Turn Around

The past few weeks have been..hard.

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

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

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

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

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

Unconferencing the Ve(gas)ness

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

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

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

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

Four Things (meme)

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

Adel-head-brother 

Peggy-brother

Heidi-Who(my dad)

Splenda(the hubs)

2. Four jobs I’ve had: 

babysitter 

Childcare center worker

Retail Distribution Center worker 

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

The Sound of Music(#1)

Mary Poppins

A Man Called Peter

Chariots of Fire

4. Four books I’d recommend: 

Little Women

Sweet blood

The Kid who ran for President

The Kite Runner

5.Four places I’ve lived:

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

6. Four places I’ve visited: 

Copenhagen, London, Niagara Falls,Hawaii

7. Four foods I prefer to not eat:

Squash,Sushi, Lima beans,cranberries.

8. Four of my favorite foods:

Chocolate

Ham

Anchovy pizza

Mashed potatoes

9. Four TV shows I watch: 

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

10. Four things I’m looking forward to: 

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

11. Four things I am always saying: 

It is what it is.

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

Splendid dreams.

Come here right now.

The Coldest Night

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

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

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

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

In Defense of Kids(Everywhere)

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

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

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

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

Be(ing) Me, Bravely

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

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

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

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

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

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

Dear Santa

Dear Santa,

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

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

Love,

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

A Trip to the ND

 Yesterday was a wild sort of World Diabetes Day.

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

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

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

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

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

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

Way to much adventure for one day.

Project: Naturopath(etic)

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

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

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

The Facebook Rant

Facebook is an interesting animal.


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

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

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

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

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


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

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


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

Choose Your Own Adventure: The Health Plan Edition

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

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

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

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

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?