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.)

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!

Dblog Week: Pollyanna Moments

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)


If you look for the good in something,you surely will find it.
-Abraham Lincoln

There is still good in you,Father. I can feel it.
- Luke Skywalker

Rough days-I've had a lot of them lately. (Spoiler Alert: I am not Pollyanna)And diabetes,bless it,is along for the ride. But on those days which are particularly bg-sucky, there is no magic saying that will make it all ok,that will make me feel physically and mentally ok.

Time,fluids, and perhaps a nap help. And of course..insulin. Usually rough days involve hyperglycemia and my brain is too tired to get frustrated...if it involves hypoglycemia I can and do cry. Once upon a time, in my first year of diabetes, I frightened many small children by bursting into tears for absolutely no good reason on the daycare playground. (My blood sugar was in the mid 40's.) I was led inside to recuperate(and drink juice) from my haywire emotions..and then I was ok. (Except for the embarrassment.)I think that everything just builds up until I explode, and that's hardly a good way to release stress. But I try to find joy in something,anything,each and every day. Living in America, with 21st century medicine at my fingertips(!) and having a wonderful spouse/son and an adequate existence you'd think that this would be easy. The human brain,however,creates (or zeroes in on) the things that could be better.
And that's just the nature of things. But focusing on just one good thing can help you feel marginally better...in that moment,whether it's an in-range blood sugar,a butter compartment full of insulin, or the crispy tang-ness of a Diet Coke when you are dying of thirst from a high blood sugar.

Because life,should be about hope.(and joy)




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#Dblog Week: The Mental Stuff

In nursing school, I cared for a patient with a leg ulcer. This person did not have diabetes,but they did have impaired circulation to their feet,as a result of cardiac conditions. And the resulting cascade of unfortunate events(leg gashed on trailer hitch) left a wound to the bone,& a subsequent infection of the worst possible kind.(when I looked at that leg ulcer, it was like staring into a "maybe me" future.
The amazing thing to me,is that he felt no pain. This was a wound easily the size of my hand,and redness all around. Inside,there was yellow pus and black eschar(dead tissue) which stuck to the bandage. I had no idea how on earth I was supposed to get that all out of there,but my instructor said that that wasn't the point.(patient has to go to the OR for a wound "vacuum" incision) My job was to rinse it with saline,pack a ton of wound cream in it,and put a bandage on it. And,with her assistance, I did so. (All with no pain on his part) It was a very real and graphic representation of what diabetes can do to a person,and really what nursing is all about.(at one point I thought I was going to vomit from the smell,the nurse just looked at me and said "yep,it takes getting used to." (I did it though,and it was even something that I enjoyed. It was real nursing care.)


(This is my banged shin. I don't have leg neuropathy,so it's delightfully painful. This won't stop me from worrying about infection,though.)
I hate that diabetes steals so many legs,eyes,and kidneys. I hate the smell of a wound ulcer.I hate seeing blue candles. I hate the pain that diabetes causes. I hate that I see myself in an uncertain future. So,so many things I hate..and as much as this is meant to be releasing we could be here all day. Most of all,

I hate that there is no cure.
(The End.)

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Dblog Week Day 2:Dance of the HyperFairy

(This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!)

Numbers dance
twirl
jump
smash
crash
plunge
rocket
A beautiful symphony of life,through the lens of a dysfunctional CGM.

It is my normal.
To be otherwise
is something so foreign
(Yet so exotically appealing)
as to wonder
"What else would I be doing
with my life?"

Site changes
post-brushing teeth lows
doctor appointments
$$$$ medical supplies
constant analyzing
random 400's
not sleeping through the night
It's been my life,for so long.

I don't remember how it really "felt"
to have a flatline blood sugar 24 hours a day. (Although I'd certainly not object to a return to that.)

But there is a method to the madness
Purpose to the willy-nilly
Meaning to the insanity.

Dance on,you crazy beautiful life.
My CGM is a performance of rawest form.

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Dblog Day 1: Changing the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)


Diabetes is the leading cause of nothing..so they say.

