Year in Review: Diabetes Style

Hi kids! It's the most wonderful time of the year,in which you get updates from your great aunt's uncles friends dog and actually,it's kind of fun. No one ever sends updates on their diabetes though because I guess it crosses up comfort levels in the worst way. No one wants to hear about your betes misadventures. Anyway,2015 was the year that challenged me in ways previously not ever imagined so I'm going to break those social norms and give you a review of how my year went.

February: Child had an MRI. Child had a karotype blood test,to check for chromosome abnormalities.

March: Childs blood test comes back positive for chromosome micro deletion. (With a possibility of MODY diabetes)World ends.(or just feels like it does) DUnConference in Vegas proceeds,

an amazing diabetes experience that 

does much good to a hurting heart.

June: Childs blood work and abdominal ultrasound come back normal.

July: Friends for Life conference in Orlando. Find out about beginning  NPDR complications (both eyes). Cry a lot. Crawl back from emotional hit in heart.

August: Childs first appointment with pediatric endocrinologist. Talk about MODY testing. Current a1c at 5.6 and all blood work good so agree on periodic blood testing and yearly a1c check.

September: Own appointment with geneticist. Send off blood for specific karotype testing.

Karotype test comes back positive for same chromosome abnormality, raising extremely strong possibility of having MODY 5 not type 1 diabetes.

October:

Part 1 Artificial Pancreas study admission. Data collection begins.

Have tear in right eye's virtreous fluid. Stressful stat appointment with Retina dude reveals that it is a common thing with age or with cataract surgeries of which I had 16 years ago. Reassured retina is not detaching but the new floater may be permanent,or it could go away over the months. It is not directly diabetes related.(everything else is stable/good.) Recheck in February.

December: All antibodies other then GAD come back negative.(GAD was very positive) Confirmed by geneticist that it is MODY 5, and not type 1 diabetes. Also not Bartters Syndrome.Endocrinologist gives RX for trial of sulfonurea. 

Part 2: Artificial Pancreas study. Real deal . So,so, so incredible.(#ILike)

In conclusion,everything I thought about my body was essentially proved wrong this year,I got three new diagnoses,and my son can get MODY as well. (Which feels bad but anyone can get type 1 too so I'm not sure why it feels so bad. Every parent with D is afraid their child will also get it.(on the plus side,he's had no elevations in blood sugar and all the labs are good.)  I'm waiting to January to try sulfonureas because it's going to be a very interesting can of worms to open,& my Endo gave me explicit instructions on how to do it all.(the drug causes hypos very readily) It's really unknown as to whether MODY 5 people can use sulfonureas,usually MODY 2's have more luck with them. MODY 5 is super rare and MODY 2 is the most common kind. MODY 5 is generally associated with complete insulin dependence just like type 1. But it's worth a shot.(obviously,it's not a good idea to go off insulin entirely,it would be more of an adjunct therapy) The geneticist informed me that I'm the one and only MODY 5 she's ever seen.(she did see a MODY 2) It still feels surreal,after 17 years of thinking that I'm type 1. Few people have ever heard of it,much less know what it is. It's easier just to say you have type 1,at least as this point. HCP have at least heard of that. I don't even know much about it much less how to explain it to someone else.(there's limited info on the Internet) It's so very similar to type 1(islet destruction) yet it's different too. And I'm going to be spending the rest of my life unpacking this, I guess.

A Rendevous With the Artificial Pancreas

Last weekend, my dreams came true. Well, kind of.It was a joyous thing, to get off from class and coast off into parts unknown, the weekend entirely free from school and kid and spouse and life and blahdeblah...a kind of weekend getaway, as it were. I'd gotten a random "hey, we think you could be a good fit for this study" email from UVA several weeks prior, and after some serious analyzing of my schedule determined I could do it Friday Oct 16-Sunday October 18. Since UVA is a nice little 3-5 hour drive away, (depending on the Beltway traffic) timing was absolutely everything. I have certain days that absolutely do not work (Tuesday, Thursday, and Friday) so I didn't think initially I'd be able to do it. I was able to get my LabCorp screening bloodwork done on Monday of that week,(remotely-since LabCorp is a national chain)but I still had to come in to meet with the study physician and get an EKG. Wasn't too happy about that, but we had an "off" Thursday (which basically only happens twice this semester) so I used that day to go down and back. Because of traffic, it took 5.5 hours to get down there and 6 to get back. (I'm not going to lie, that sucked, but one of the RN's there took me out to lunch because she felt sorry for me that I had to travel all that way. It really should have only taken 3 hours, in a non-traffic-less world but good luck with that one).

(Virginia is for people who love the AP.)
Anyway, everything was looking good with my bloodwork and EKG so the timing was on for Friday afternoon at 4 pm. I was hoping to sneak out of class early, but opportunity did not present itself (they've got this system where at the beginning of skills lab, they take attendance and at the end of skills lab, you have to turn in a form) without getting Critical Units, which is how you fail the program. Nah. (I'd just have to get there slightly late) I'd made sure I was ready to hit the road the instant it let out.(snacks, drinks, address in GPS, bladder empty) It did let out, and in two minutes I was in my SUV and on the road, feeling that joyous October breeze as I sped down 495 at 70 mph. 95, 495, 66, the miles sped by and I was making good time. On 29S there were some major road snafus but I still got to Charlottesville around 4 pm. I called the coordinator to leave a message, because I was having difficulty locating the "research house" (drove by it 3x before I got the idea that said "footpath" was actually a road, and I needed to drive up that road.) Parked behind the house, drug in my bag and backpack and announced my presence. The coordinator was just calling me, because by that point I was about 30 minutes late.(I would have been much later if the traffic hadn't been so good)

(The research house. It dates back to 1800,as part of an old plantation. Miraculously,it was not razed during Sheridan's Civil War burnings of 1863-4(?). It is quite picturesque,and cozy, if you don't count the fact that the baseboards creak at night and when you are the sole research participant it gets a little creepy in the dead of night. Yes, I always had a nurse and tech with me and University Police was a few minutes away but I couldn't help thinking worst thoughts in the dead of night.)

