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.)

Beyond the Basics: Answers,Delivered

For three years, I've looked for an answer that no one could tell me. Not even my extremily intelligent Endocrinologist,nor the OBGYN,nor the high risk perinatologist that I saw.

Today,I found that answer..on a random Google search.

http://www.redorbit.com/news/health/346710/fidgety_babies_of_diabetic_moms_dont_get_large/?print=true

Brief Summary: in some mothers with diabetes,babies don't get large because the kid is so hyperactive that they essentially block those excess calories and turn out normal weight. Regardless of your BG control.

And reading that was like the floodgates of Heaven coming down and illuminating 

my poor,confused little brain..because from Week Nine of my pregnancy straight through to delivery my Endo would warn me how I was set to have a very,very large baby. Most of pregnancy was spent in the mid-upper 6's a1c wise,& for me that was stellar good.And I kept wondering when that weight gain was going to hit(baby,not me. I had no problem packing on an extra 40 lb) & it never happened,which is why my OBGYN and peri never told me big baby diabetic horror stories and I was allowed to go to 39 weeks before scheduled induction(only my body decided 38 wk 4 days was its limit). The feeling of my OB

was if everything is going hunky dory,then the diabetes must be as well. And the feeling of the high risk perinatologist was 

that if the scans/stress tests went ok then everything is good. I was set to be induced via them,but went into labor several days early. My Endo/CDE were pretty great about adjusting things,but it's something that you just have to plunge right into before you know how it will be. Anyway, based on all the stories I'd heard I was prepared for my kid to be larger but that didn't happen,& I now know it to be from his hyperactivity(Week 15-Week 38) the child is still a very,very active bundle of energy)..I guess hyperactivity has its perks. I guess it's partly a genetic and partly a personality thing. The thing is,the human body does things we still don't understand..and why some people have a1cs of 4.8 and 10 lbs babies and others a 7.0 and a 7 lb x oz babies no one really gets. It's not all control and it's not all genetics. I think people blame diabetes far too much for everything. And while the truth of the matter is that another pregnancy could yield a totally different child(& birth weight)knowing this has solved the "why" and proved that doctors really don't know everything.

Wordless Wednesday:10 yr Journey Award

(I may or may not be slightly obsessed with it.) 

Falling Back

Fall has long been my favorite season,(new tv shows,all things PUMPKIN,leaves,cool weather)& it's finally here.(the summer wasn't too bad but I'm still glad it's fall) it never seems to last long though,you blink,& it's 20 degrees F outside and though technically still fall it feels like Winter...long,long,winter. According to the forecast it's going to be just as cold and snowy as last year if not more so. Fall feels like a last chance attempt to prepare for the winter,and that means A.getting flu shots B.preparing for the inevitable sick days.

I am not a very cheerful sick person. My toddler has a better immune system then I do,because while he may get a few sniffles I get the all out immune system war (usually respiratory) and fluids just seem to ooze from every single pore & tastebuds stop working & my head feels like an anvil. Thankfully,it's just a cold this time around but I can tell you that if I were a single parent there's no way I could survive. Hubby gets home and I can crawl back into bed and stay there for the next 14 hours. Oddly,it's always my toddler who gives me these colds. I don't think the flu shot will do anything for me,I'll still end up getting the flu at some point because I am just that awesome. It protects me from my family I guess.(that is the hardest thing about being a parent IMO,the world never stops when you get sick)

Other then that,things are going ok. The NightScout project has been giving some pretty solid,stellar blood sugars(& hopefully one I can get back to when this cold passes). I don't know what it is (new device love?) but I do know it is doing awesome things for my a1c.

 I am going to join this fitness study at the local gym. And my sessions at the chiropractor are showing positive results (increased leg strength,less muscle tightness) although will need a back MRI that I am currently fighting the insurance company to pay. They don't want to do it unless I first go through X months of therapy with no improvement or have to have emergency surgery.People,I have diabetes,known high a1cs AND a messed up X-ray what's there to debate?(I would think that would be enough for them) Funny how insurance would rather pay for surgery then a diagnostic exam. So there you go.(on the plus side,since I met my deductible early in the year my chiro visits and all RX's are free for the rest of the year.)

