Wednesday, February 25, 2015

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.

Thursday, February 12, 2015

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.)

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 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.