Tuesday, January 13, 2015

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.

Wednesday, December 24, 2014

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.


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

Saturday, November 15, 2014

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.

Friday, November 07, 2014

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.

Thursday, October 30, 2014

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.

Wednesday, October 15, 2014

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.)

Tuesday, October 14, 2014

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.

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.