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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The Type 1 Connection

Why are there so many songs about rainbows
and what's on the other side?
Rainbows are visions, but only illusions,
and rainbows have nothing to hide.
So we've been told and some choose to believe it.
I know they're wrong, wait and see.
Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me.

Who said that every wish would be heard
and answered when wished on the morning star?
Somebody thought of that and someone believed it.
Look what it's done so far.
What's so amazing that keeps us star gazing
and what do we think we might see?
Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me.

All of us under its spell. We know that it's probably magic.

Have you been half asleep and have you heard voices?
I've heard them calling my name.
Is this the sweet sound that called the young sailors.
The voice might be one and the same.
I've heard it too many times to ignore it.
It's something that I'm supposed to be.
Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me.
-Kermit the Frog in the Muppets "Rainbow Connection"

I think a lot about diabetes,and not just because I have to..I wonder more about the mysteries of autoimmunity. Type 1,is,of course,a serious muck-up in the list of possible muck-ups but it rarely stops there. Diseases such as
Celiac
Hashimoto's-both over,and under,active thyroid
Addison's Disease
Multiple Sclerosis
Lupus

as well as asthma & food intolerances/allergies seem to run rampant in the type 1 community.(and those related to them) It seems to me that so,so much of it is genetic...and then there's that small,small subset of human beings whose only medical problem is T1...and no one else in their 5-10 siblings/extended family has it. (And what about those people who literally eat buckets of simple carbohydrates a day,yet their robust pancreas happily trucks along to a ripe old age,never failing to deliver)And then there's the whole "age at dx" gamut...ranging from hours old(!!) to 70+(I honestly dunno who the oldest person to get type 1 was.) Scientists/researchers have little clue why one really get it when one does.(breast milk does not prevent it...formula doesn't cause it,some people have viral like illnesses that provoke it,some people have antibodies, some people live in places where it seems like it is caused by the environment.)But it also seems to me that the more autoimmune drama one has in their life,the more likely it is to be passed on to offspring. Perhaps we will never understand the "whys," and really, I'm ok with that..if we could only cure the durn thing. But the other autoimmune diseases still crop up,still complicate lives, they can't be ignored. We need to understand a lot more about why the body attacks itself to be able to develop therapies to treat (and prevent) it. (And them)I think that there may be multiple paths to a cure,tailored to that particular PWD..someone dxd at 2 may need a different therapy then someone dxd at 45. (This is why I think there are many triggering causes...not just the "viral" one. We all have some immunity, but it seems like the bar on some peoples is extremely low, to get diabetes so young.

Somewhere out there,is an answer to this autoimmune mess...and I have faith that we'll find it,one day.




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Dear Miss Manners: It's not the Hunger Games

Dear Miss Manners,

Allow me to introduce myself. I am a wife, mother (to a very small child) daughter, friend, Chevy driver, lover of all things Diet Coke, and future nurse.. I, like many People With Diabetes, wear many hats. I check blood sugars and take shots (when warranted, but normally I utilize and insulin pump) to ensure my safety and the safety of those around me. I do it for me, and my loved ones.

Somehow, I get the idea that your knowledge of diabetes may be slightly impaired, or even downright non-existent.

"oh, don't diabetics take shots? And blood test..once or twice a day? This can be done discreetly, away from squeemish eyes." (common diabetes misperception)

It's not like that, Miss Manners. It isn't 1959 anymore, and many people with diabetes can take 4+ injections a day (if they do not use an insulin pump). Diabetes care has improved dramatically, and the recommendations (along with the desire for good control) has many people checking blood sugars 4 or more times a day. I personally check my blood sugars 7-10 times a day. I wear an insulin pump, that looks every bit as hip and modernish as the actual year. (it's 2014, get with the program) Needles don't bother me, and they don't bother my non-diabetic husband/son/or friends either.

And now I'm going to let you in on a little secret..
(post checking my blood sugar, I DO NOT:)
.. slit my wrists, war paint my cheeks, or smear blood all over the airplane seats. It is not a scene of mass carnage, it is a simple miniscule blood droplet(like a pin drop)...and easily blotted clean on a nearby tissue. Done. I daresay you've probably shaken hands with a person with diabetes at some point, and perhaps that person with diabetes checked their blood and did not wash their hands afterword.(For the record, most of us don't have AIDS or anything else communicable) It's not as disgusting as you might imagine it to be, and I'm sure that you've probably never seen a person with diabetes doing any of that.)

When I was pregnant, Miss Manners, I would check my blood sugars up to 15 times a day...all to ensure a healthy baby. Have you ever visited the bathroom 15 EXTRA times a day in addition to the state of having a pea-sized pregnancy bladder? That, in addition to even more shots? I didn't think so.) Simply put, it is hugely impractical to have to visit a public restroom many times a day just to perform needed medical tasks.