I also joined a church(first time,ever,commentment issues here) and we promptly got a letter encouraging us to enroll J in the 2 year old class. First time went about as well as you can imagine.(20 minutes..they were like come get your kid NOW) 2nd time they cancelled it,unbeknownst to me,so it was turn around go home) It is fairly annoying that they don't have a room where special needs kids can go. At 2,my child is still comfortable in the nursery and yet they expect him to sit at a table & obey a teacher. That's really not happening,he will only sit at a table to eat food. Otherwise he loses interest quickly & runs off. They don't seem to grasp this concept,and think that he will get used to it.I know it to be a bad idea & he is really not ready..combine sensory issues with a anxious child & you have that. I want him to stay in the nursery another year,they say no way..they can work with us and he cannot go back to the nursery. I don't mind sitting with him but I know it will be ineffective and they'll probably send ME to parenting 101 class because they'll surmise that the obedience and other things are somehow my fault. I'm not saying some of it isn't,but I am saying I'm 2.5 years into this journey still trying to figure my child out and if you want to judge me come live my life for a week. I only wish I had more solid answers.(FTR,my mom,who had six kids says J is like three toddlers in one..a very high energy kid. And the state behavioral therapist says he's the most challenging kid she has ever met.)It will probably end in them saying "control your child better" and that will be that,won't be able to even attend church because of no child care. It hurts a lot,because I didn't join this church not to be able to even go to it and I am going to let people know that this is not being helpful. I am going to fight for my child to go back to the nursery if that's what he needs,I'm tired of everyone's else's kids fitting in all the right neurotypical slots and nothing being available for the other kids..where are the other kids? Do those Parents just not even come to church? I can't see how letting a child stay in the nursery awhile longer is hurting anyone.

We also went a beach..and J totally loved the water. (And sand) No fear,this kid!! It was very rocky/shellish/rough on feet so I think the next time needs to be at a whiter,smoother one even it means a longer drive.

So that's how my summer went..how was yours?

In the Cloudz

We are not waiting.

Oh,wait. Yes we are. Because it's not quite as simple as buying a Pebble watch from Best Buy and downloading a CGM app that sends data to the watch...no,this requires some pretty major programming skillz. (Not to mention it isn't cheap) So,this setup, it comes in stages.

Stage 1: Go to Target. Buy cheap Android phone.(Moto G) Go to Best Buy. Buy connecting cables(micro to micro USB) Charge phone. Set up cheap phone access($9/month-Ting) Connect cables. Nothing happens. Beg on a Nightscout FB group for help. Get basic service after trouble shooting. (Data shows up on other devices in raw form.) New version comes out. Setup stops working. Now setup involves 3 more websites and hours more time. Do not have time or energy for that.

Step 2: Hire babysitter. Take devices...charge.

New Pebble watch: charged

Dexcom: charged,data present

iPhone: charged

Moto G phone: charged

Set up Azure, GitHub accounts. Root data to Moto G phone. Yell at computer,spend hours going back and forth between GitHub and Azure trying to get data to work. Finally works. Tweak some stuff,set up to Pebble. Download Pebble screen.Feel proud of self that finally works on any device until you see that new version has once again come out.(Do not have time to fool with that presently. Hope nice programming person can do it for me,post in "please help me" sub thread NightScout forum) And there you go. Not easy or simple,but is it worth it? I think so,having data on the wrist is a motivator for me to be more involved with my D-care. Drawbacks: you have to keep 4 devices charged for this to work,and the MotoG drains like nobody's business.(lasts about 18 hr on full charge) And you have to cart around a phone-CGM setup,which can be incredibly bulky. Your Pebble is kind of married to the iPhone,which is why that has to stay on(although you can see it on any other phone..this is the most convenient way for a parent/SO to see the data.) Although it could be seen on an Android 

smart watch,if that even exists.

I believe in this technology,but yes,it has a long way to go. But the fact that it's here is incredibly exciting.

The Hoarder

Q: What's the difference between a bad hoarder and a good hoarder?

A: There's a difference?

