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.

The Coldest Night

Last Friday, I took J in for an head MRI..which the developmental pediatrician ordered(can at least tell if the brain anatomy is normal and rule out that as a cause of his delays). It was a bitterly cold morning,-20 is so not my cup of tea to have to deal with early in the morning but J was fine with being woken up at 4:30 in the morning.(what can I say..he's his Daddy's son) We got there about 6:30,registered,and went back to the Children's Dept. There were two nurses getting him checked in,etc.,and then the nurse practitioner arrived to explain things,have me sign a consent form,etc. Being a 3 year old with sensory issues meant that nobody was going to touch him until he was sedated,& since Benadryl makes him extra hyper he couldn't drink juice with that in it. So all four of us adults had to hold him down while the NP put in an IV,& wait ten minutes for it to work. It was very harrowing. Procedure took about 45 minutes,and he slept for about 45 minutes in recovery. He did great. The nurse said he definatly made their list of The Top Five (Energetic,Wild) kids ever and it was a wonder if I got anything done. I told her that I didn't,unless he was at school. (To put things in perspective,they've done thousands of procedures) I've long suspected that

my child has the energy of five other young children but to hear someone else confirming said fact made me feel like not 

an overreacting mother. Of course I love him no matter what he's like but it feels

rather isolating (playgroups and church Sunday School are just straight up unmitigated disasters, I don't take him anymore because they aren't fun little events where mothers talk and babies play..mine would rather run into the street,parking lot,etc.) because no one in my circle has a child even close to what mine is and they don't get it. YOU GET IT is what I wanted to say,but didn't. They also told me I looked fabulous and I can count on one hand the number of times anyone other then my hubby has told me that,ever. Nurses rock,ya'll.(Everyone needs to be told they look fabulous at some point in their lives,even us ugly people) Anyway,it was empowering to me during a stressful situation. My boy woke up,asked for some juice,and fell asleep with his mouth open holding his graham cracker on the way out to the SUV.(it was cute and funny) By the time we got home,the sedative had nearly worn off.(it was fortunate that just one sedative had done the job,& he was back to normal the rest of the day.) Now we just have to wait on the results.

In Defense of Kids(Everywhere)

Something happened this week. Something that ruffled all my Mama-Bear feathers, and got me out on the warpath. Something that hurt like the dickens and yet is just a small something in the whole parenting a child,probably not even a blip on the radar of a parent of a CWD. But it was a something to me.

Monday, J got in the bus in front of our house, and at 11:30 the bus brought him back. And as the aide was unbuckling him from his seat and he was excitedly running/squirming all over the back of the bus,the aide said the words "come here,you sweet demon" and laughing,like it was a joke. Quite frankly I don't think on my feet that well and loathe conflict,I was hoping it was a slip of the tongue. Well I got J from the bus,and Tuesday was a non-school day so I couldn't talk to the aide about it,but Wed I let her know what I'd heard and that it was not appropriate to be calling my child and I would appreciate it if she didn't,in the future. That went over about as badly as cussing her out would have.("I didn't do it! You heard that on another bus! I would never do that! I've been doing this for twenty years!") No,it was the after school bus,and yes,you were working that day and was the only aide on the bus? Ok. I know what I heard,have a nice day,bye. People do not react well when they think they will get in trouble. Clearly having a shoutout match on the street isn't going to solve any problems. I am going to go further up the chain of command (I think they should put a recorder in there or something) to make sure employees DO get that talking to about appropriate speech. Probably nothing else I can do.(clearly,an apology is never going to happen. And even if I talk to the bus company everyone will just deny it and make me out to be the over-reacting parent.)Mainly it's just 

drives home the fact that some people are going to take advantage of your kid,special needs or not,he can't understand what you said nor can he tell Mommy so you get off Scott-Free.(He has a speech and cognitive delay,for which he is getting school services.) Everyone I have dealt with with EI and the school have been great so far,and very helpful in working with J but I guess there's always going to be that one and that's what makes me scared,does other abuse happen and never get reported? I sure don't trust that aide anymore. Or the bus driver,who has very selective hearing.)

(no happy resolution to this one..except maybe if the aide could win the Powerball and go into permanent retirement. But there are others out there who have no business working with kids. The school system makes a big deal about safety and yet doesn't implement the things that kids need to stay safe. That's what terrifies me.)