But what bothers me the most is the message that you are projecting to young people with diabetes. I was there once, alone and ashamed about my disease. From the beginning, they feel "different" and society equates syringe use with illegal drug related activity. Young people can become ashamed of their disease. This leads to hiding it, depression, isolation from their peers, and perhaps even being mistakenly arrested. I am not ashamed of my diabetes or doing what I need to stay healthy. But others haven't had that level of support and nutering to be comfortable with being out there in the open with it.

It's 2014, Miss Manners. It's a new century...and diabetes deserves a fresh outlook, a disassociation from the "don't ask, don't tell" policies of the mid 1900's. Diabetes isn't something to be ashamed about, it's not dirty, and shovelling it back to a filthy bathroom stall does a disservice to us all. Caring for yourself (and others) is one of life's most beautiful things. Isn't it time to move forward, not back?


Sincerely,

A Type 1 Person With Diabetes (for 15 years)

On Scientific Debates

I don't consider myself to be an uneducated hillbilly..by any means. My family has engineers and a physicist,computer programmers, a nurse,a Marine...3 PHD's. I don't think you can pigeonhole a certain lifestyle onto a group of people who believe a certain way. I happen to believe in Biblical (6 day) creation, although many scientists believe in evolutionary(million of years) creation. My husband works in a place that has many such people (who don't consider themselves to be religious) who believe in theistic evolution..why,because while science is still the biggest belief in their life the evidence still points to a higher power that set it all in motion. These people aren't stupid either..they have PHD's in mathematics,physics,etc.(and they are helping to run the gov't of the United States) Sometimes their study of science leads them to their Christian faith. 

      “I was a young man with uninformed ideas. I threw out queries, suggestions, wondering all the time over everything; and to my astonishment the ideas took like wildfire. People made a religion of them.”

-Charles Darwin

but for the most part,it is a faith that has to be relegated to the non-professional areas of ones life..to admit that you believe in Creationism /God is social suicide. (Freedom of choice?its a joke)Universities won't hire you,you are ostracized and looked down upon as stupid. Yes, discrimination is real, and you cannot really dare to voice any sort of opposition against the world wide religion of evolution. And giving students a "choice" to let them decide for themselves is rarely done.(outside of the Southern US)

Charles Darwin himself knew that he was trailblazing a new belief,and in a world where change offered a chance to break free of religion this choice was jumped on by the majority. I'm not a PHD and I don't understand the specifics of why exactly one would care to believe in an unspecified Supreme Being that doesn't care to be involved with the Universe past the initial whatever (one might think that they'd want to know more).  It's true,nobody was there, nobody knows what went down. My faith leads me to believe that God created the Universe, whether by 6 days or a million years is rather irrelevant(but there is no reason for it to have taken millions of years) the point being, life must always have existed in some form..not from swirling dust particles. If that makes me stupid,well,so be it. I'm actually NOT stupid,I've read a ton on the subject from both sides of the aisle..but I can see why people choose to call me that..if you do not understand something or to acknowledge the possibility that there may be a god then to you, there really is only one option,and that is evolution.

End rant.

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2 Years & 3 Days

 

This is my now 2 year old..hard to believe it's been that long! It was a rough first couple of weeks for him. After the 3 am c-section, they monitored him with me for the first couple hours & when his blood glucose started dropping, gave him formula. That didn't work so they placed an IV & gave him Dextrose. That worked, but then his temperature started dropping so they placed him on antibiotics until cultures came back negative for infection. (That took a couple days) Cultures came back,they took him off the antibiotics and then his bilirubin levels started to rise (getting into the moderate range) so they treated that with phototherapy which effectively brought levels back to normal the next day. His temp came up a little bit, but after a small surgical procedure it dropped again & it was 3 days after that before it had come back up to where he'd be ok out of the hospital. He was discharged on the day before my due date.( a full 9 days in the hospital) I don't know if D had anything to do with it, I've never heard of any other normal or large D babies having this particular issue. Pediatrician said that he likely just needed those few extra days to incubate/regulate his temp. He was born at 38 wk 4 days, and weighed 7.3 lb.(aka the largest, most developed, kid in the NICU) it was still hard to have him in the hospital for so long & I cried every day for weeks. I really didn't have a reason to cry compared to some of the sicker the sick kids I saw in there but I did anyway, it was all very overwhelming. But he did get out, & my mom literally saved my life...driving me to the hospital to see him,fixing meals/helping with the baby & doing everything else when I got pneumonia & could barely drag myself out of bed.) Eventually I got better,& life became as normal as life with a baby gets. I'm so glad that there were no lasting health effects for him from that. If I could have told myself something prior to all of that, it would be not to get so upset over every little bump in the road...enjoy the journey. So many people never get to bring their babies home from the hospital. My post-pregnancy hormones were on a roller coaster, there was no hope of getting me to see things logically. I still think that it's sad that NICU babies aren't treated the same as a normal healthy baby, nurses who take care of you just see you as the patient, sans baby. And that hurts.