The first order of business was to prove a state of non-pregnancy, so a urine collection cup was unceremoniously handed to me for a stat dipstick. That was negative (like it was going to be otherwise between the lab order and the urine collection,(4 days) but I digress) so the study coordinator told me I was cleared to participate.

Took a deep breath, and they showed me around the house and I picked out a room to stay in. (there is one patient bedroom downstairs and multiple rooms upstairs) I was the only participant that weekend, because the other individual failed the bloodwork. (for this study, the a1c has to be 7.0-10.0. Courtesy of nursing school, and a 0.8 jump in my a1c since August, I was in that range).

The main hub of all the action was the dining room. About 4-6 people were hanging out in there, waiting for me, to get things started. I put on the study Dexcom transmitter and began the 2 hour warm up period. The first nurse then introduced me to the study glucometer..and had me check a blood sugar.

At that point, it was about 5 pm. I wasn't allowed to eat until I entered bgs into the Study Dexcom,and until the study doctor had placed the study pump on me. So I wandered into the living room(just off the dining room) and watched tv(they had multiple subscription services, but I only have Hulu Plus so the data analyst helped me set that up) and I just lay on the couch and chilled till about 6:30, when my G5 (phone) started telling me that I was trending down into the lower 70's. So I went back to the dining room, they checked me (83), and fed me two glucose tabs. 30 minutes later..checked again, 95. Fed two more glucose tabs. Calibrated study Dexcom. One of the study physicians had arrived (he is the medical director), and he set up the study pump (a Tslim) and synced the pump and cgm with the Artificial Pancreas. (run off an android phone) He put in the infusion set,(in my abdomen) because it was a straight metal needle and I'm not really comfortable with those sets.

This is what my abdomen looked like at that point.

(lovely, nu?) Normally, I don't put sensors or sets in my abdomen because of scar tissue..but they were insistent. My G5 transmitter was on my outer thigh,well out of the way of all this get up.)

I then removed my old pump so I wouldn't be getting 2x the amount of insulin needed, and they gave me the official Fanny Pack of these Artificial Pancreas games.

It was quite roomy, which was good because I had to keep the Android phone, study cgm, and insulin pump in there at all times. Inevitably my personal phone and glasses also lived in there because I still needed to be able to view my cgm data,(the study physician and multiple people had told me this was fine) since the study cgm was blinded,and not doing me a whole lot of good with the personal diabetes management.

Upon further inspection of the pump,it was revealed to me that it was a prototype punp and only had those two screens. And the study cgm was a special prototype as well, the data was blinded from my view. It was a lovely "pumpkin spice" fall color..not your regular blue/black/pink receiver.

It was amazing, holding the AP phone in my hand.(much like holding a newborn for the first time) I got this rush of "Hello, future!" and maybe even a little teary-eyed as I cradled that piece of technology in my hand for the very first time. The study doctor repeatedly told me how very appreciative they were of me (etc.)and not that it was needed, because I would have jumped at the chance regardless but it was nice to hear. (this particular trial arm had just been approved so I was #1 and a great deal of protocol-reviewing went on) On the table, there was a document for the protocol of blood sugars/ketones/seizures/what have you that had every possible scenario. Under 80 and over 300 there were much more in-depth,involved checking/treatment. Any seizure, nausea/vomitting, blood level of ketones on HIGH or two blood sugars under 50 put you out of the trial. The side table was stocked with 4 glucagon kits, testing stuff, Dexcom stuff, 8 glucose liquids, 4 large jars of glucose tabs and other random diabetes supplies.(I brought my own insulin)

 (Ready for anything!!!)
It was then time for supper- a microwave dinner of some chicken/pasta type thing and a couple strawberries. I guessed the carb amount, and entered it into the Artificial Pancreas screen along with my blood sugar. The AP gave me a suggestion (based on my entered insulin: carb ratio) and I confirmed that suggestion. I ate dinner, while everyone stared at me.(or rather, talked. Talked a lot.) The study doctor left, the tech guru left, the data analyst left, the other RN left, the study coordinator left, and the clinical coordinator left...leaving the overnight RN and the monitoring technician. (my cgm data went to the "remote monitoring" computer that they have (aka laptop), so that they could see my data whatever I was doing.) I was very tired so I went to bed, before the recommended 11 pm time. At 11:20, the RN woke me up to check a blood sugar because remote monitoring was showing me over 300.(which is their "confirm with blood sugar and correct" point.) Since this is the control admission, I was the one inputting the data and determining the dose to take. After that, the signal between the cgm and the AP went off the grid so the tech and the nurse were both trying to figure it out (involving a call to the study doctor to let her know my blood sugar, since it was 300, and actions taken.) Blood ketones were checked again(2nd time) and it was 0.2. I entered everything into the pump, took the corrective dose, and eventually fell asleep. 

(Breakfast. Some omelette thing,2 strawberries,and my Diet Coke Zero.)

That dose worked, and by morning I was around 150. I had to eat breakfast between 8-9 am (protocol), so I wandered out to the dining room to check a blood sugar, guess the amount of carbs in the breakfast, and bolus through the AP. Most everyone from the night before had shown up again so I figured this was the core data analyzing team. (names were not sticking though. Ever meet 10 new people in 12 hours?)
Exercise was scheduled for 10:30 am, so there were a lot of things that had to take place before then. Two new RN's showed up and the night RN left. The study MD talked to me about the politics of research studies,the FDA, and of the many "agreements" that had to take place between various companies to make said technology shareable between pumps/cgm systems. Another research study (Medtronic) was going on, and had essentially taken up their regulars (wine and dine baby, I confess to getting a little jealous when I heard that Medtronic is paying $1100 for their research study AND PUTTING THEM UP IN A SWANKY HOTEL AND GOING TO NICE RESTAURUNTS), which is why they are calling the out of town people (aka me) because you can't be in two research studies at once.(I'm the back up plan.) Don't get me wrong, any AP research study is better then none but eating crappy microwave dinners and being reimbursed slightly more then the cost of your gas pales in comparison to the above. Regarding the food, apparently the chef was on vacation that weekend but the microwave dinners just kept getting worse. So much so, that by Sunday afternoon I just wanted to leave and never eat food again. The data analyst (also a type 1, who had been involved in the Medtronic AP studies) told me to get involved in the Medtronic studies..because they are that swanky. (That's going to be my life goal, when I exit this one.) Most of the people there were either RN's, going to RN school, or type 1's themselves. (there were two type 1's) So even though there were no other patients there that weekend, we had some pretty great
"exchanging of war stories" (which is wont to happen when you get PWD together.) It was a very friendly, jovial environment. (Everyone is on a first
name basis, even the MD's. Patients are referred to by their first names, because of HIPPAA, and anything you choose to disclose to other patients is up to you but you do sign a waiver stating you accept any loss of privacy (aka there's lots of loss of privacy when you've got people swarming over you day and night.) Killed time for a couple of hours,and I then changed to exercise clothes and they put a heart rate monitor under my ribcage which effectively cut off all meaningful breathing.(too tight) A cab (van) showed up and we then all got into it and went to the UVA gym.