Be(ing) Me, Bravely

So much happened in 2014, that I didn't have the time (or inclination) to blog about. My blog has turned into a ghost town, with the occasional sighting of human life. (like, once every 5 months?) But really thats ok, because its better then the constant angst of one thing after another going haywire in my life. 2014 was the year of REDISCOVERY, and really, you'd have thought by this point in life I'd have my life plan pretty well mapped out, well, no. 

  Major highlights: getting baptized, joining the church in August, joining MOPS organization, getting my 10 year Eli Lilly award, having a .6 drop in my a1c, getting my back semi-straightened out by the chiropractor. Seeing my boy grow up from toddler to now chatty preschooler!(not in preschool yet but he just started Early Intervention services with the elementary school.)

  Major lowlights: getting pericarditis/flu/hospitilization/ spending the rest of the year on magnesium infusions. (pretty much a non stop bad health spree).

  But all in all, I have hopes that this year could be better. Regarding my magnesium issues, and after exstensive record keeping I feel like there is life at the end of the tunnel. I have figured out how much I need on a daily bases, and the right blend of various forms of magnesium to make that happen without being too much for my intestines. (kind of. Its a work in progress.) I have learned other ways to get magnesium in (foods, through the skin). It (level) will never be high but it may be enough to live without IV'S. (non fun fact: magnesium infusions are always given in Dextrose 5, which always jack up my blood sugars and the nurses wonder why. Why d'ya think?) Oddly enough, the foods that are the magnesium powerhouses are also the powerhouses for potassium, iron,Vit. C, etc. so I am eating alot healthier these days. So I'm currently testing my theories of "how much do I actually need" out, which is a bit nervewracking but I'm taking it by degrees(2,3,4, 5 weeks out) before getting IV's. (before discussing this with my nephrologist, who I don't really like or feel like he knows anything more then I do but kind of need him to write the orders)I feel very fortunate that my veins have held up, but I want them to start to heal from all the scar tissue and that is going to take awhile.

 I've also decided that random weird health circumstances seem to happen to me, more then most people I know and if I can't "have it all", then what I choose will be to have another child before that becomes an impossibility. I'm not going to get into all that via this blog, only to say that the a1c is perhaps the easiest part of that particular equation. Young J is now 3 years old, and so many things just feel incomplete with just one kid. (Your Experience may Vary) If that means putting nursing on the back burner for awhile so be it.) And things invariably get considerably less rosy, and more risky the older one gets. (diabetes non withstanding)

     So, in recap, I want 2015 to be a year of healing...a year of support, a year where I can begin to redream my dreams and a year of better control D-wise.

Dear Santa

Dear Santa,

It's late,& my tired brain is running on East Coast brain in a West Coast world so I shall attempt to be brief. All I want for Christmas is a cure,but in the absence of that, a sparkly Tandem Tslim/G5 Dexcom duo would get my heart pumping. Or Afrezza,(inhaled insulin)which I would utilize when I had a high that I wanted to get down very quickly. Or mini-dose glucagon,which would also be shelf stable & a one step process. Or a mn Artificial Pancreas that would keep my blood sugars on a much more even keel.(been there,got the tshirt) Or a test strip disentegrator...or a 3D printer that "prints"test strips. All of these are very much in the pipeline,& of especial interest to myself. I don't expect a cure,Santa,& quite frankly I'd rather have answers to my magnesium problem but fixing the blood sugars to be more like that of a mild type 2 elevated bg,well that would be pretty awesome in my book. Not to trivialize their difficulties but as a person who sees 250+ at least once a day,I would love to have that problem. Pancreatin' is hard,yo.(not to be confused with procreating)

Anyway,that's all for now,Santa. Chocolate is always welcome,but none of that crappy sugar free chocolate for me this year,thanks. Go real or go home.

Love,

The Impossibly demanding,difficult,& perpetually on the Naughty A1C List Heidi

A Trip to the ND

 Yesterday was a wild sort of World Diabetes Day.