All joking aside, the difference between a good hoarder and a bad hoarder is that the bad hoarders stop giving a darn and let the entropy take over. Much like diabetes management, this turns out to be a disaster. Anyway,in the eyes of the world, hoarding is a horribly slovenly,disgusting thing and I'm not contesting that it can be just that you have to have lots of energy to hoard. But post a picture like this:


Or:



Of your nicely organized, excessive amounts of diabetes supplies and people respect you for being all set for the Acopalypse or anything else that can come your way. Not "you have too many supplies to use and you really should be giving it to someone else." Here's what I think: hoarding supplies is not a bad thing,unless you hoard so much that your stuff goes out of date and you have to pitch it. If you have a generous insurance,absolutely take advantage of that, and if you want to help someone else out that is completely your call. No one should make you feel guilty for that decision, though. I personally would rather someone else can use it if I cannot. So yes, I am a hoarder,diabetes supplies included. (Made worse by a serious couponing addiction.) The only thing bad about it is lack of order,which can happen quickly,& which will be a life long struggle against. I certainly don't want to live in a nasty germ infested house. If you come to this house, you will see diabetes stuffs and baby stuffs and diet coke/juice stuffs in excessive quantities because that's how I roll. (My dream is to live in a self-sufficient farm somewhere with a generator and several deep chest freezers and have the time to garden,can,& all of that. Which I don't,right now.)

So yes, I am a hoarder,and yes,the basement is the disaster area(not to the point of rotting things,mainly a disorganized thing) in our house..but that's why yard sales were invented,to periodically plunge the madness. We all have our "things."


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Dear Fellow PWD

Dear Person With Diabetes,

I am you. I have lived with this disease for almost 16 years..I have highs, I have lows. I know that this struggle is very,very real. I hate it,as you do. I know that it doesn't lend itself to "control." But I need to tell you something, the rest of America seems to be a bit confused on all things diabetes.

(No, insurance does not always cover "necessities." Grrrrr.)

We, the people who actually sometimes give a darn,know things. We know that strips can be wildly inaccurate, we know that it's entirely possible to go from 80 to 30 in less then 15 minutes, we know Your Diabetes May Vary. We know the glycemic index of various foods, we have a running IOB number board in our brain & we know that diabetes rarely,if ever, makes sense. We know that exercise can send you high or low and that sugar saves lives. We know that you can follow all the rules,live in perfect A1c Land,& still develop complications.And since we know all these things,you'd think that health care providers would be simerally informed, right?

Nope. Most of the people in this world(& this includes HCP) don't know jack sprat about either type of diabetes. And while that's to be expected of Joe Public,it's really not saying much for those people who should know. A long time ago, I had a bad hypo & my parents wanted to know why. Nobody could give them that answer,& so it was that the "why" became "my fault." It was on that day that I discovered that doctors don't know everything,and expecting them to fix everything just ain't gonna happen. A little piece of your soul dies that day,the day that you discover it truelly is your gig,and it's never going to be perfect. So,perfect. What does that even look like?I think so many doctors and nurses paint an unrealistic picture of that..if you take insulin and eat carbs,there will be highs and lows and expecting anyone to manage that on 3 test strips a day is just plain idiotic. I want to tell you to be your own best advocate and FIGHT for what you deserve, but realize the universe is out to make that very difficult. From nurses who don't understand diabetes at all to the server who gives you sweet tea, not diet, none of this is going to be easy. But this much I promise you, you are not alone. Join a Facebook diabetes group. Get a good pumping book, get a CGM,get a consultation with a CDE. Ask. Absorb. Learn.

     We are here for each other.

Owning the Number

" This your number. Now own your number."

That's what TV extreme weight loss guru Chris Powell tells each of the people stepping onto the scale for perhaps the first time in years. They are scared and ashamed. They cry. And they hate,hate,hate their bodies and themselves (and him)and that life could get to that point.

But that number is a starting point in their journey,and they take that number and work towards making it lower. They must feel like it's impossible and sucky and there are a thousand million reasons (this is sounding so,so familiar...I am so the Queen of diabetes excuses)WHY their weight is 300 lbs but Chris doesn't take that as an excuse not to try. And I feel like that is where I am,it's the 4th worst a1c in my life.(I think it was pre-pump that I had an a1c this high) The thing is,it is just a number and I know it doesn't define me but I am A. angry about it and B. embarrassed by it,and C. it can't just stay there. Yay for the equivalent of an 400 lb blood sugar. (The shame is still there,in society,and with those of us who try to give a darn.) My Endo appt passed with zero judgement on the back-up Endos part(she acknowledged it,and we "need to work on that") but the entire appt was spent on other things. It was not the horrible session I thought it would be.(and I very much appreciate those of you who posted encouraging stuffs on the Facebook. Thank you.)