(the bag o' Diabetes Crap that RN #2 carried out)
At this point, another MD (I know this MD from past studies, I met her in 2003) showed up and we went into one of the gym's rooms (with a lot of exercise bikes) The heart monitor stopped working, and no amount of tweaking things was getting it working again. The sole other occupant of that room stared at me and my entourage. (probably thinking, what the what?) Checked a blood sugar, decided to eat a snack bar/drink water/and not bolus.

I confirmed with the MD that I wasn't bolusing for the snack I was going to eat.

Got on the bike. Pedaled for 15 minutes: goal heart rate 140. Heart Monitor and Fitbit went in and out of not working, so one of the two RN's that was monitoring the bike situation placed her fingers on my wrist to check it manually. When 15 minutes were done, they helped me off the bike and onto a chair. Checked my blood sugar. Gave me water. Let me rest for 5 minutes. Checked my blood sugar again. Got back on the bike-pedaled for 15 more minutes (goal heart rate 140). Helped me off the bike, blood sugar, hydrate, five minutes, blood sugar. Got back on the bike-15 more minutes, goal heart rate 140. Back off. Blood sugar. Hydrate. Rest.

Blood Sugar Progression:

7:16 AM: 240 (correction given)
8:15 AM: 183 (breakfast bolus given, based on suggested dose)
11:14 AM: 176 (start of exercise. Ate a 15 carb snack bar.)
11:32 AM: 160
11:37 AM: 166
11:54 AM: 153
11:59 AM: 158
12:15 AM: 143 (end of exercise)
12:43 AM: 166. (Lunch blood sugar)


By that point, I was more then done and really tired. (I'm not a spring chicken anymore) I could see why they do an EKG before starting the study, because heart rates of 140 are no joke if you aren't used to them. The seat was also exceedingly uncomfortable, so between the seat and the creaking of my knees I felt like I was 90 years old. Everyone was pretty supportive though (even if they didn't have to reach a HR like that when they pedaled on the bikes),laughing and keeping me otherwise amused. (except for the whole not breathing thing) It felt really great to take that horrible constricting HR monitor off. Boarded back up in the cab, back to the research house.

Lunch was extremily horrible. It was a giant burrito, and it was extremely dry and tough. I literally had to force it down my throat but at some point I just couldn't do it anymore and told them that. (No butter or sauces were permitted, because that would alter the caloric count) You are supposed to finish all your food but it just wasn't happening. I told them that it was going to come back up if I did that, and the RN disposed of it in the trash can.

By supper, my appetite still hadn't returned. I forget what was served but it was along the lines of pasta/chicken/soooo dry stuff and I put off eating till the last possible time that protocol allowed, because my appetite had officially died. The RN tried to make it appetizing(sprinkling the Parmesan cheese on it, putting it on an attractive dinner plate) and that helped slightly but it was a struggle. Post lunch, at 3:30 PM I was 254, I requested a correction and my blood sugar was 293 at 4:10 pm. Eventually, it went down to 155 at 6:42 pm. I "estimated" the supper carbs extremily high, because I was getting sick and tired of the highs and reaching the "I want to rage bolus this down" stage. That seemed not to matter one iota, blood sugars at 9:37 pm (185) and 11:01 pm(183). Corrected for the 183, which the night nurse wasn't too thrilled about because I supposedly still had insulin on board but I did it anyway. The night nurse was also a Labor and Delivery nursing instructor and she asked me about how pregnancy had gone. It felt truly weird to be complimented on an "excellent job" for having a normal weight baby,when so much of that just felt like dumb luck. Oh,I did work hard(12-15x a day checks were the norm) but it still felt like luck,that there were no serious complications. Sure she "got it" on some level but I'm not sure I deserve to be complimented for luck. It was slightly weird,because it puts you on a pedestal you don't belong on.

 At 4:56 am, I woke up feeling high as a kite(G5 had me at over 300) so I wandered out to the dining room and requested a check. This didn't suit too well with the technician because remote monitoring was showing me at under 300, and they thought I was supposed to wait till I reached over 300. So they had to call one of the study doctors, who told them to let me correct. I blood tested (275), took the suggested dose of insulin through the AP, and by 8:25 AM was 163. I didn't try to go back to sleep because it was pointless, I was good and high and awake. Breakfast. Protocal that day said that exercise was to be about 1 hour after breakfast, but because the cab company ran late it was 10:08 before we all got to the gym and began the exercise.

(heart rate readout device)

(Exercise bikes)

10:08 AM: 247
10:25 AM: 216
10:46 AM: 193
11:07 AM: 174

This time, they just checked once after each of the 15 minute exercise bouts.(and obviously, I did not eat a snack before hand, because I was high) The heart rate monitor worked just fine and I could see my HR as I pedaled.

Dance party! (these are the best people. seriously. they experienced my pain right along with me. And the music helped to get my HR up there.)
Back to the research house, where my pre-lunch(12:29 pm) checked in at 193. Post-lunch: 236. (3:59 pm) At that point, it was officially the end of the study and the tech person gave me instructions about setting up my account on Diasend. (to send pump, blinded cgm, and meter) I am also supposed to sync the Fitbit to the app once a week, to send that data. Another study doctor showed up and removed the pump, and I put my old pump back on. Gave me a packet with pertinent log-in info, and telephone numbers to everyone. The study coordinator then gave me cgm sensors, the study meter, 300 strips,3 cables(to download data), the Fitbit, and the blinded CGM receiver. Loaded me up on snacks for the road and I then drove home. In approximently one month, I return for the closed loop admission-and will see how well the AP controls my bg. It's going to be slightly nerve wracking for me because I'm trusting a machine, but at least the protocol is in place to be watching me 24/7 to make sure I don't go to far in either direction.

