Unicorns! Glitter! And a little bit of Ohh..

Wednesday was one of those days when diabetes was all about unicorns and glitter, and I've been smiling ever since.  Except then I remember the news that my awesome nurse is leaving.

I haven't been with her very long, but I was looking forward to many more years.  I realize that through my blog it may not seem as though I'm shy, but I am.  I trip over my words and I get uncomfortable talking to new people.  And I've never felt this way with her.  And I've never had to say "I think there's something wrong with me."  (with any medical professional) (And I almost didn't)  But I didn't feel uncomfortable at any time during this appointment.  I walk in there and I feel comfortable.  And when things are going really wrong, she has been there to support me.  She helped me figure out that my body is much more sensitive to insulin when my blood sugar is extra high, so when I figure out a bolus over 350 mg/dL, I reduce it by 10% before bolusing.  And it works!  I know that there is a lot of talk out there in the DOC that we are awesome and medical teams don't always know what they're talking about, but I never would've figured this out without her.  Before I made my final decision about switching my pump, I called her to hear what she had to say.  I knew I didn't need her approval, but I wanted to know what she thought.  I value her opinion.

I am sad to see her go.  I am sure that wherever she is off to next will be fabulous and wonderful and I hope that wherever that may be, they will appreciate her.  In the excitement that was finding out my A1C, she told me that my hard work made her day.  I know that she "lives" in diabetes world, and diabetes world is awesome.  But from what I can tell, she doesn't have diabetes and is still awesome and still gets it.  (for you non-D, non-medical people, you'd think that this happens all the time, but it doesn't!).  When I told twitter, I got more responses than I even could've imagined.  And it made me feel so good.  And when I told facebook, all my D friends liked it (or parents of D friends), but no one else did.

And once again, my words are coming out of my brain and they aren't making any sense.  That's what happens when people mean more than words can say.
Forgive my lack of words.  But I'm changing the wording:

"An awesome diabetes medical professional is worth a thousand million words."

D appointment

I did today's post a little differently than I normally do.  Yesterday was latest "endo" appointment, and there were a lot of emotions swirling around in my brain.  So I wrote the beginning of my post before I left.  I didn't know where my emotions would be post appointment, and I wanted to be able to accurately capture all emotions included both before and after this appointment. 


Before:

Today I have an appointment with my D nurse.  I'm excited for this appointment.  I know, it sounds crazy.  But for the first time in a LONG time, I think I'll have an A1C under 8.  And I think the last time that happened was when I saw her and when I had the first one.

But I also have a list of questions I need to ask.  The first being about seeing an endo.  Since I had such an awesome endo as a kid, I feel as though that is the right path.  I won't stop seeing my nurse, because she's awesome.  But there's just something in me that thinks I should also see an endo.

And then the fun questions.  When I was skiing, my 3rd and 4th toes of my right foot got tingly.  I think it only happened in the chairlift, and skiing down the mountain made it go away.  But I still don't like that feeling.  BUT, it could be because my toes are in a tight, enclosed space.  And cold.  Please pray that that is what it is.
But my feet also get tingly when I sit cross legged.  And I sit cross-legged all the time.  I know that sitting like that can enhance neuropathy.  But it's such a habit.  And even sitting here writing this I'm cross-legged.  I am trying beyond anything to stop sitting like that, because it's the only time my feet get tingly.  But Diabetes, PLEASE don't be the cause.  Please let this go away if I stop crossing my legs.  When I get the little pokey thing on my foot, please let me feel it.  Please don't make me walk away crying.

And just this week I wasn't feeling like I was at the top of the game, and as I went to bed Sunday night I realized that I have the classic Celiac symptoms.  This is the one that is most pressing on my mind at the moment.  I have friends and family who have this, so I've certainly eaten this way before, but not as a lifestyle.  Yesterday I tried to eat gluten free to see if my symptoms stayed or went away.  And guess what, they went away.  I know that one day doesn't prove anything, but it's certainly leaning in that direction.  There was more around that was gluten free than I thought there would be, but then as I was getting the kids snacks ready, I just grabbed a piece of cereal (before the milk was in it) and ate it.  If this ends up being a new "thing" for me, that is going to be one of the hardest parts.

My thoughts going into this appointment: C'mon diabetes.  I'm working at this again and now you're going to shove all this at me?!

After:


I AM KICKING DIABETES' ASS!  Yes, I need to tell you about the whole thing, but first, my A1C is 7.2!  At my last appointment it was 8.1.

I go in and do all the boring things (blood pressure, weight(it went up slightly, but I blame the rain boots and jacket), BG test and blood for A1C) and they take my pump(s) to download them.  (And I hope you didn't want a waiting room picture because I never was actually in the waiting room.)  When I was done with her, I went to wait in the exam room and I didn't even time to tweet that I was there before my nurse came in.