Oh,wait. That's not quite right..well-controlled diabetes is the leading cause of nothing.(we won't get into the semantics of "well-controlled"and genetics and all that jazz. That's a topic for another day.) But "control?" I think we can all agree it takes certain things to make that happen..medications,syringe/pump supplies, accurate AND adequate amounts of test strips,a supportive medical team, regular exercise, education & support. All these pieces to the puzzle. I think we can also agree that too few people have these..and too few insurance companies realize all that is involved in what makes up "control." If I could advocate, and if I ever won the lottery..I'd set up a foundation to help people get their meds/test strips/diabetes supplies. And I'd try to get on some famous person like Ellen's show to try and raise awareness of what this disease is,and the importance of treating it. Famous people have an incredibly platform to raise awareness. Meanwhile, the type 2 epidemic marches on. And there's not much we can really do about that until we cure both types of diabetes. We have to, before the costs from this disease bankrupt this country.(and others) And in the meantime,we all deserve treatment to keep our diabetes as well-controlled as possible. That's not to say that the average Joe Blow can't (& indeed,should) advocate but most people have jobs and responsibilities preventing them from doing so. It's just hard to see people A.not having the means to get supplies in the first place and B.being denied the treatment needed. Sometimes I think this diabetes battle can only be "controlled" enough to live a long,healthy life..if you are lucky enough to live in the top .0000000001%,first world,excellent health care,adequate funds to at least cover the out of pocket,all the advantages.Diabetes in the trenches is a whole other story. I would try to help people as I've been helped,to give them a chance to live a healthy life. I've never had to choose between food and test strips..and no one should have to.

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The First Mothers Day

Mothers Day, 2011.

As I stared into the church rafters that day, I wondered if I,indeed,would be joining those ranks soon. It was a melancholy sort of feeling..and an intense one,to boot. But it was far too early for even a blood test. I could hear the words of my Endocrinologist echoing in my brain..and she was of the opinion that this was it..time to batten down the blood sugar hatches. She would prove to be right.


Five days later, my world shifted on its axis ("hello,yes,you are pregnant")and every "am I or aren't I" symptom hit with a bang. (At 28 days) My little blastocyst lost no time in announcing his likes/dislikes to the world. (Most bizarre symptom:everything tasted metallic from weeks 6-9)At 7 weeks,an infected groin lymph node necessitated taking antibiotics for several weeks.(oh how glad I was that it wasn't appendicitis or a miscarriage) First trimester weirdness soon smoothed out to stability for the rest of the pregnancy.



Mothers Day,2014. I'm so glad to be his Mommy!! and that he's healthy!!


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The Early Bird & The EI Therapy

In the 80's(and prior), the popular opinion of the day was that if you didn't worry about your kid's development,they'd eventually catch up with the others and turn out normal. (I'm still not sure this worked on me.)Not speaking till the age of 4? Your little Einstein is just thinking deep thoughts...just relax, Momma. 30 years later, we've progressed to Early Intervention Programs and nipping those problems right out of the womb,so kid turns out As Normal As Possible.
My child is almost 2.5 now..and he's been in EI for about 9 months. He isn't on par with the other kids his age,he speaks mostly in one word requests(while most kids are up to two) and he's a tad cognitively delayed. In the opinion of EI, it's because he's very,very opinionated on doing things his way and tuning the rest of the universe out.(which is typical toddler behavior, but they(toddlers) need to be engaged with their environment to learn and develop). So the trick is getting him interested in activities that help him learn. He has a very short attention span, (for anything other then the TV or iPad) and it makes it very challenging. The 80's policies would not work on him at all.(he needs intervention) My mom tells me not to worry,that he'll turn out just fine some kids just take longer to get it..and I know all that, but I can't just let it go,it's my job to see that he gets the best. He doesn't have autism,but it seems like he's in his own little world and he rarely comes into mine. (He engages with the environment and with people) I think the main reason it feels this way is the lack of communication,or just basic one-word,pull on clothing type gestures. I can see that he has made progress in the program,but I can't help but wish it were a little faster.(it's uncharted territory) The Behavioral Therapist is in the same boat..learning along with me. He can be in this program until the age of 3,then the school district takes over.(another can of worms..this child cannot sit in a preschool/follow direction,no way.) And I don't think putting a high-strung 3 yo in a classroom situation is the right thing to do.(too early) but he needs intervention,and perhaps the state is the only one who can provide those one on one services. I grew up in a world of freedom,a world where you could run off all that energy in the backyard..and do the schoolwork a little later.(I was homeschooled with my siblings) But it feels different when you just have one child,they have all your attention & you want to see that they get the best.(I don't know what educational pathway that will take yet..I just don't know if I could do an adequate job homeschooling a special needs child.)