Stepping on that scale and taking ownership of that number still sucks though.(as does the actual work in lowering it)

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A Matter of Spine

Last week, I went to the chiropractor..despite my feelings that they are kind of snake oil medicine people.(one would think that they'd be learning something during those 4 years...they are "doctor" after all) But anyhoo, I went, because I have been ignoring my back for years..in hopes that it would just eventually magically get back in shape.(This is really NOT a good idea, much like ignoring your teeth and never getting to a dentist is..problems just cascade from there.) But I finally decided that if there were a chance NOT to have to live the remainder of my days with shooting,burning pain..well,it was worth a shot. Years ago, I had X-rays taken that showed a lovely little bone spur on L1-L2..and at one point, I tried a cortisone injection to help.( I had a job where I carried heavy stuff around all day in a warehouse. I had this job for 7 years. You can bet I'm kind of messed up from it.) That injection helped, but the pain came back. In (later)pregnancy, I'd wake up every 2 hours (during the night)to readjust/get some feeling in my numb legs,pee,and check my blood sugars. Now, I'm at the point where I'd really like to improve the situation before it gets worse,so off I trotted to the chiropractic office. I watched a bunch of boring stuff/read some boring flyers with such grandiose statements as "restoring the peace and harmony of your body" and the chiropractor have me a physical exam/did an X-ray. On the next visit, he plopped my X-rays up and gave me an X-ray 101 lesson and had me tell him what was going on.
Which was:
-L1-L2,still messed up. But it isn't fused,and there's still some real,possible hope that chiropractic therapy will work.(it's a sort of a level 2 out of 3 scenario) If it's fused,nothing but surgery will help.
- I have a genetic condition called Facet Tropism Syndrome. (Genetic..I got it from my dad.)It's when your lumbar disc decides to develop like a thoracic disc. As you can imagine, it's not good..and can put you at risk of a herniated disc.L5 is the tropcated disc. Because of this, I naturally lean towards one side..towards the other is difficult. And it looks like I've been through "trauma" in some point during my life.(my hip is out of alignment) (Who hasn't been though trauma..but I digress) That required TWO signed forms absolving him of any fault should my disc herniate during treatment. All of which is hard to hear because I don't know how much I can expect to get better, and whether something will rupture but I know I have to do this now, for me, whatever the risks. I don't want to be living in a wheelchair in 10 years. I want to be as healthy as I can. So I will be going in 3x a week,staring next week. I hope it helps the pain and the numbness.(my left leg has noticeable strength deficiencies compared to my right.)

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Summer Dayz

Still here, still kickin.' Summer is flying by..and we still haven't made it to a beach. We have made the annual "Trip to the Zoo" and the "Trip to the National Aquarium" though. (During the three weeks that my MIL came to visit.) Whereas last year young J wouldn't even look at an animal, this year he got more into things...petting the goats at the petting zoo, pointing to the birds, and baaaaing at the goats. He is still a toddler,and would far rather run around (sans protective hat) screaming "Runnnnnn" at the top of his lungs but it's nice that he's actually interacting more now.

I finished up a summer course to requalify for the nursing program,& I'm #125 wait listed for the fall.(aka don't count on it) Its ok though,because I actually am enjoying not having to get up insanely early & spend all day on the road before crashing into bed. I will get into the program in either the spring or this fall.

How's it going with you?

FFL: Touching the Elephant

There's this common misperception that CWD friends for life is just for kids with diabetes,and their families.

But it's so much more complex then that. FFL is many things to many people,depending on your social 'sphere.

If you grew up with it,you are pressed into service for free labor.(as a young adult)

If you are a sponsor,it's an excuse to go out with your buddies at the end of the day & unwind at the hotel bar.

If you are in the DOC (blogger,etc.) it's a place of great support & one of the few places where everyone else is just like you.