Team Artificial Pancreas,forever.( I will probably save this can forever..I find it interesting that all their Coke Zero cans said this.) Until we meet again.

A New Diagnosis

On Monday, I awoke,took my child to the baby sitter(as schools were closed for the Jewish New Year) and came back to a voicemail on my phone.

"call us immeadietly." (Signed, Genetics Dept.of University)

I called. I knew in my gut they were going to tell ME I was the reason for my child's genetic condition because that is how it is,my husband is the largely healthy one.

"we got the results back...

Breathe.

And you also have the 17Q12 deletion."

Well, joy. And does this mean I have MODY as well?"

"yes,but we need to communicate with 

Dr.S (adult geneticist-it was J's genetic counselor who called me) to formulate a plan of action that will also involve your endocrinologist."

I didn't cry this time,because frankly it makes perfect sense that the weird health stuff that has happened all my life beginning at babyhood when no one could figure out why my head was so large and I only wanted to sleep,not eat.(many tests later) was in fact related to a genetic condition. Or why my spine is not straight,or the tinnitus that began when I was 12 years old. Or why I've gotten chicken pox, Shingles,and Lyme disease in my first 20 years of life. Or why the diabetes came on over 6 months and the magnesium issues as well.

New Diagnosis: 17q12 micro deletion. Magnesium issues from that. Not Bartters Syndrome. Probably not type 1, because it specifically encodes for MODY 

5 diabetes. Like,basically impossible to have type 1.

Basically the news feels like I'm a freak of nature,because this happens at the very basest of levels. I don't know if this effects lifespan (I'd like to think it doesn't but who knows) and the MODY 5 puts at risk for liver and kidney dysfunction. I guess the good news is that I have above average IQ, it hasn't effected that but can it? Also the chances of passing it on to offspring are 50/50.(hence the reason J has it,& it affects people different ways so that some people cannot live independently.) I'm already being monitored by a kidney doc,but there will be a whole new care plan with aspects of what I might be likely to get.(Different from J's plan,as they don't know what his level of functioning will be as for now he has none of the physical problems.) My Endo will also collaborate with the geneticist as it may be possible for me to take some oral medication with insulin,to lower the amount of insulin I take.

And that's where that's at. I'm still kind of stuck in the disbelief stage. (With all of this) And dealing with the knowledge that this was no random error that caused me to give it to my son.

Diabetes still sucks & these waters are uncharted.(read: mini identity crises if I no longer fit in the type 1 world)

Wondering "if"

 My head knows it's impossible..but on days like today and yesterday,my heart whispers "what if? What if you weren't type 1? What if pills were a possibility? What if everything you ever thought you knew about diabetes control is just another option?"

I ate 200 carbs yesterday. 150 today. My sensitivity is through the roof.(Mostly that is because I was doing a grueling flea market prep,actual 7 hrs at flea market,& then carting the remainder home.) Hot weather,& exercise have serous effects on my bg. 14 units as a TDD is hardly a cure,but it is 10 fewer units then I'd normally need for such a day. It's not the first time I've needed much less insulin,I have these times when it's actually under 10 units. I think that if I tried something like Invokana,I'd be even more sensitive to insulin.(I'd consider that as a good thing..the more sensitive you are,the less you need,& the less you have to worry about extreme hypoglycemia.) As someone who had one such unpleasant event last month,and who barely avoided the ER I am a fan of the less IOB,the better. 6 units on board when you are as sensitive as I am is not a good scenario.(Never "double correct" for a 340. It was scary,as I couldn't eat enough to stop the drop.) I really want to discuss starting Invokana with my Endo.(Along with glucagon scenario plans. Mini Dosing in adults doesn't do enough. )

Bottom line is,I want my D to become more easily controlled..it's not that I consider insulin to be evil. It isn't.(you need what you need) Low carb does that but I love my carbs,and would have no energy on such a diet. Yeah,I do eat low carb some meals but I balance it out with the others.

 

Bottom line is..your diabetes may vary. And you need to find the best option for you.

One Thousand Tomorrows

I use to think

That 1,000 tomorrows would make up

For 52 bad yesterday's.

Ah,hope springs young,& eternal

Years pass

A thousand tomorrows will soon be today

And turn into yesterdays.

Normal numbers don't save me

From the darkness of the place I'm in.

I don't see the light.

I don't see the hope.

I don't see the promise of tomorrow.

There is only today,& living the pain.

(And the further spiral of the numbers.)

Yesterday probably even wasn't that bad,because yesterday I was at least breathing.

And my yesterdays with diabetes now match those without.(16.5 + 16.5)

This also I know

That a bad today

Keeps you from feeling the promise of tomorrow

And that it doesn't have to be permanent thing.

(But like diabetes,depression just kind of sneaks up on you,smacks you on the head,and delivers a boatload of other difficulties to keep you in that place. And I'm tired,& probably my thyroid levels are completely whacko and I'm fully aware I need to go to my pcp and get back on something. I know. I'll get sorted out.)

One step at a time.

One today at a time.

Turning into tomorrows.

FFL: Complicated

Ten years ago, I got on a plane and went to Florida to hang out with a bunch of diabetes people. I was getting to know (IRL) the people that had previously lived 

only in my computer.(aka the Children With Diabetes Chatrooms) There was no Adults With Diabetes support. I volunteered to be a chaperone at the Teen Dance,which amounted to me standing outside the door and making sure no parents snuck in.(That was how I met Joe S.)