(My handsome boy in his Easter suit.)

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The Endo & the Gastro

I saw both today. The Gastro spent time berating on my lack of good control (I don't really care,he doesn't know anything about type 1) and said the plan of action is to run a stool study(yay,poop collecting!) and a colonoscopy to make sure things look to be normal /not inflamed down there.(slated for middle of May) This is not a test that I ever envisioned myself having before the age of 50,but if it clears up the mystery of the magnesium problems I'll do it. The stool study will measure my pancreas enzymes.(or lack thereof)

A few hours after that, I hopped on over to my Endos office. She is going off on surgical leave and won't be back till Sep.so that's kind of sad.Last time she was off on maternity leave was 4-5 years ago...it's been awhile. The back up Endo I just didn't connect with. Anyway,we discussed all that was going on with my health...and my thyroid/Vit.D issues. I want to switch to the Armour brand of thyroid pills but she wanted to get another thyroid level (and ensure that you can't take it during pregnancy..no worries there) before she switches me.(I am really bad about taking pills, and I don't take it every single day like I'm supposed to.) Reviewed my abysmal CGM graphs.(new goal: AVOID (daily) 300's IF YOU CAN) and I kinda sorta got the "you need to be more aggressive about bolusing..you have a CGM and it will tell you if you are going low" talk. And I know that, but I hate lows,and one low is one too many. I've become that person for whom 80 is the end of the Universe and suck city for the next hour. It's hard to make yourself embrace the crappy hypo feelings all over again..and yet that is "control." But I am back on this band wagon and I am going to try to do better.A1c I have to get done at the lab..it's not covered by insurance at the office. I really feel like my Endo covered all the basics though..got a lot going on my life and she addressed all my concerns. It was a good appointment. As far as my magnesium,it's been steady w/weekly infusions.(it even went up last week!!) So far,they have found veins to infuse..and I am grateful for that.(hoping that I can increase the amount of time between infusions to help my veins heal for the next go-around and that a port won't be necessary.)


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Down

The phone rang,right on cue with my toddler's "waaaaaa"ing for some more juice.

Deep breath. Check number. Pick up.

"hello?"

"Hi Heidi this is Dr. Nephrologist. Your mag is still low at 1.1 and there's something not right going on..how much mag are you getting?"

"4 grams a week."

"I'm concerned you may have a malabsorption problem..you need to see your primary and a gastroenterologist,are you cramping?"

"All the time."

"And I think you will need a port,because your veins are probably giving up by now."

"Yes,"(fighting back the urge to bawl)..

"The pancreas is responsible for an endocrine function and an exocrine function and I think there may be something going on there..you need a full gastro work up. Are you having diarrhea?"

"Sporadically..once every few days."

"I think the malobsorption may be the cause of your electrolyte problems..also try soaking in Epsom salts,your kidneys can handle it. It will dry the skin out though."

"I know you don't want a port but I think you'll need one,this needs to be figured out. We will continue to check mag levels and talk again later."

Scared.


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Stuck

Unless things really improve with my mag levels in the next 2 weeks, I'm going to have to get a port.(in my upper arm or chest) All my arm/hand veins are completely shot. Ports scare the bejabbers out of me,& I refuse to have one done. But magnesium has to get in somehow. I'm trying to supplement with fast-acting magnesium liquid,& I 'm going to talk to my doc about Epsom Salt soaks(that is a very iffy method of upping levels though and my doc said he once knew someone who did it so much she put herself in a high magnesium coma that led to death). My mag levels are being drawn weekly.(and they are staying stable-low end with weekly infusions) I have to do something drastic,and it has to be hardcore or my levels will not go up and I'll have no choice but to get a port. Ports scare me because of the risk of blood clots/you have to take Coumadin/and your entire life revolves around the darn thing not getting infected and it can never come out,not at the rate I'm going and I'm afraid I'll need it forever. I'm fairly certain I'd need an anti-anxiety medication just for everyday functioning on the thing,not that I don't need one now but at least there's not something sticking out of my chest. I am willing to take magnesium,lots of magnesium,even if it makes me sick as a dog,to stabilize things. I just wish that they would stabilize because these veins need a break.I'm trying to take things a day at a time, tracking my levels and to be grateful for each day but it's not really working when my veins are responding by giving up the ghost..I got stuck 4 times today for an IV. Things really need to get better,soon.