If you are a parent, it's where you find support,and knowledge,to help you in your fight against this disease among 1,236 other parents who really GET IT.

If you are a kid with D,it may be the place where you find your first friend with diabetes.(& if you are a sibling,you can sound off about the stress of the family dynamics)

If you have celiac,it's one of the few places that you can eat from the buffet and not have to worry about gluten contamination.

If you are a presenter,without diabetes yourself...you are probably laboring under the assumption that it is for kids with D. Well,it is,but it's more then that. It's a place where the famous and the non-famous rub shoulders,where doctors and grocery store cashiers eat the same special buffet rubbury eggs, where it doesn't matter who you are or how much money you make..the power of the green wristband unites us all. It's a place where you
can laugh hysterically over a 306 mg/dl,where you can count on someone always having a needed diabetes supply,where you can drink diet coke with wild abandon at midnight and compare Dexcom graphs with friends.

I didn't go to FFL this year,for the first time since 2006. In 2005, when I went for the first time, finding that niche to fit into was a challenge. (The experience can be a little lonely without friends to hang out with. And yes,you are surrounded by 4,500 people who "get it"who still would rather do their own thing.) In 9 years I've felt like I've seen so many of the sides of FFL..I have volunteered with the teens,babysat 4 year olds, been with the bloggers, gotten to know many of the moms of CWD,seen the same sponsors year after year. I guess the point is,FFL is so much better with a friend/s.(And people who leave you crying at the gate of Disney to get back to the hotel on your own are probably not your friends.Know who your real friends are.) All of which has been an incredibly rich experience,& mostly good. (But I think every lonely soul who ventures to FFL on their own needs an Dbuddy or something so they don't have to feel alone.) I think a lot of people don't come to FFL because they don't know anybody there.

I don't think I'll ever understand all that FFL is,just like the blind men couldn't grasp the whole of the elephant..this green,orange,and yellow arm banded elephant. I see life through the view of an adult T1,blogger,married,with 1 child and a lover of Disney (& any excuse to go there that I can.) There are so many perspectives at FFL and that is the beauty of it.(it's just sad that more people never move beyond their own.)


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Gone with a G

"It's not about me."

Except it was,darn it. My nephrologist had announced his retiring intentions via mail,and there was no going back..only forward.

"I want to find someone who is good for you,& your set of rather unique issues."

And so,we talked. (At my last appt.)We talked about my magnesium issue,the diabetes,the Vit. D (where he dropped a rather potent analogy comparing my taking a few Vit. D pills to sipping a drop of water for dehydration),the upcoming gastro appt,the possibility of Celiac(doubts it),this,that,the other. He is leaving the practice to take care of personal issues and won't be back (he's also getting older.) And we talked about a replacement doc(I could stay with the practice..the other neph will see me,or can wait till the practice hires several other docs.) I think Ill do that,not that there's much choice, but he encouraged me to keep on this path till I got answers.
I'm really sad about his leaving,and I feel like he was sad too but you can't help some things.(at the end of the appt,we hugged,and that was the end of it. I don't have answers but he still tried to put me on a path toward some and I'll always remember him.)

In other news, I won't be going to FFL this year. That's another extremely painful happening but thanks to my summer course and lack of funds from unexpected bills we can't afford it this year. Hopefully next year.


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The Celiac Connection

Last Saturday, a T1 friend and I drove to TCOYD in DC.