She asked how I was, what my basals were, which led to talking about switching pumps and how the meter remote was my deciding factor, waiting for my pumps and their reports to come back and if there was anything else I wanted to talk to her about.  I told her how I had been experiencing a few Celiac symptoms lately (my guess is that it's been a few weeks) and how on Tuesday I ate gluten free and I did not experience the symptoms.  I wanted to make sure she knew that I was not self-diagnosing, but it was the best way for me to test my theory in such a short period of time, and that I would just like to get tested.  I wasn't going to need labs today, but I think that is worth knowing.  She informed me that there are also people who are not Celiac, but have a wheat intolerance, so I may just want to cut back.  This is something I have been trying to do, but now I think I just need to focus on it a little bit more.

We continued on and she asked about my feet, so I told her my tingly feet experiences, and she did the metal vibrating tool thing on my big toe and it felt like forever before I could stop feeling.  She said she does not think I have neuropathy, it's just that when I cross my legs my blood vessels are getting squished causing my feet to feel funny.

And then my pump(s) came back with a ton of print outs and we realized that I've been going high before lunch, so we increased my breakfast insulin:carb ratio.  I told her how I was going low post lunch (a time when I'm frequently getting in the car) so I changed my basals without doing a basal test, but I'm not going low anymore.  Tuesday and Wednesday morning I woke up high, but Monday night I was eating a lot and SWAGing, so I didn't count that as a high BG in the morning, but an unsuccessful SWAG.  She agreed.

And then she said, "let's check your A1C."  And she squealed.  "Are you ready?" as she turned her computer screen to me.  But I couldn't find the number!  And she told me..."7.2"  And as I stammered through composure and smiling and a whole lot of happiness I heard "Look at what YOU did!!"  (And this statement reminded me of something I think George's doc would say)  And I managed to tell her I haven't been this low since before I started college.  If you don't me well enough and want a reference point, that was 2003.  And then even better, "I hope you're going to celebrate tonight!"  I don't know if I squealed or not, but I did when I got back to my car.  And then she told me that this number/drop is even more amazing because it wasn't achieved because of lots of and/or extreme lows.

And then I had to go back out for labs.  I was standing there waiting with all these other people and they were all looking kinda blah, and I couldn't help but smile!  I got my blood taken, scheduled my next appointment, and sat down to text my mom.  And then of course share it with all of you. I'm still riding on this high, and I couldn't be more proud of myself if I tried right now.  

Contacts

Last week I went back to Joslin a second time, this time to meet with the optometrist to see about getting contacts again.  I have them!  But I wasn't allowed to wear them right away because of my cold.  It also means I have to go back in a month so he can see how my eyes actually accept the contacts.  Not only do I like the way I look without glasses, but I don't have to adjust my contacts like I do my glasses.  And oh, did I mention that I can wear sunglasses like

I'm a simple girl who appreciates and enjoys the simple things in life. :)  Yesterday I went for option #1.  Haven't decided which option to go for today.  

Another day at Joslin

Last week I had an appointment at Joslin.  These appointments are so much less stressful when I schedule them during my vacation, even though I don't particularly enjoy hanging out at Joslin during my vacation.  I went in to have the nurse test my BG and get more to test my A1C.  I used the disposable lancet on my thumb so that I could not only have enough blood for the BG test, but also to have enough to drop in the vial.  She wanted to scrape it off my thumb, but I still remember the days of needing to drop my blood onto the test strip, so I was all set.  The nurse was amazed by this.

At the moment, I don't have an endo, but it's something that I've been talking about.  It's something that I find comforting.  Saying "Dr. ________ is my endo.  If something is wrong please call Dr. _______."  But right now I have a Nurse Practitioner who I love.  I go in and sit down with her, and we discuss if I've had any more crazy spikes.  I tell her about how I didn't bottom out, so I consider that a success even though I don't like the ^400 part of it.  We talk about my A1C, which is 8.1.  At my last appointment in November, my A1C was 8.2.  I was hoping for a bigger drop, but I'll take any drop.  And so will my NP.  Our focus now is getting rid of the crazy spikes, and then hopefully the A1C can level out and come down.