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The 31 Days of Blood Sugar Control

(28,29,30...as the case may be.Warning:the below post is about women stuff!!)

If you don't have diabetes, or much of a relationship with a PWD..you are probably laboring under the assumption that blood sugar control is easy. You are either "in" or "out." (Think Top Chef) This is an assumption that has permeated every inch of society, to the point where even educating those willing to learn TAKES YEARS for them to get.(Namely,that blood sugars are a living,fluid thing...not at all static and stuck on "104")

- you go low in the grocery store,a kind soul hands you a sugary drink..and assumes you are fragile,etc.

-you eat a brownie,spend the afternoon shoveling snow, drop to 42 and your relative just cannot understand why (or they get the idea that because you ate a bad food, THAT is why you had the low).

Head smack. I'm sure you get the idea. I have been thinking though,that for a women with t1 diabetes, control is a River in Egypt.(much like the Nile) Why is this, you may ask? Well,much of it has to do with that monthly inconvenience (or lack thereof) which means in addition to the meds/exercise/other illness/food/no sleep/etc. normal ness of life,you get to deal with some pretty potent hormones which (in a normal cycle) drop to "normal" on Day 1, go flat-lining along merrily to the middle of the month and then skyrocket for the later part of the month (as do the insulin needs.) That's how it is for many women,anyway. (Others will drop their bgs.)If you get pregnant,that progesterone kicks in like a son of a gun and you can expect to see more high blood sugars along with your Endocrinologist going a bit/lot psycho.(later,the drop comes) I think that's why I will never not have highs (and lows)..you can live a lifetime with diabetes and not figure it out. (I have a very non-predictable life.)It's not entirely bad though, estrogen protects against heart attacks and the like.(however much diabetes is messing with that) Life is pretty tough for a woman with diabetes(DON'T YOU DARE GET PREGNANT OR I WILL KILL YOU MYSELF) along with the daily highs and lows. Options exist to smooth out those hormones, but that comes with the potential side effects of strokes/heart attacks and the like but in the eyes of the Endo,still better then pregnancy. It almost makes a person want to have a voluntary hysterectomy. And I guess it is better to have those options not to get pregnant, but one has to wonder what 30 years of diabetes plus pill taking is going to wrack on the circulatory system. But for a women with T1, still easier then going through multiple pregnancies.
One's body is just not ones own..

and then you are violently thrown to the Diabetes Police,masquerading as Health Care Providers, the supposed experts...who have no clue what you are talking about/doing..you've just got to realize that you are not a textbook,they do not have Crystal Balls and the future is an open book. But yes, it gets scary, because you think they are talking about you. Long story short,blood sugar control is rarely "easy"...you are thinking 1,000 things to stabilize one deficient hormone.

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The Permanence of Performance

They don't know
that the pain I feel
Is not from IV tracks
Up and down my arms
A disease unleashed
Monsters knocking down my body
Making me fear the future
I only hope that I can die from diabetes in 30 years
And not from plummeting magnesium levels.
"What does this do
And this?!?"
Uncharted waters
Not easily measured
I trust my doctor
But I don't trust my body.
There is no roadmap
No blueprint
It is not diabetes,and Your Disease May Vary.
Will it get better
Will it stabilize
Can I go to sleep without worrying
Can my toddler know his mommy for a good long while
Will my husband still have a wife
Can I function
Will it eat up all the money
Will my veins hold up
Will I be living at the hospital
When can things be normal?
"You look so normal!"
(This is politeness
because)
I have two chronic diseases
There will never be normal.
Juggling must be automatic
It's what you do
There is no choice.
But I just want one problem,
Not 1,000,001.
My friend died from her disease
When she'd barely begun to live.
There wasn't another person on this earth who had both T1 and Bartters.
And there maybe will never be.
Alone with an unpredictable disease
Searching for some answers.


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And the Winner is..

Alexis Nicole! Congrats and I'll contact you through FB!