I've been under the impression that one either had celiac(or not) for quite some time now. Since I've tested negative several times for antibodies, I've assumed I don't have any problems. But at Friends For Life last year, they were doing HLA genotyping(along with antibody testing) which I participated in. Last month, that test came back positive which means I have the genetic susceptibility for the disease.(as does my offspring) I had J tested(amid the eye rolling of the pediatrician),and he is currently antibody negative.(to get the genetic test done I'm pretty sure you have to go to FFL because insurance wouldn't cover it) I really wish I knew if he were HLA positive because if you aren't,you cannot get celiac and if you are,well you can be on the alert for signs and symptoms of the disease. Celiac,as you know,sometimes has zero symptoms(indeed,I've never had issues with gluten). In the midst of my current issues with magnesium absorption, I've also had issues with low vitamin D..and as always,I have autoimmune Hashimoto's. Anyway,at a session on autoimmune diseases, the doc was mentioning the very strong thyroid/T1/low Vit.D/celiac connection and suddenly the light just kicked on...nay,it flooded over me in its clarity. (There have been papers written on how people with hypothyroidism should avoid a gluten diet to avoid the onslaught of that disease) That was me she was talking about. I don't have results yet from the colonoscopy biopsy,I go back to the GI in a couple of weeks. In her opinion,people with that positive genotype should probably have antibody testing every few years to make sure they detect the disease.
They can also do a test to determine gluten insensitivity.(different from full blown celiac) It's left me very confused(which comes first,the chicken or the egg?)as to what precisely could be going on. Would going on a gf diet possibly improve mag absorption and stave off celiac,or what?(I'm sure as heck not going on one without a very good reason) A lot of people think they don't need to worry about celiac at all..that's just not true. Like type 1,it can happen at any age and with few or no symptoms.
On the magnesium front, my levels have improved but seem to have hit a plateau and aren't continuing to go up. I will be trying to gradually decrease the amount of time in between IV's,and supplementing with oral mag. It's going better at least.
(And on a side note..TCOYD was awesome.They had a T1 track and a T2 track/exhibit hall and it was like a mini FFL conference!)


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The YoYo Effect

Up. Down. Up. Down.




Such is the flow of life with type 1 diabetes,and it can be wearing at times. Especially as the days turn to months,the months turn to seasons,the seasons turn to years,the years turn to decades.

"Are we there yet?"

We are a long way from being "there", a long way from anything resembling a cure. Slamming the door on hope is a hard thing to do,but I think we can at least hope that things will get better in our lifetimes.(in terms of diabetes treatments) And maybe,a cure. But having another condition for which most of the world has never heard about let alone have any interest in,the concept of having that ever cured is very much the hopeless one.(I'd far rather have the 'betes cured anyway,but still,the research is driven by the masses who have it.)

There are times,like three nights ago,where I get tired of it.All of it. Site changes/pump change outs get pushed back/undone,and I just go to bed..not caring if I wake up 300+ at 2 am.(and I do) There is always something to be done with diabetes,always some device to charge(pump,meter,Dexcom,phone),always some blood sugar to check/correct,always some carbohydrate to be consumed at all hours of the day and night,always some phone call to make regarding the meds/supplies that keep me alive. It's all diabetes,all the time.

"Do not go quietly into that good night
Rage,rage,against the dying of the light."

-Dylan Thomas

It gets very wearing sometimes,but neither magnesium deficiency or diabetes is going to stop me from at least trying to stay strong,even though I suspect the only strong part of me may be my stubbornness. I don't feel strong,I feel tired all the time and mentally "ok" until it all just piles up and I just completely crash.
I don't want it to win,at least not for the next 40 years or so. I'm not the only person fighting daily battles against diabetes(and all those other annoying diseases)..and I realize how many others have died,so prematurely, from this disease. (We all seem to have this notion that "control"= no bad things will happen. Not true.) Ultimately, it boils down to genetics/lifestyle/and not getting hit by any one of the millions of idiotic drivers as to how long you can live with this disease.
(Sorry, my car got smashed up in the parking lot the other day..and I am having fun dealing with the police,insurance company,and the car repair shop.)

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The Magnesium Wars

When you get dxd with diabetes,food goes from being food to being a collection of carbohydrates,proteins,and fats.(the same, I imagine,with any GI related illness) When you have problems with maintaining electrolytes food turns into a collection of potassium,magnesium,etc.

The above photo shows four types of magnesium supplement..as with insulins,not all supplements are created equal. Magonate is the rapid-acting,chug it down and in 2-3 hours your acute symptoms with subside,stuff. Slow Mag is the gentler on the stomach stuff(kind of like UltraLente-longgggg curve of action) and Milk of Magnesia is just there to get things kick started in a gentle way. Mag Oxide can be helpful(it's sort of like Lantus..over the course of a day) but when it decides to ravage your gut,you'd better be near a restroom.(It's the most brutal) And,there's Mag Sulfate which is given IV over a few hours.

