he listened to my plight and conceded. Who was he? He certainly did not resemble my boss of over 10 years. We worked a lot of things out and walked out actually laughing. I still have trouble believing it, and I am surprised at how much better I feel to have voiced all that resentment (although I still feel like HR might call me).

So, about 30 minutes later, I was off for my tests. I filled out my form (which doesn't have a place to put diabetic), and got my blood work, via finger stick, done. It was officially completed with a large bandaid I have to laugh at. I mean, if I did that after every pin prick, I would look pretty silly.

I waited for my name to be called, and when I approached, she was praising my cholesterol, BP and BMI. And then I heard it. "this can't be right. let me check that...you said your fasting?" "Yes" I replied. Pacing back and forth from the machines, I hear her say, " this can't be right. Someone look at this...Is the machine working? It is? Someone needs to call an ambulance. QUICKLY!!! Her blood sugar is 410!"

After being waived off several times, she finally heard me AFTER she announce to THE ENTIRE ROOM my blood sugar. "I have diabetes!" I was trying not to alert everyone of my health condition, but I had to practically yell to get her attention.

Her reaction was so anticlimactic. "Oh, well nevermind. So, here are your results, do you have any questions?" Yeah, what happened to the privacy act... So I ducked my head, and retrieved my bags and went home (it was now after quitting time).I was still in shock on my drive home. I know stress can raise BG numbers, but 410? I rage bolused and drove home, and I am now around 240 and tired. I plan on taking a hot bath, and going to bed early tonight. Maybe tomorrow, the world will return to normal, or I will wake up finding out it was just a dream

Butt...I don't understand!

I've often thought that I had gremlins hiding away in my house. Lurking near my dryer, waiting for that one sock they can hijack out of a clean load of laundry. Or they are sneaking in my purse to steal my keys, and place them in the oddest of locations.

This is how I like to explain things to myself, when things are missing or lost. It is certainly not the forgetful nature of my now 30 year old self. Most of the time, things show back up before a true crisis can't commence.

Butt...
I'm missing something I'm VERY attached to. I noticed it, night before last while attempting to do a set change, and I am completely horrified over it.

I've only been on a pump since November, and I've only been using insulin for less than 2 years. In that time, I have been warned about only one side effect to the insulin. Hypoglycemia. It seemed a small price to pay for my life, therefore I accepted it. So, I was really surprised to see that when I went to take out my old site, sitting at the top of my butt/hip was a HUGE DENT, where I used to have muscle and fat. It's like the insulin just dissolved everything within a half dollar size around the cannula. Literally skin over bone, and quite disturbing.

I was clearly to upset to attempt to put in a new site, and with no current script for long acting insulin, I spent the entire night, rotating shots of Novolog in any place, not visible to the average person, for fear of having another crater appear. I called my Dr. who switched me to Apidra, and gave me a Levemir script, just in case. He did not want to see me, and said since I'm coming in, in about a week or 2, to just wait. But I have to admit, I am really disturbed. No one said this could happen, and the Dr. didn't give me any explanation either. Like most any woman, losing a little fat isn't a bad thing, but this is downright disfiguring. I'm just lucky that it is in a more hidden place.

So far, the Apidra hasn't caused another problem, but I find myself constantly feeling my butt, to see if anything is different. Not the best way to impress co-workers by the way. I look up every now and again to see someone staring in disbelief at me. Oops.

I am still very afraid of the insulin at this time. While there has not been a reaction since, I've gone almost 2 years on insulin, and months with the pump with no problem until WHAM (not the group). HUGE DENT.

Anyone have any experience with this, or have at least heard of this happening? I've read many posts about getting fatty lumps from overuse, but not this.

DOWN Like the Market

Lately my mood has been ... well down.

With all the lay offs around me and fears of what the future might bring, I can't help but feel unprepared and helpless. Last Monday, we were told that everyone in our company would have to take a mandatory 2 week unpaid furlough. Granted, I count myself very lucky not to be laid off, or have a permanent pay cut. Many of our sister papers have had 15% across the board pay cuts, lay offs, and many have closed. My friends regularly send me cartoons with the newspapers labeled RIP in graveyards and such. Last week, my mom called and got my voice mail at work. When I called her back, she was absolutely panicked because my voice mail said that I "could no be reached at this extension." She just knew I was fired (thanks mom!). As it stands, we have had 6 people moved out of the design department leaving the remaining few of us overworked. The stress and uncertainty is wreaking havoc on my control.

Worry is sometimes a helpful tool. I do not know if our industry will survive, and so I have spent a lot of time dwelling on what I need to do to prepare. My faith is helping me though so far, and faith sometimes works in mysterious ways.

I have taken the past 2 days off. Work is really busy, and since I now have over 5 weeks off, it seemed like a good time. It has been a great break, today especially.

I went on a relaxed mid-morning run at the local greenway. As I was heading back toward my car, 6 bikers flew past me. I noticed that one of them was a multiple amputee. He had lost his left leg at the hip and left arm at the elbow. AND HE WAS RIDING THAT ROAD BIKE WITH ONE LEG! AMAZING!