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Diabetic Dabs & More! Giveaway

I'm very excited to be holding The D-Log Cabin's very first diabetes giveaway..fueled in part by Elizabeth Sacco of Diabetic Dabs who offered a sample of their product to myself,and a blog reader. She's a mom to 4,and D-mom to one.(her son was dx'd in 2011 )






It comes in 4 packs of 50 sheets each. Each sheet is highly absorbent,and can be ripped off and discarded although I use them for as many blood blots as I can. Easily fits inside my meter case although it would be a bit bulky for your standard ugly black case. Each box is available on her website for $9.49 plus s&h. After reviewing this product, I feel like I'd have wanted to buy this anyway..it's not just like blotting your finger on some old paper napkin floating around. It's soft,blood wicks up quickly,and it's portable and convenient. And today, you'll get a chance to win a box....








Along with two boxes of Level Life Bars: (a good low carb snack)








A cupcake picture frame & $5 Radio Shack gift card:








A GoPicnic Meal:






And a blue organizer bag to put D-stuff in(or whatever...I just love organizer stuff).







To enter, just leave a comment. Winner will be drawn Sunday night.( 3/23) (also,it must be apparent that you in the D world..either yourself or a loved one has diabetes)




(The whole shebang of goodies)

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March Madness (part 2)

Day 13:

Slowly but surely, I think I'm getting better from this flu crud.(Yes, it was Influenza A..major good diagnosing skillz, Dr. Hyphenated Last Name of the Cardiology persuasion)
The fevers and sweats of last week have subsided, the cough is nearly gone and it's just the exhaustion that's left now. Rubber legs,that's me. I suppose it's all very normal but I don't recall having ever been this wiped out from the flu before. I had a follow up with my primary today(the office, as my real primary is off on maternity leave for the 2nd time in 22 months!) & they took some more blood to check my electrolyte levels. Tomorrow, I follow up with cardiology(repeat echocardiogram). In the meantime, I rescheduled my Endo appt to April..that was just not happening anytime soon. It's really done quite the number on my bgs, although I'm grateful that my meter average has come down to the lower 200's from the upper 300's, this stuff is brutal. My a1c was in the 8's. And I know that that number should be just a number but I know that I can do better,should do better, heck I've got all the tools of 21st century medicine and this is what I produce? I think a big part of that is A. My fear of lows and B. My lack of accountability so I am going to look at ways to address both of those issues. Regarding my fear of lows, I am going to choose a ranging (to target) that is far,far away from the danger zone..yet moving towards a better place. And I'm making an agreement with some T1 friends to chart my bgs(etc.) more. I'm going to use the MySugr app,it's really pretty awesome (I just have to wrestle the phone away from the toddler..) It just seems like when I get sick, upping my basal rates has zero effect, my basals are so low anyway.(doubling a 0.2 or an 0.3 is not going to do anything to lower that glucose-dumping liver of yours) I feel that I should do something,because that's the first thing everyone says to do when you are sick but I think my primary problem comes with meals..how much of a modified I:C ratio I should do. It's wild. I am really not sure why I bothered getting a flu shot this year..the flu still found me. I'm glad that it's the only respiratory thing I've had this winter,and even gladder that neither my hubby or child got it.(apparently it's just me with the screwed up immune system)



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March Madness

They say it takes a village to raise a child. And that it so true,.especially when the child is just two years old and needs full time supervision.

In my case, it takes a husband, a friend, and a babysitter for the week as I try to recover from the virus that put me in the hospital over the weekend & caused fluid to accumulate in the heart sac. I wish for my mom in circumstances like this,but she is 2 states away and works full time..not practical to come up,unless I'm dying.