On Monday I had my colonoscopy..and in preparation, I went on a clear liquid diet (Sunday)and drank a bowel prep (Prepokick,which had a ton of magnesium in it). It all decided to kick in at 1-9 am,suffice to say I didn't get adequate sleep. Took J to the babysitter and hubby drove me to the hospital. Prep took about 1.5 hours,and then the endoscopy nurse wheeled me to the OR. My bg was 196.(the tech didn't bothered to check this,but I let the nurse know regardless) There was a brief "do you have anything to declare" by the anesthesiologist, and some "you'll do great..it will be a lovely little nap" by the nurse and I was out like a light.(following administration of propanalol) It took about 30 minutes. Woke up and they said my bg was 156. The gastro came in and said everything looked good initially,took some biopsies and step up the game on the gut motility administration.(milk of mag) He didn't think it was absorption issues,because everything looked pretty normal in there follow up with him and my nephrologist. So,the stool test(for pancreas insufficiency) is unnecessary. If my gut isn't absorbing a nutrient,it's possibly because it gets overwhelmed by it(one has to work up to the dose, I guess). In the meantime..back to the magnesium wars. I get levels done weekly,and an infusion every week. Unfortuently, even with stuffing all this mag in my body I am still getting numbness,tingling,muscle cramps. (And lab values to match) I am thinking I may have to go to U of MD(or somewhere) to get another perspective outside of the problem because my neph admits that he's stumped. It's just not looking good at all.

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Dblog Week: Saturday Snapshots

(I guessed 80. I was wrong.)



(Tandom Twins!!)



(a history of old pumps)



(Bad day.)



(I hope.)



When Mommy has diabetes.




Splenda crop circles.






Low treatment.




Sale at CVS.




Or waddle.





And don't forget it!!!

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Dblog Week: Diabetes Life-Hacks

Dblog Week: Diabetes Life-Hacks

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

Life Hack #1

I'm amazed by the number of people who have never heard of Tegaderm/Opsite/IV3000...and then complain that they had to stop pumping because their sets/CGM sensors fell off. In my mind,that's not an excuse...THIS IS WHAT MEDICAL TAPE WAS MADE FOR. If you have an allergy to those products,this does not apply to you. (And this isn't meant to be medical advice) But really,there's a big,big internet full of D-forums with people who have had every sort of pump issue known to man and your pump trainer/CDE needs to be recommending these products in the first place. Do not say that pumping isn't for you because your set fell/got ripped off. There are ways to prevent that.

I personally use Opsite under my sets and over my CGM sensor. When I was podding, I'd use it over my pod.(guess what..I never had a pod rip out) The stuff is pretty awesome,in my book.

Life Hack #2


Let's play a game called "has this ever happened to you?" You are walking along,with your CGM or pump set displayed proudly on your upper arm when suddenly,someone asks you what that ugly tumor is on your arm. (It's happened(And then you get to explain your 'betes devices. And then it happens again,and again,and all day. Because people have no filters on their mouths,anymore. You may have just wished to be like everyone else that day,part of the crowd,but these devices catapult you to diabetes advocate #1...all day. Maybe this is agreeable,maybe not.




And then one day you put something like this

over it,and the awkward questions stop. Instead of geeky,you look super hip. And that,my friends,is a diabetes win.

Life Hack #3




I label when I open all my meds.(or kid's meds) I'm sensitive to the effects of meds,so I usually have to pitch the vial/etc.before it all gets skunky.I've also opened new vials before the original gets used,so it's pretty important that I know how long it's been open.(I keep them at room temp) Nothing is worse then wondering how old a vial is. I go through test strips much more quickly,so I don't bother with labeling them. I also put a piece of tape on my CGM site so I know when it was started,since I run my sensors as long as possible.(do not do this) 

Life Hack #4



Be prepared. I keep a diabetes case upstairs,and a diabetes case downstairs...in central locations that I know where they are. Inside are syringes,insulin,set change supplies,strips,emergency fast acting glucose,money. Said cases are brightly colored (and large)so I never have to worry about not finding it,and everything goes back in the case when I'm done. Hubby knows where the glucagon is(not in the fridge). And if there's an emergency I know what supplies I can quickly throw together to take.(with an emergency charger for all my diabetes/other devices) I hate not being able to find things.

Looking forward to reading others tips!