2015. My ninth FFL. I am kind like the shy little sister that hangs around and that everyone kinda knows of,but not really knows,because I am a shy introvert and public speaking doesn't happen much. The thing about introverts,they have just as much insight into things as the extroverts but nobody gets to hear it much. I will say that I have become more outgoing but still most people don't remember that they "met me" the year before. (I also must be a sucky conversationalist.) The regional (2004)CWD conference in DC,the very first one I went to, I didn't say a word I was so shy.(I think I have improved from that.) 

2.5 weeks ago I had a laparoscopy,& spent 8 days recovering from that. On Tuesday,(the 7th) the hubby kid and I flew down to Florida, getting to the hotel about 2 pm. Spent some time at Hollywood Studios but by 8:30 pm we were all pretty tired & went back to the hotel to crash.

Wednesday was amazing..the one Masterlab session that I went to was like a "play" of diabetes,emotions,and how it related to our lives. And we read out loud what we had written. It was incredible and there wasn't a dry eye in the room. After that I had to go to a Focus Group with my friend(for Omnipod) which was a chance to tell them what they needed to incorporate,AND pick up some Disney Dollars for participation. The afternoon was spent crashing(nap.) And at 6 pm,the exhibit hall opened and a buffet was served. It's always mass pandemonium in the exhibit hall,but still fun.

On Thursday, after dropping J at childcare my friend and I did the Celiac screening,& then went to the retinal screenings. They had a lot of trouble with their equipment on me,& had to do everything about 20 times.(because of my fake lenses) And someone before us was receiving some very bad news so Dr. Ben had a lot to handle with that family(& making arrangements for treatment). It was a couple hours later,& we had moved into the last "consultation room," and the medical student was telling me she wanted Dr Ben to take a look at a couple of things and my brain was going straight to "I'm screwed" while trying not to have a panic attack waiting for Dr Ben. Dr Ben came over to the computer,went through the tests,& said he had to run one more something looked swollen.(come back in 20 minutes) I went and gulped down some lunch from the buffet and was back in 20 minutes.(hubby had picked up J,eaten lunch,& gone back to the room) Dr Ben took me back to the primary testing room,took several more photos,& then showed me the photograph of my left eye. Said photograph looked like an aerial photo of Mars..with one large black,crater looking area.

"You've had a bleed. Here is your macula,if the bleed is in your macula it can permantly affect your vision. It's not in your macula,comparatively speaking the bleed and the macula is like the distance from New York to Chicago. It's not an active bleed-you see the little yellow things around it? Those are exudates and it means that the body is trying to heal itself. It can heal itself in a few months. Better control will help."

"Is it purely diabetes related?"

"Yes,500's did this. 300's do not."

One 500 can do this..

(& I'm not perfect. I've had a few 500's in the past few months. But I've lowered my a1c by 0.8 in the past 1.5 months. I am getting where I want it to be.)

I don't believe what I am seeing,yet the evidence is there. I've had no eye issues,no hint of a problem between last years exam with my opthamogist and today.

"I didn't know it could happen that fast."

"Yes it does."

Tears take over at that point,and I ask for a hug before stumbling out the door to seek a bathroom to unload my grief in private. My first real complication,here to stay. I don't feel like doing much of anything that day,like the black crater on my eyeball just took over my heart as well. Things go on though.(with a banquet that night)

The next day,there's a session on complications that my friend literally drags me to,upon threat of everyone coming to the hotel room to bring the session to ME. That was what I needed to hear though. So many brave stories were shared,and though I'm not sure I really know how to convince myself it's not my fault it helped to hear that no matter how many complications we may get,it doesn't mean our lives were without purpose.(plus,we are managing an unrelentless disease 24/7/365) Remainder of the conference, I cried on a few more shoulders and had a few more heart to heart conversations and spent two days doing theme parks full throttle before going back on Monday.

Tuesday: surgery stitches out.

And Wednesday came. I was there,bright and early for my opthamologist appt. They moved pretty quickly,with the standard medical questionnaire, eye pressures, charts and drops and about ten minutes later getting to see the doc.(I had J with me as the babysitter is on vacation this week) My Optho took his standard 15 seconds per eye,everything is fine see you next year..

Wait a second. Stop everything.

"Are you sure? Because I had a screening at a diabetes conference,& they said there's a spot of something in my left eye."

"I don't see anything. Who did this "screening", anyway?" (The condescension in his voice was oozing from every pore.)

"Children with Diabetes conference and I think it was a NJ school of medicine with the eye screens?"

"What did they tell you?What kind of screening was it?"

"That its a bleed and it needs to be monitored and it should go away. And I should see my opthamologist for it."

He takes another look then,with mirrors and bright lights and look up/down/sideways. 

"Your retina looks fine. I am seeing a small bit of blood,a speck really. I think it is neovascularization. I think a retina specialist should take a look at it though."

"Is that NPDR?"

"Yes. Normal,really, for those who have diabetes. I don't know if this is diabetes because it looks very stable and usually it is in more then one area so I want them to take a look at it."

Impression: Oh great,it could be years old and you are just now catching it. Incompetant much?

"This "diabetes conference"...have you gone several years?"

"Yes." (I can see where this is going,he's now feeling insecure about missing this and is trying to figure out if I am second guessing his skills.)

"Well,we will see you next year. And by the way..tell me next time someone sees something in your eyes,hmmmm?" Side friendly pat on the shoulder.

"Yeah."

Yep, I'm done with this guy. Arrogant condescending incompetent charmer. I may just see what retina guy has to say and either just go to him,or find a new Optho.

It's been an exhausting few weeks. I now have a whole lot of respect for Dr Ben and zero for my ex-opthamologist,I feel belittled,confused,and more then a little T-d off at what my Optho had to say. No respect for anyone else(who hello,caught your mistake you idiot) and no respect for the dr-patient relationship. He did manage to completely erase any residual "should I switch" doubts. I'm still processing the sadness from this diagnosis but it helps to have heard that NPDR is not a "done deal" toward blindness,the majority of T1's do get this.

Surfing the Sugah Wave

The best part of Endo appointments is after they are over..and the next three weeks are squeaky clean,filled with promise and hope and resolve..a diabetes clean slate.