I woke up early,participated in the 24 hour Twitter WDD chat that was going on. Blood sugar was flat in the 170's. Took J to the babysitter, prepared my handwritten log,ate and bolused for a bowl of oatmeal, cancelled my Chiropractor appt.(which is always a Friday morning deal but I was feeling overwhelmed) and made sure I had all the things I needed for a long day on the road..then I drove to my Endo appt(scheduled for 10:30). They were running behind,& the waiting room was pretty full. As always, the assistant did weight(up 2 lbs),blood pressure, a blood sugar(322,yeah I should have prebolused that oatmeal) and since I hadn't gone to the lab to do an a1c I payed out of pocket for one on their machine. Endo appt went kind of rough, she didn't like that I just went cold turkey on taking Synthroid but doing a ultrasound to see if anything is going on & another set of labs to her before next appt. She also didn't like my process of ignoring the pump suggestions/frequently bolusing via syringe to make sure it got in.("Either do one or the other.") A1c had dropped by .6 so she was slightly happy over that but not to the point where it forgave my multiple diabetes related trespasses. ("you have to be in the 6's if you want to have another baby.") I'm aware of what's involved, I did have one. Ah,well. It was then off to my next appt of the day,with the ND in DC. I abhore driving in the city, everyone is so rude/horns blaring constantly,barely found a parking garage and every one I asked had no clue where anything was. It's like they live their entire lives within a two block radius. I'd been trying to get ahold of my husband to pick up J by 5:30(no way in heck I was going to beat the Friday rush) and that just added to the stress. Finally found the correct building,went down to the basement office. As I opened the door (with minutes to spare) a strong blast of aromamatic therapy hit both nostrils..and the office was decorated in Chinese artwork. Yes,

It was going to be one of those kinds of places. We went into the ND's office, he offered me a glass of water before we got started(somewhat unexpected..) and went over my entire medical history. First and foremost, I wanted to get my thyroid sorted out. Next, I want to check for gluten sensitivity. He explained a lot of things and agreed with most of what I had to say. He said that in the absence of abnormal thyroid tests with fatigue,adrenal functioning should also be considered so that was added to the list of tests.(full thyroid panel,Vit.D,gluten sensitivity,adrenal saliva cortisol) Rgise are the basics. I can get the normal tests done at a LabCorp nearbye,the others will have to do at their other office in MD) 

The pharmacy will mail me the prescription for NatureThyroid,which is a T4,T3 blend.(we are starting at the lowest dose,because my T4 is tentivly in range)

He recommended fish oil supplementation as well,which I agreed with, (helps the heart health) and Evening Primrose Oil,which I said no thanks to. He's a big fan of fixing everything at once. (Me,not so much. I understands the reasoning but if you start all the radical changes at once how do you know which one doesn't work?) Anyway,we have a plan, moving forward.

Paid,hustled back to my car, paid for the parking, texted babysitter that I might be late,and started to inch my way out of the mess that is DC on a Friday afternoon. Finally got ahold of my hubby who could pick up J. And then I started getting stabbing pains under my rib cage, which continued for the two hours it took to get near home. Blood sugar stayed up in the mid 350's. Thought I might have mono,because my neck glands have been pretty tender for the past couple weeks and mono combined with spleen pain is bad business. Went to the ER. A bag of fluid and some antacids/pain reliever later, blood work came back negative but I do have a lot of sinus drainage/red throat (possible infection

) so I got put on an antibiotic/antacids for that. Drove home,crashed.(near 10 pm at that point) Blood sugar finally down to 89,so a snack was involved.

Way to much adventure for one day.

Project: Naturopath(etic)

Today, my thyroid tests came back normal. Which is all well and good for my Endo appt next week(I appreciate that she emails me back so promptly) but I feel like there's a whole autoimmune picture that I'm completely missing the boat on..and that the two thyroid tests in question are not telling the entire story. My thyroid is a mystery..it has been sputtering on and off since my type 1 diagnosis(16 years) and now appears to be,on. Since Synthroid makes me feel incredibly bad, I take it maybe once a week..and still have an in-range TSH and T4. (I have not yet admitted this to my Endocrinologist.) It now appears that I don't need to be taking it,but there are other thyroid tests that I'm curious about(T3,etc.) that tell a more complete story of my thyroid and my Endo doesn't want to run them because everything is fine with my TSH. However, I still have an autoimmune attack on my thyroid (as evidenced by elevated antibodies) and this will always be the case. I have also learned that low Vit.D is part of the whole Hashimoto's deal and that's something that should be monitored periodically as well. I like my Endo,but those aren't tests that are on the top of her agenda. From the TCOYD conference, I learned so much more about the whole gluten-thyroid-low Vit.D love triangle and though it doesn't appear that gluten is a problem now,it may very well be messing with my thyroid. I'm so conflicted because who goes off gluten just for their thyroid and it's still "iffy"evidence. Yes, I have the genotype for celiac disease but so does 1/3 of the population and few go on to develop celiac. I will not say that I won't ever go gluten free (I love my gluten) but currently it's "wait and see." In the meantime, I have scheduled an appointment with a Naturopathic Doc

(because of Maryland non-licensure laws,I have to go to DC). I feel like they will offer more insight into this mess that I'm currently not getting. Love my Endo, but not all thyroid patients can take Levothroxine. (A fact she isn't understanding. My body hates that drug.)I feel like I should also have a thyroid ultrasound,after 16 dysfunctional up and down years. So, I've made an appointment for Nov.14..and I can't wait to get a full work up for defincies, etc.