Still on my Tslim pump. Switched insurances, so I am going to have to start using Humalog when my current Apidra stash runs out. It's always fun finding out what your new insurance doesn't cover.

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Dday: In the Next 15 years

In 15 years I've leaned that diet coke and sugar free gum (together) taste like stinky socks.

In 15 years I've learned to stand up for myself with every HCP I've met. Sorry, but I know more then you do.

In 15 years I've traveled to Hawaii, Canada,Denmark, England..with a few hours in Amsterdam to boot.

In 15 years I've dated three guys, married one guy, and celebrated wedding anniversary #6.

In 15 years I've given blood 43 times.(can't do it anymore,due to the magnesium issues)

In 15 years I've had between 80-100 magnesium infusions.

In 15 years I've passed out from lows 4x. My lowest low was under 10 mg/dl,and I've had a 12 & 19 as well. I've never had a number in the 20's but probably every other on the meter(30 on up to 600)...I've been there.

In 15 years the smell of Kendall alcohol swabs still smells like a flashback diagnosis.

In 15 years I've been to diabetes conferences & met many,many,many, good folks with diabetes.

In 15 years I've become very addicted to diet coke.

In 15 years I've gone from Regular/Lente/45 second meter to a Tandom insulin pump/Verio meter.

In 15 years I've gone through a successful pregnancy & have a very active almost 2 year old little boy.

In 15 years I've had 4 endocrinologists.(#4 for 6 years now)

In 15 years I've gone to two community colleges, became EMT-B certified,had a brief stint doing EMS, and failed out of the RN program at the end of the 3rd semester.(with only 1 to go)

In 15 years I've participated in 3 diabetes & driving studies, 3 Artificial Pancreas studies,1 " D & Vit. C" study & 1 injectable polypeptide study. None of them managed to kill me.

In 15 years I've rafted the Colorado, felt the cool mist of Niagara Falls, waded in the frigid North Sea & baked like a lobster in the glorious Hawaiian sun.

In 15 years I've had 7 surgeries.

In 15 years I've had two paying jobs,neither of which I liked.(daycare & sweatshop,take your pick)

In 15 years I've seen a former Prime Minister, a Queen, & a US President in person.

In 15 years I've learned that you can never have too many carbohydrates on your person.

In 15 years I've pricked my finger thousands of times, gone through my body weight in insulin(I'm sure) peed on strips and sticks and all sorts of things..injected sharp things into my body thousands of times,& resorted to eating Tums when there was nothing else available to treat the hypoglycemia.

In 15 years I've voted in three presidential elections and 10 state ones.

In 15 years I've owned 18 different meters.(yes,it's a bit of an obsession..I cannot say no to a free meter)

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In 15 years I want to travel to Europe, ride elephants in Asia, count Kangaroos in Australia, and go to an Olympics.

By 15 years..I want to have another baby.

In 15 more years I want to be cured.(or at least have an artificial pancreas)

In 15 years I want to have a nursing degree& specialise in pediatric pulmonology.

In 15 years I want to be healthy,more so then I am now..and free from D complications.

In 15 years I look forward to having all kinds of adventures with my family!( I want them to all be happy & healthy as well)

In 15 years I want to have my book published.

In 15 years I want to run a marathon.

And I want to meet more PWD...as well as stay in touch with the ones I know. Thank you for being there.

Bring on the next 15 years.

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November Dayz

What if diabetes were more like Choose Your Own Adventure & less like "I've been doing this for a decade and a half & I am just plain TIRED of it?" Tired of the monotonous day in,day out,check sugar/low/high/crapcrapcrapness of it all? (With no sort of consistency,ever. I believe that's called stupidity.) If diabetes were more like Choose Your Own (Happy)Adventure, the hardest decision I would ever make would be between Spa Day & Turning Myself Into a Beach Bum Day. There would be no side trips to the land of frustrating pharmacies that never have my RX's in stock, no 4 am pump site failure bladder wake up calls, and no comments from people who think PWD will keel over dead if they consume sugar. Ahhhh, that would be the life. Diabetes Nirvana all around.