That day has come and gone for me.(almost a month into my current "journey.") In the meanwhile,all the promises I made (email CDE! Prebolus! Eat more green things! Do not stuff Twinkies into mouth at midnight and "forget" to bolus!) are a distant memory, I really suck at diabetes improv projects. But then I dropped a pump,& another threw 5 consecutive cartridge error alarms and had to be replaced and my blood sugars were a grand and unmitigated disaster and I needed a breath of fresh air so I dug out my Omnipod pdm,traded supplies for some pods,and gave it another go.

And these have largely been my blood sugars ever since. That's 24 hours where I might briefly go above the high line,versus a daily journey of 100-360 blood sugars. For the most part prebolusing isn't even necessary.(except breakfast) Every thing I do works. (Which is super weird) I think some of it might be 

from pod placement..using my arms because the other places have scar tissue from so much use and it's been good to have that fresh territory.

In the meantime,I had a repeat a1c done this week(diff doctor) and my a1c has dropped (!)0.6 points so it looks like it might be possible to make significant changes by next appointment.(in August)

I have enough pods to ride this wave to summers end and if I break the 7.0 barrier, I am going to talk to my Endo about another RX. I never thought I'd be doing this but right now,this is exactly what my body needs..a break from the rollar coaster. It's also helped immensely that I got the "Sugar Surfing"book and have tried to implement some of those suggestions.

I'm lovin' it. (Well,as much as that's possible.)

Project: Genetics

I've come to the conclusion that I have "Left-side-of-the-body-itis",having had to have had 2 cataract surgeries,1 L.arm ulnar nerve surgery,1 tonsillectomy, 1 C-section, 1 L.eye muscle surgery for double vision,& I'm not entirely sure where the pancreas really is in me but I'm guessing it's toward the left. Also 1 messed up Lumbar Disk affecting strength and motility on the Left Leg although that has much improved,& I'm now in matenence phase (chiropractic) for that. However,I now have a messed up ligament in my left shoulder and it hurts to do anything with it. I told my chiropractor today that I wanted to get it evaluated and what followed was an exam,an adjustment,& a torture device known as traction.(basically a head vice) I was supposed to stay in it for ten minutes(at 10 pressure) but after five I started dry heaving,getting dizzy,and having a pounding headache and no more of that could I stand. He asked me to do three sets of things to make sure I wasn't stroking out(it can happen when you are manipulating the carotid artery),which I wasn't,but it took about ten minutes to recover enough to go home. I then had a headache from heck for the next two hours and horrid nausea. And it didn't help my shoulder pain either. I think this is going to be a slow process,& a headachy/nausea/dizzy one at that as we try to get a pressure I can stand. He told me to roll up a towel to put under my head to help release the pressure,& a specific lifting technique to use. I might have a pinched neck disc as well,if things don't improve we will get an x-Ray. And bonus props for calling me later to make sure I was still alive. I like my chiropractor,the techniques really do help & he knows what he's doing. Would far rather go through this then spine surgery. I'm just wondering how many other left sided things can fail though.

In other news,my Endo does think I have MODY 5 but it will be awhile before I can get specifically tested for it...I am negative for 17Q12 chromosome haplotype deletion but that doesn't completely rule it out,& it's much more expensive and has to be tested through a genetics division.(next appt.: August 28) It is what it is,no rush.

Day 6: My Favorite Blog Post

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)

Dear Beanie Baby would be my very favorite blog post of all time.


Because in the beginning, it was this.



Followed by this..



And by ten weeks, it was apparent that this was a human being. (favoritist photo of all time, as it looks like he was smiling and waving at me. TEN WEEKS,and it got much more real.)



Grow..(and blow bubbles)


Grow..


Almost ready...



And baby!


It was an amazing process,and despite my inability to make perfect the glucose levels in my blood at all times..babies are scrappy little things and most will get through it just fine. (Although going through for an entire 10 months with not one number in the 400-500's was a pretty miraculous thing too.) One of the perks of having diabetes during pregnancy,they did ultrasounds really frequently.

(and my computer is doing wonky things this morning, so please disregard the weird links that lead to pictures. Only link should lead to my original blog post)

Day 5: A Day in the Life of my Food Choices

Today’s topic is Foods on Friday.  Taking a cue from Adam Brown's recent post, write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way.  (Thank you, Katy of  Bigfoot Child Have Diabetes for this topic.)

Welcome. You have now entered the No Judgement Zone.(aka it's so good to be with friends,although if you are a telemarketer intent on immeadietly sending me a email of the latest super food product please don't. I don't really need it. Also I hope this post makes you feel better about your own food choices because we have all been there & some of us stay there.)

Breakfast:

Usually 2 packs of this,with milk. Sometimes a muffin,or two cereal bars. Sometimes 2 waffles with SF syrup.

Sometimes a couple eggs(hard boiled or fried)

Diet Coke #1 of the day. 

Lunch: Diet Coke #2

   Cheese and lunch meat sandwich.

   Some sort of chip/salsa/dip combo.

   Sometimes a banana and yogurt.

   Sometimes  leftovers.

Snack: whatever I'm in the mood for,

Chips/lunch meat/cheese/pickle/chocolate/nutritional bar. Diet Coke #3. Water. Juice if low.

Supper: some sort of veggie

             (Cooked or salad)

            Some sort of meat

              (Seafood,ground beef,etc.)

            Frequently pasta

               (I don't rise like I do on

                  Pizza or rice.)

             Caffeine free tea or water.

Dessert(ice cream) if we're in the mood. I don't have a very exciting diet and I know I don't eat enough fruits and veggies so I will try to get those super-packed veggie juices to supplement. (along with probiotics and multivitamins)I like most veggies,but I rarely eat fruit.(with the exception of bananas) Summer time I definetly get more nutritional foods in.

Late Late TV Snack: CVS nuts..wasabi and Buffalo Ranch Almonds being the absolute bomb. I also like sunflower seeds,peanuts,& popcorn although if I'm low some candy is liable to enter the picture. The lower the carb,the less chance I'll wake up 300.

           

D Blog Day 4: Changes

Today let's talk about changes, in one of two ways. Either tell us what you'd most like to see change about diabetes, in any way. This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?





In 1924, what did it feel like to receive an expirimental drug that had only been tested on dogs-was it scary?


In 1939, were parents already sick of this "in five years" line?