I've never been to a ND before,and I'm certainly not going to stop taking insulin(if they ask,I will run far,far away) but I think this will be a good experience..modern medicine and alternative medicine can work together. Neither of them has all the answers. I'm certainly going to keep my Endo in the loop,and not do anything overly rash..but I feel like it's time to start looking for answers elsewhere.

The Facebook Rant

Facebook is an interesting animal.


Especially when you join any sort of health related "group." The larger diabetes related ones, bleed despair and rotten infected dropping off toes and and people who cannot afford their supplies and people for whom the wall of ignorance will never be penetrated.

"help, my blood sugar is HI what do I do"

"help, my leg is streaking red what do I do"

"how do I get my blood sugar down without going to the doctor"

"GMO's are bad, diet coke is bad, sugar is bad,yadayadayada"


When you look at these posts, its very obvious that the biggest problem in America is not diabetes...its the ignorance that millions live with. I am not a perfect PWD...that doesn't exist but how very lonely and isolating must it be to A. not be given the BASICS and the RESOURCES that you need or B.not be involved at all in your care, preferring to "let the doctors handle it" when diabetes is a disease that demands involvement? The beauty of the internet is that it lets patients become more empowered/connected, but the danger of the internet is that comes with just as many opinions on what you should do.(and many people would rather take their neighbor's advice then their doctor's advice)

People need (accurate) basics. People need support. People need a scare-free zone, a place where there are no pictures to make you lose your lunch. People need to take ownership of their own disease, and realize that no doctor can tell you how to get it perfect-perfect doesn't exist. (I also think that some basic diabetes knowledge "files"(from reputable websites)on FB could steer people in the right direction,right off the bat)


In short, people don't need most of the FB groups out there.

Choose Your Own Adventure: The Health Plan Edition

In January,we must have a new health insurance plan. (We received the "Dear Policy Holder" letter yesterday.) This came as no surprise to me,because this particular plan was too good to be true without me personally causing it to go bankrupt. This plan(Coventry) no longer covers Federal Employees,of which my husband is one. Having hit my deductible in March(thanks to that pericarditis infection),the vast majority of the year has been copay and deductible free except for sensors which I still pay 20% on) Add on weekly magnesium infusions at 1K a pop (x6 months)and yeah,that gets really expensive. I'm happy to report that said frequency of magnesium infusions is decreasing..and I think by the New Year I'll be able to maintain adequate levels without infusions. This makes me very,very happy because even temporarily, barring extreme gastric distress, I have a oral replacement  regimen that is doing the job. I also seem to have more prominent veins these days as well. Anyway,getting off infusions completely is really in our best interests because our next health insurance plan will not be covering them 100% like this one has.(two plans ago, I had a $250 copay for each infusion. That was not fun,even on a monthly basis.)  I am fortunate to have health insurance options, but trying to find one that covers diabetes crap plus infusion crap plus

lower cost general stuff makes my non-mathamatician brain explode. (Blue Cross was horrible,Carefirst was decent,

Coventry has been very lovely and I'm very sad to see it go.) May end up going back to Carefirst but I have the next 1.5 months to peruse the choices and weigh the pros/cons of each. Every year all the plans make changes and hike up the premiums.(to boot) And then you spend the first part of the year discovering the places you get supplies/meds from are no longer in network and GRRRR new RX's and whatnot have to be written and faxed and sent via Pony Express to the far corners of the U.S. (That's life in the USA)

To semi-prepare for this,I try to stock up on stuff as much as humanly possible.(RX fills strictly as often as possible to Jan.,which gives me some bumper room that I don't have to get the new stuff straightaway) Probably chiropractic will no longer be covered either,which is why I hope I'm 95-100% straightened out by then. Choosing a new plan is so stressful.(kind of like the health equivalent of "Choose your own Adventure," pick a bad one and you'll regret that choice for the next 12 months.)