When I went to my PCP about six months ago, I had an awful lab experience.  I know that getting these tests are an important, preventative measure to take, but I hate them so much.  When I was a kid, I was that screaming child you can hear behind the curtain.  There was the time when I got "stabbed" 5 times before taking my blood was successful.  And then we met Claire.  She was this little old French lady, and she knew what she was doing.  The stress was still there for me, but less than with the other phlebotomists.  (And I totally spelled that right on the first try!)  I would ask for her every time I went, and I got her too.  And then the worst diabetes day of my life (at that point) happened, "Claire doesn't work here anymore."  She retired.  There has never been another Claire for me, but she definitely had a positive impact on my life.  Last week was the first time I got blood taken at Joslin, and this phlebotomist was really nice.  I told her how people always have a difficult time taking my blood, and she was just very calm and relaxing about it.  She talked to me the whole time and before I knew it, I was done.  I don't know when I'll find the results, but I think I'll request that Joslin take my labs from now on. (Is this possible?)

"Standing your ground is progress when you're battling a hurricane." David Weinbaum

Diabetes Success

When my week started like this, and ended the same way, it was time to write down, print & fax my numbers over to Joslin.  That was on a Friday, and I wasn't able to talk to my nurse until Wednesday or Thursday.  She had me change my overnight basal, my sensitivity factor and some advice.  She suggested that I seem to be extra sensitive to insulin when my blood sugar is super high.  Over 400 is how I'm interpreting super high for right now.  So she suggested that if I get that high again, to not take a full bolus. So on Friday when I was 485, I plugged it into my pump and before I sent it on it's way, I decreased it by 10 percent.  I was a little skeptical about this, but, it worked!  When I got home from work, I felt low and was hanging out between 65-75, so I had two juice boxes.  But that is the lowest I ever went!  There were no BGs in the thirties.  There was no bottoming out.  There was no scary low.  It just was a baby low, and my BG even leveled out enough to go out for a beer.  Friday's correction was a diabetes success!

Eyes

I've never had the fancy eye pictures taken before, and the whole process kinda freaked me out when I was at Joslin, but I was definitely intrigued.  The eyes are the one thing that scare me when it comes to diabetes complications, and I got kinda yelled at for not having had an appointment in two year (yea, I know...but it will be happening later this month, so stop your worrying.)  When I saw an envelope in my mailbox from Joslin, I didn't know what it would be.  It was this! (that I'm holding in my hand)  And you know what it says?!

No evidence of Diabetic Retinopathy and No Diabetic Macular Edema for either eye.  It wasn't really a concern at this point, but to have it confirmed = wahoo!! :D

December 2: I Want a Hippopotamus for Christmas

This is one of my mother's absolute favorite Christmas songs, especially because it was written to raise money for a zoo.  It has since also become one of my favorites.  And last year watching Mom & one the synchro girls do a duet to this song was beautiful, funny & heart-warming.