It started late Thursday morning, a heavy sort of chest pain with random stabbing action on the side. It didn't feel muscoskeletal or heartburnish,and iboprofen/Mylanta failed to do anything to it. I've been worried lately about the cumulative effects of diabetes on this heart of mine,and was convinced I was having heart problems of some kind..the hubby got home and I went to Urgent Care. They did bloodwork,an EKG,and a chest X-ray. The UC doc told me I needed to see a cardiologist,there was a minor irregularity on my EKG, don't worry about it but do get it checked out. I asked whether the irregularity was causing the chest pain and they said it was possible but they weren't cardiologists. I asked whether the irregularity could cause a heart attack and they said it was possible but not very likely. Joy. Went home,slept, woke up..spent much of the morning lying in bed (while my toddler played on my iPad beside me)feeling progressively worse,got an appt with my primary care office for that afternoon. They looked at the urgent care report,looked at me, and told me to go to the ER I might be having a blood clot. By this point, it was 4:30 pm and my husband would be back from work soon so I called him, called a friend to ask her if she could take me to the ER and drove home to wait for them both to get there. We drove to the ER, they take a bunch more blood/EKG/chest X-ray, eventually get called back to a room...the ER doc comes in,takes a listen,says I sound tight in my breathing and he's not sure if it's lung or heart related..they do a breathing treatment which fails to have an effect. I get up and walk around for him and after 10 feet I'm absolutely winded,with a heart rate in the 120's and a respiratory rate around 30..my lungs sound clear,I just can't "move" air very well. So then they do a CT scan which turns out negative for any problems. He decides to admit me overnight for observation. Move to a diff area in the ER. The nurse comes in and says its time for my nightly injection of glucagon, a rather scary proposition considering my blood sugar was 311. (Needless to say,that didn't happen. My friend and I thought it was hysterically funny,though. And that is why it helps to bring a T1 friend along with you. ) By 1 am,they brought me upstairs and my friend went home to sleep. I think I slept about 1.5-2 hours,the breathing treatment had me wired pretty well. I was also on a portable heart monitor and trying to bring my blood glucose down to earth.






(When you are 5'2 and have to wear a giant hospital gown with a pocket to keep this in it gives a whole new meaning to the phrase "indecent exposure")

Also,my roommate alternatively coughed/snored/IV went off for much of the night. And because I was there to rule out heart problems,they drew blood every 4 hours. At some point they wanted to put a nitroglycerin patch on me and give me aspirin.(I agreed to the aspirin but my blood pressure is normal-low and I wasn't about to take a powerful vasodilator without a cardiologist talking to me first.) Morning came..they took me down for a treadmill test. Injected radioactive stuff in my IV and took images with a scanner. I couldn't walk very far & the treadmill part wasn't going to happen,so they were going to do an alternate injection of a drug to stimulate the same thing but I had drunk caffeine free diet coke in the ER,and that would invalidate the test results because it still contained caffeine. That meant another day in the hospital,before they could repeat the test. I was rather peaved at that turn of events,but it was what it was. They called a cardiology consult who came by a couple hours later. He took a full history and checked me out and said it sounded to him like I had a virus,but they'd like to do an echocardiogram (that day.) The nurse practitioner on the floor was a very jubilant/go getter/lets do this sort of person..coincidentally, the wife of a nursing instructor in the program I was in.(I was like, that's where I know that last name!!!) They did the echocardiogram...my hubby and baby came by for awhile to visit. (It was nice to see them again.)





(Baby snuggles)

My friend brought some food by(hospital food sucks) and hung out for awhile.








(Plastic,anyone?)

My room mate was very sick,newly dxd with several life-threatening conditions and ticked off at the entire world/the hospital. Needless to say,it wasn't exactly peaches and cream having to listen to that 24 hours a day.(they need private rooms) They gave me an IV for hydration and I got about 8 hours of sleep,despite the wake-ups and blood draws.

Next day,the NP came in and said that my echo had shown periocarditis (caused by a virus)and the cardiologist would be by to talk to me about that. I could possibly go home that day if I wanted to,but my mag levels had dropped to 1.0 and I needed a few grams of that.(through IV) The treadmill test was cancelled because they knew what was going on. I did want to go home, and since I knew what I had and that it wasn't something that would likely kill me. I just really needed to talk to the cardiologist about what the plan was,going forward, before I went anywhere. The cardiologist eventually came (6:30 pm-I was the LAST patient he saw) and we talked about the echocardiogram results. He said he still felt it was mainly a virus causing me to feel crappy,much like a cold virus would do(I had a cold about a week ago,but it's long cleared up). The echo needs to be repeated in another week,to make sure the fluid has cleared but there was not a lot of fluid in there and it hasn't affected the function of my heart. Soooo,basically I rest and recuperate. My friend came and picked me up (7:30'sh) as I got discharged. It's good to be home,but I still feel pretty crappy. If he's right,the virus will pass in 1-2 weeks,the fluid will reabsorb and I'll start feeling better. Meanwhile we have a babysitter for the days this week because I'm still in no shape to care for my toddler. I very much appreciate the people in my life who are helping me out,as well as my FB friends..I do not know what I'd do without them.








(It's 5 o'clock somewhere..while you wait on the doctor!)

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