When I got to my car, they were all gathered around the parking lot. There were at least 20 military amputees, and they were all in competitive training. Most were on road bikes, some were on arm powered bikes.They even had service dogs who were romping around the bikes, clearly having a blast. They were all so nice and positive and INSPIRING! I talked to a few of them, and words can't describe how I felt afterward. It certainly put my life and attitude in check. Like with any disability or obstacle, it seems like spirit and true determination can overcome.

I left there feeling hopeful, optimistic, and oddly powerful. It was just what I needed for my stock to go up.

Insurance Woes

I'm feeling much better today, after worrying all weekend over a huge and inaccurate bill I received from Animas. It seems after the pump bill was sent and paid by my insurance provider, Animas has decided to go after a new contract rate. Friday, I received a bill for a large part of it. Now it's being straightened out, and I'm pretty sure my insurance will stick to their guns, but just the thought of all that extra money has made my stomach do somersaults.

In general, I seem to have a sensitive panic button. That really bothers me. Even knowing there was nothing I could do over the weekend, that I knew it was probably a huge mistake, and that worrying was doing ABSOLUTELY NOTHING but making me ill, I still focused on the worst possible scenarios. I can't stand that I do that.

I can tell myself that it keeps me from ever being disappointed or even surprised, but that's not really true. I think maybe, not having complete control is almost intolerable. It seems preparing for all possibilities, even the worst, gives me the feeling of control. An instant way to reclaim order and prepare. In the mean time, I'm sure it detracts me from enjoying the time in between, and is taking years off my life via stress.

Diabetes has certainly left me feeling vulnerable and insecure at times (too often). Especially when I think about money, insurance, and the fact that I will be dependent on these for the rest of my life. Being at the hands of other people to help control/manage my health is humbling and sobering. I've never had much need to become familiar with doctors & specialists. I've had little experience with dealing with insurance companies and things like coverage. That is until diabetes arrived.

Just two weeks ago, I had to spend over 2 hours on the phone with my insurance company, when a computer glitch caused my insulin to be denied. MY INSULIN. MY LIFE. That's pretty scary if you simply don't have the money to pay full price. (I did find out that they covered CGM at 100%, so not a completely bad call)

It's so hard to find a balance between preparedness, and pessimism. I've spent most of the day feeling silly for the anger and worry, that my friends were talking me down from on Friday. I'm sure as time goes on, I will be a pro at handling all the bumps in the road that come from diabetes. But I wish I didn't have to. I wish no one had to. maybe one day...

PRESTO!

Last Friday, I got a UPS notice that something required my adult signature and that they have missed me twice on delivery. Since then, it has been torturing me that I don't know who it's from or what it is. The only info I could get from the tracking # was that it was from Massachusetts. Adult signature required... could it be pump stuff? No, I haven't ordered any. A belated Christmas gift? No, I don't know anyone from there. I repeat, it was absolutely driving me nuts.

So today I come home to a UPS package in front of my door. I suppose signatures are not required on Tuesdays. Of course, I run upstairs and open it, before I could even let my dog out. I sliced open the package and Presto! No really, that's what it was. I got the Agamatrix Presto meter that I signed up for IN JULY at the CWD conference. It came complete with every pamphlet they could throw at you, an extra customized leopard case, red meter and a discount cards for strips.



Now I would be really excited if it came with actual sample strips. I've heard from a lot of people that Agamatrix meters, like the Keynote, are pretty accurate. This is why, it was the only meter I was super interested in at the conference.

It did come with the discount card, but NO ONE sells their strips (or meters) in B'ham in retail. NO ONE! I will have to order them online, where I can't use the discount card. Now, in all fairness, their strips are really reasonably priced, but I would like to actually try it before investing further. I also hate having to wait on something to ship before I get to use my new and nifty gadget.

Curious to excited to disappointed in a matter of minutes. Oh well, till I get around to ordering anything, it will be one more meter I get to add to the diabetes closet.

New Year, New Hope, New Vlog

OK, so it's a new year, and I've made no resolutions, because then I would surely fail. Instead, in my optimism following a long and much needed vacation, I'm working on trying new things. Better D-management, new foods, new books, and even trying to vlog. I know, I know... what was I thinking! Well, I'm probably not, so I'm apologizing in advance for the poor quality (computer webcam) and the ugly picture (Oh wait that's just me!) I really hope I look better in person, but I digress.


1st Offical Vlog from Mandysweetlife on Vimeo.


In case you can't hear me, I'm basically curious on every one's opinions on A1c vs meter averages. Mine never match and I've just about decided that my meter doesn't really count. Especially since I got back another A1c this weekend and it hasn't changed at all. It's a great A1c of 5.8, and I really won't complain. My averages on my meter however have been 209, 197 and 197 for my 30, 60, & 90 day overall average. Does a blood sugar of 300 really affect you if it doesn't show in the long term perspective? That's my internal fear. I'm trying to determine whether to actually start basal testing and carb ratio testing (you know, really USING my pump), but I'm not sure it's worth it. My doc was pretty easy going last week, so when I told him "I'm good", he didn't question. Makes for very quick and painless visits with no logs or downloads included.

If you choose to watch my very amateur vlog, the password is sweetlife. I plan to vlog more if people actually want to see it. Certainly no hard feelings if you don't. I just know how much I enjoy those of you who already vlog. Thanx!