In 1943, did they dream of a time when their child could be like any other child and eat the piece of birthday cake?


In 1953, were they ever afraid to go to sleep, wondering if their child would have a bad low overnight?


In 1964, did they dream of a device that would tell them the current blood sugar level..day or night?


In 1972, did they ever want to smack the food police?


In 1981, did they ever think that diabetes might still be around, 34 years later?


In 1990, was it social suicide to wear an insulin pump?


In 1995, were pb crackers and oj the first thing people tried to cram down your throat during a hypo?


In 1999, did anyone else stockpile diabetes supplies for Y2K? (besides me)


In 2005, could anyone have dreamed that the failure of the Glucowatch wasn't the worst thing ever and might just

be paving the way to the dawn of the Continuous Glucose Monitor/NightScout/Artificial Pancreas?


So I wonder..what's next for diabetes? Change doesn't come fast enough but it is coming. (in all forms of diabetes) And that gives me hope, because one day I'd like not to have diabetes, and I'd like for my son to have the best tools imaginable if he were to get it. (gene therapy advancement is not as much on researcher's "to do" list as curing T1) It would really suck if they cured type 1 and couldn't cure monogenic diabetes, although that's a whole other can of worms that makes no sense worrying at at the current time. T1 isn't going to be cured any time soon.

Day 3: Cleaning House

Yesterday we kept stuff in, so today let's clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?

(Clean up,clean up,everybody everywhere

Clean up,clean up,everybody do your share.- Favorite of pre-K teachers everywhere)

  Oh, how I'd love to clean house on all my diabetes junk.

Bin after bin after bin of stuff accumulated from my 'betes life. I try to organize occasionally and find a home for it if I can't use it myself since it does go into a state of entropy fairly quickly. However,due to the lovely insurance companies screwup you will occasionally still find yourself with about a thousand backup syringes and ONE PUMP SET left due to stupid Edgepark just ignoring your refill order for 17 days,necessitating a panicked call for more. That seems to be part of the mental "joy" that diabetes brings,and as much as I'm ready to ship every piece o'D crap to the incinerator,getting rid of that mental burden would be a greater joy. 

It's there. It's there all the time,and I think that it would be so awesome to clean house both physically and mentally of it all.

Keeping it to Yo'self: Dblog Week Day #2

Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won't tell them.) (Thank you Scott E of Rolling in the D for this topic.)

Good rule of thumb: if something could potentially damage the reputation (or otherwise) of another human being, then you have no business sharing it on the 'net. So, about that non-existant reputation that I have...well, I hope its fairly intact. You won't ever see drunk photos on here because there are (thankfully) none, but sometimes I wonder if I've kept my blog really that pristine clean.


I try. I try not to post anything embarressing to those that I care about. And there are things I don't share, because I've promised my husband I would not do so. Its for his comfort and peace of mind, because sometimes I have a hard time not oversharing. I don't have a problem telling you my a1c, or any other number. But the one thing that I rarely share, and its more of the case that I just never felt that anyone else could have this issue to the extent that I do..is my fear of hypoglycemia. It strikes hard, and it strikes fast, and although the last time I ended up on the side of a dextrose drip has been years I still think that it may kill me someday. So what does this mean? It means that I usually under dose, and deal with hyperglycemia just so that I won't have to deal with the low. (when 1 unit plus exercise can drop you over 100 points you just aren't that fond of going by the CDE/Endo's recamondation) I really, really, really, really want to stay alive for my family. And yes, I have a Dexcom, and a pump, and can adjust things and test, treat, as needed. But if you've ever gone from 70 to 33 in 15 minutes (requiring glucagon), had lows that took over 120 carbohydrates to treat, seen numbers under 20, or shook semi-conscous in the arms of an EMT you cannot forget that. I think its kind of a post-traumatic situation that you can't ever just feel ok about. I don't under-dose to lose weight, I under dose to stay alive. My endo does not understand this,given my access to modern technology. ("You have a Dexcom. You don't have to flip out. Take the recommended dose.")

So I struggle, and probably will until there's some sort of Artificial Pancreas that's better at this numbers game then I am. I'm not sure if there are any mental health professionals out there that understand either, I tried that too. They didn't understand the complex relationship with the medication that is never consistent in its dose age needs. I don't know what the answer is,but every day is a struggle between what I know should be done, and not wanting to deal with the resulting hypoglycemia.

I Can...(Say Yes)

In the UK, there was a diabetes blog theme of "I can...” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could? Or what have you done that you've been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)




(I save things.This is no secret,but if you're looking for obscure insulin pump promo posters from the turn of the century, odds are I have them.)

December, 1998.

"You can't be in the military."

"You can't fly a plane."

"You can't be in the FBI or police or anything along those lines."

"You can have a child, and odds are that child won't have diabetes!!"
(quite frankly,it wasn't really on the radar at the time and the added bit about passing it on
made me that much more annoyed/freaked about it.)

"You can't eat what you want, when you want...you must eat three meals and two snacks every day."

"You can't go barefoot on the beach."

"You can't drink anything with sugar in it unless you're low, and you must follow your meal plan."

"You can't go without your medical alert."



Back in the day, and even still, the switch to an insulin pump was a very big, big thing. Because suddenly all those things that they said you "had" to do, gained a small amount of wiggle room. Suddenly, some people could do those things..and then most people could do those things, and it was a brave new world of pump wearing, barefoot baring,eat whatever you want daredevil PWD who were doing all this and rocking their respective sub 6 a1cs. (even some T1's in the military) And you wanted to be a part of that.

So you said yes.

You said yes to that switch from Regular and Lente to Humalog and Lente.

You said yes to that switch from H&L to the pump.

You said yes to switching to a new meter.

You said yes to starting to read diabetes blogs and websites and getting to know others with the disease.

You said yes to getting a CGM.

You said yes to being an active participant in your care-not just letting your doctor telling you what to do.

You said yes to plunging ahead toward your dream job, whether or not it worked out.

You said yes to having a baby, & letting your heart walk around on the outside forever and ever.

You said yes to the prospect of a brighter, diabetes-less, tomorrow.