First Day at Joslin

This week I had my first ever appointment at Joslin.  It started a little stressful because of my lack of paying attention to the time and my dislike for the Longwood area.  I get inside and I got directed to the Beetham Eye Institute, where I thought I would be getting my eyes dilated, but that wasn't part of my plan that day.  Instead I went upstairs where I met a very nice woman who helped me check in, and I received a folder with a whole bunch of information.  I started with the Joslin Vision Network where they took pictures of my eyes.  I have never had this done before. The woman showed me different parts of my eye, but since I did a research project on macular degeneration in college, I kinda knew what I was looking at.  I found it a little eery though knowing I was looking at my own eyes.  We talked about the specific parts of the eye, me needing a dilated eye exam, and then I went back to the waiting room.   I emailed & texted friends until I  got called in by a nurse who took my pump and meter to download it, and take a quick sample to test my A1C.  Back to the waiting room.  The nurse came back and handed me my pump.  My site is currently in my leg, so I was a little hesitant to reconnect in the middle of the waiting room, but I'm at Joslin, so, what the hell!  I reconnect, go back to my phone and wait for the nurse practitioner.  I want to give them some sort of nickname, but I feel it either is too obvious or doesn't do her justice.  So I will just call her my nurse practitioner.  We start talking, but how do you put 21 years of diabetes history in just a few sentences?  So we talked about my diagnosis, but that was a lot of  "I think this is how it happened...", and how long I have been on the pump (March 16, 2002), and if I've ever been hospitalized for DKA (yes, twice).  We went over my pump and meter printouts, and my A1C.  Since I test about 15 times a day, a sensor probably wouldn't help me, except overnight.  Good thing since I'm not ready to fight with insurance yet.  My A1C is higher than my BGs portray, so we're focusing on the overnight.  Although I'm not excited about waking up in the middle of the night for a while.  But if it helps me get my A1C down, I'm all for it.  And considering my last official A1C was way higher, 8.2 is definitely something to start to be proud of.  For your information, this is not where I want to be, but the downward slide is something I'm planning on continuing.  We changed my sensitivity factor, talked about my shin splints and I got a new meter to match the test strips my insurance actually covers.  After I got my prescriptions from her, and when to see her again, I went back into the waiting room to wait for the Diabetes Educator.  At this point, my stomach was screaming.  I was so nervous that I hadn't really eaten anything all day.  But I go back to my phone and I finally open the folder and I find out that there are two surveys that I am supposed to fill out.  I start filling them out and I get kind of frustrated with them because well some days my answers might be a one and somedays they might be a five.  (That one had a lot of questions about frustrations about living with diabetes.)  And then the diabetes educator comes out and calls my name, so I gather all my things, including my log book (which no one actually looked at) (and is a binder) and walk back with her.  It was a little later than my scheduled time, and I'm a patient that technically doesn't mind, but the nanny taking care of Girl Genius has already called me, so I'm a little bit nervous about that.  (I checked the message and there was no emergency.)  So we go back and we just start talking.  We talk about how long I've had diabetes, where I got taken care of before Joslin (I will always love you Dartmouth), how I treat a low, and what to do on a sick day, and all those sorts of fun things.  She also asks me what I talked about with the nurse practitioner.  We go over my surveys a little bit and I speak about how I made comments on mine because diabetes can't be characterized by one number.  This diabetes educator was a fast paced woman who treated me like an adult!!  Yes, I'm 25 years old, but during my college years I wasn't so confident about diabetes (and with good reason), so now I'm here and this woman is looking at me like a peer.  We talk about the information I know and how to use it.  Both the educator and nurse seemed surprised that the doctors and nurses were knowledgeable from Dartmouth.  She asks me if I wanted to attend classes, and I too hastily said "NO!"  and she laughed, but with good reason.  Classes aren't aimed to people who are already knowledgeable.  And I am knowledgeable about diabetes; I always have been.  It's just a difference of knowing the information and correctly applying it to my life.  In that whirlwind visit, I got a "blue book" (which I should have looked at by now, but haven't), talked about overnight testing, and agreed to come back in one month.  The other thing we talked about is my weight.  I am not where I want to be, but I'm also not too big.  She asked if I gained weight since I've been on my pump. "Well, Diabetes Educator, I got it when I was sixteen.  So yes, but I don't think the pump is the reason why."  We both laughed at this, because my pediatric (pediatric = favorite ever!) endo had talked to me about this.  And my fluctuation in weight over the years has really never been related to the pump.  It's just life.  


I feel like the end of this post is a little whirlwind, and little all over the place, but that is how the meeting went, so I'm going to leave it.  I feel empowered now.  I feel in control.  I feel great, and  when my day started I didn't think that is how I would feel.  


  

It Was That Kind of Day

Yesterday I had my very first appointment at Joslin.  I've been hearing wonderful things about Joslin for as long as I can remember.  Me though, I'm not a fan of new doctor appointments.  I'm not a fan of new anything actually.  It makes me nervous; I get all flustered; it's just not a good feeling for me.  I didn't have to work yesterday morning and Boy & Girl Genius were both set up for playdates in the afternoon.  But all of a sudden, my appointment is in two hours and I'm still sitting in my pajamas on the couch.  Luckily, the drive there is very easy from my apartment, so I was able to park my car in a garage.  Although, for those of you out there with minivans, you are not compact.  And I realize that your children don't actually have to open their doors to get out of the car, but those of us with compact cars, we do, and it's very hard to get in and out of our cars.  I start walking, and luckily there's a giant banner announcing where Joslin actually is. I walk past it though at first, but I manage to make it inside, where I was able to get to where I needed to be. Everyone there was quite nice, and I'll talk more about that later when my brain is actually functioning.  But after I was all done, I answered the four missed calls I had from a fellow nanny who was taking care of Girl Genius for me, and I was finally able to pick Girl Genius up at 5:00.  I don't usually have to drive at 5:00 since my day usually ends at 6:00, but we got stuck in rush hour traffic.  So a drive that should take 15 minutes, took us 40 minutes when I was finally able to pick up Boy Genius.  Ten minutes later, Dad Genius walked in the door and I was on my way to NH for synchronized swimming.  I got to see all the girls (especially the ones I used to coach), we practiced figures, and ran through each of our routines twice.  On the drive home, it was really windy and I saw the back of an 18-wheeler almost blow into the car in front of me.  There some sort of large carcass in the middle of the highway, and it was down to one lane because they were painting lines.  I got back to my apartment at the nice time of 10:30 and molded into the couch before peeling myself away to my bed.  


I definitely want to say more about my actual Joslin experience and to compare with others, but it was the first time I felt like I got treated like an adult, so it was a good experience, but like I said, that deserves to be written about with a functioning brain.