Because I see others doing those things, and diabetes never stole that from me.(even if their path isn't my path, its not a diabetes thing)

Better

"I want you to promise me something, Heidi."

"Sure." (ANYTHING. Dear Lord,what am I doing,what am I even saying? Stop.Stop right now before he asks you to get your a1c to 4 & you agreed to this? No.)

" I want you to promise me that you will fight for you,to not give up on this, to not give up on yourself,you need this. You are worth it. And I want you to live a good long life, with sixty more years."

Yes. Yes. YES. Of course I was going to agree to that, that I was going to plow forward, to keep up the fight, to continue the struggle to keep up my magnesium issues. Never a question. As I hugged my nephrologist goodbye that day, it was never an issue that I was going to not try.

And here I am, 12 months later,with his colleague,who is about as interesting as a block of wood. Also said colleague is not very knowledgable about magnesium deficiency and gets heart palpitations if my levels go below 1.2. Also we don't have conversations,we have one sided monologues where he expects me to obey without question. Also I don't think he cares about me as a person,at all,because he doesn't even bother with small talk. I miss my old doctor. And I know that better is out there,but since I've been spoiled with excellent I probably won't be able to find it.I wish I could though,because I know my old nephrologist would want that for me.

Gahhhhhhhhh.

Turn Around

The past few weeks have been..hard.

Depression and Anger. That's where I am right now,after my beautiful 3 yo was diagnosed with 17Q12 micro deletion syndrome.(in layman's terms,it's a chromosomal issue that happens during development. It didn't stop there,no,because it also means he's at risk for kidney cysts/dysfunction, autism,schizophrenia, seizures, and Maturity Onset Diabetes of the Young type 5. I'm not going to tell you that every item on that list doesn't makes me want to cuss up a blue streak and punch something,because I do. He doesn't currantly have any health issues but things make a lot more sense now..the low muscle tone,the jaundice at birth,the developmental and cognitive delays. Suffice to say the internet filled me in on the less rosy parts of the picture that the geneticist phone call did not.(the geneticist made it sound like just a slight 

form of Autism. We go next week for a sit down-hash out affair). Good thing is,he is currantly healthy but I just feel so woefully unprepared on dealing with it all.) Maybe it's not as bad as I imagine but my brain tends to go to worse case scenario,that's how I cope. It also means both parents 

have to be karotype AND 101 recessive disease tested and I'm currantly living in a form of Hades waiting for my labs to come back from that,because I might not have T1 diabetes,I might have MODY diabetes.(hence the genetic influence) 

One thing I know,it's something that excited new parents rarely think about..that that perfect little bundle of joy might have a genetic issue. I guess it feels like a part of me has died,because I'm just so worried for his future and who will take care of him if he needs it.(which the geneticist says most people are self sufficient but again,I go to worse case scenario). And if I have issues,well that will rule out having any more kids. 

(I know there's a lot of good people out there who I can lean on for support,and I thank you for that.)

Unconferencing the Ve(gas)ness

This is not a story about a group of people who went to Vegas and did whatever you do in Vegas. Because while some of that certainly happened,(High Roller-never again) the reality of those
few days went beyond that.

And while you are probably expecting to get a blow by blow account of the lovely warm fuzzy moments of what all happened (at said diabetes conference), that can't happen either. Solemn vows
were said (over unbreakable 100 mg/dl's, only not mine, because at no point was I that low) to not repeat/tweet/FB/spread on social media the happenings of said conference, to respect those
individual's privacy/feelings that are not so gung-ho about their words going all over the Internet. And I get that, kinda,and I agreed to that, but to fully digest what all went down I am
writing it (offline,in journal) down for ME and only me, (just the tips/general ideas,not the intensely private thoughts)because I need to remember what was said before I forget it all. Almost 2000 years worth of d-experience, packed in one room...it was
pretty astonishing. It wasn't just sitting at a table and hearing a speaker droan on and on, there was life in this conference. (thereby different from every other conference I have ever
attended) Not that other conferences haven't been awesome, in their own special ways, but this one was about connecting.

And in a way, that muddy grey puddle of diabetes came ALOT clearer. It will never be pristine Carribean clear, but you couldn't help but to have learned a thing or too, nor too have (waves
hand) unleashed a tear or too, along the way. It's ok not to be perfect, it's ok not to be anywhere close to perfect, the only thing that is NOT ok is to let it steal all the moments of
goodness from this thing called life because it most certainly does try to do that. Some of the conference was particurally difficult, some of it was funny, but all of it was good for me.
Just for a moment, I could forget about chromosomal deficiences and eat, live, and breathe diabetes for 2 straight days. (fun, nu?) That it was mentally exhausting is no secret, but it was a
good kind of exhausting. I wish I could give it to EVERY struggling PWD out there.

And I'm so grateful for everyone who made it happen. Thanks to you, my D-Love Tank is full and my FB friend list has grown exponentially.

Four Things (meme)

1. Four names people call me other than my real name: 

Adel-head-brother 

Peggy-brother

Heidi-Who(my dad)

Splenda(the hubs)

2. Four jobs I’ve had: 

babysitter 

Childcare center worker

Retail Distribution Center worker 

3. Four movies I’ve watched more than once: 

The Sound of Music(#1)

Mary Poppins

A Man Called Peter

Chariots of Fire

4. Four books I’d recommend: 

Little Women

Sweet blood

The Kid who ran for President

The Kite Runner

5.Four places I’ve lived:

Virginia,Mississippi,Virginia,Virginia,Virginia,Virginia,and Maryland.

6. Four places I’ve visited: 

Copenhagen, London, Niagara Falls,Hawaii

7. Four foods I prefer to not eat:

Squash,Sushi, Lima beans,cranberries.

8. Four of my favorite foods:

Chocolate

Ham

Anchovy pizza

Mashed potatoes

9. Four TV shows I watch: 

Downton Abbey, Greys Anatomy,Once Upon A Time, Red Band Society.

10. Four things I’m looking forward to: 

Vegas! Tomorrow, Friends for Life Orlando, Tslim Dexcom integration,Springgggg.

11. Four things I am always saying: 

It is what it is.

Would you like to do as Mommy asks or would you like to go to bed?

Splendid dreams.

Come here right now.