Unfortunately, I live in the real world. I've decided that I now loathe CVS pharmacy...(the rest of the store is actually ok)I always have to wait in line 20+ minutes to discover my auto filled RXs are out of stock, not covered,costs 4x as much, can't be filled this month(what the heck? I have filled these every month & nothing has changed) etc. Its not the employees fault so going postal hardly would help the situation. It's the crazy system they've got. I really need to switch to another pharmacy,it's gotten that bad.
(Just a day in the humdrum life of a PWD)

We are flying out again to California for Thanksgiving. I have got to work out a system for toddler containment, or things will be very, very bad. It's not the screaming that's the issue(gotta love sweet little old ladies who pat your arm & tell you that the poor things ears hurt,& that's why they cry,& they will soon go to sleep). No, that's not how it works. My toddler is perfectly capable of screaming/squirming/slugging his little 26 lb self for all but(brief nap) 30 minutes of the 6.5-7.5 flight to L.A. (I'd love to let them see this, but they oddly seem to dissapear into the black hole of the plane.)Kids don't like it when they can't run around & get kid energy out. (And nothing will amuse them, save pulling another passengers hair or throwing their toy to the opposite side of the plane.) Yes, he is 22 months old & 110% high energy & quite frankly, nothing works at that age & level of development. (Unless you've had one, please don't even pretend to know what this is like. I love my child, but he is very stubborn, & there's not a punishment on earth that can stop this kid from going bazooka.) Containment, & earplugs, are key to our survival on this trip.(I hope the car seat will fit in the seat) Not having to change a poopy diaper on the lavatory seat would be awesome as well.(yep,sometimes the planes don't even have changing tables!!)

Sent from my iPhone

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The Tubing People

"Hey, is that an insulin pump?"

It is.

"I've been trying to get my dad to get one. How do you like it?"

It's great..really cuts down on my highs and lows.

"Where does the insulin go?"

In a hole, right there, see? You inject it into a changeable cartridge every few days.

"Well that's so cool! And thank you for shopping at Kmart!"

(Guy behind me looks mildly annoyed at the amount of time I've been there ringing up my purchases.)

Have a nice day!

-------------

The thing about being on a tubed pump versus the Omnipod is that you become a homing zone for every other pumper or relative of a PWD. (Or nosy instructor) It's not a bad thing, but you've got to be prepared to give a half way intelligent answer about why you are on a pump.

"Uh, I like my pump because I don't have to take injections anymore..." (That would have been the 18 year old me's answer. But really, it's a stupid answer because injections stop being the issue for most people round bout the 1000th shot(or sooner). Pumping is about greater life flexibility, making your insulin suit YOUR eating habits.(not vice versa) But usually, when some random person asks me about my D,the first thing to come out of my mouth is that first sentence. Unless it's another pumper(& in that case, we just pump bump & go on our merry ways).

Wearing a tubed pump is very much a putting diabetes out there in the open thing...with the Omnipod you just don't get that kind of a reaction.(Although I have been told my pod looked "gross" and "like a tumor". Thanks, lady.)

And I'm ok with that.(it makes for less of a lonely D-world,when you meet others with it)

 

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The Sweet, The Salty, & The Rogue Pancreas

I used to think that getting any disease that restricted the intake of certain foods would be the absolute end of the universe. I've always loved food(like 95% of the human race) & find it something to be enjoyed. Growing up, I lived on a farm(& thus was able to inhale vast quantities in keeping with my teenage metabolism). And then diabetes entered the picture & the first order of business was to get me to gain weight, a lot of weight, so they put me on a 2400 calorie a day diet & gain weight I did-52 lbs. (which took me out of the death camp look and into the solidly chubs look. Quite frankly, the insulins I was on did nothing to help me to lose any of that, it was "feed the insulin" pretty much 24/7. And then I went on a pump, and successfully lost 20 lbs (mostly just from not having to stuff my face so much) Weight stayed pretty stable, within 10 lbs for a number of years. Pregnancy (and turning 30) came, gained 45 lbs, lost 40 lbs pretty much 2-3 weeks post delivery. (Has stayed stable since) I'm happy with my weight, but I wish more of it were muscle.(being able to wrangle a screaming,kicking,psychotic 28 lb toddler up to bed hardly counts)

(Who doesn't love bacon? Even meatless bacon..if you're a vegetarian)

I love food, & I pretty much eat it whenever, wherever. Gluten rocks my universe, meat/cheese are must haves, and yes, I eat HFCS containing products, on occasion. (Anybody left reading this?)And I love my diet coke.( I think the only disease that I absolutely couldn't handle would be one where I couldn't have any soft drinks.) I'm aware that no one warns to give up gluten unless it is for valid health reasons, & my intent is NOT to make you hate me for waxing poetic about my love of gluten..this is just journaling thoughts from a person who has very little clue what a challenge staying GF must be. However, that being said, I know a lot of people lately who have had to go GF because of celiac disease and my knowledge on the subject has exponentially grown. There's still a lot of food that you can eat, and eating fresh fruits/veggies forces you to eat more healthy foods. (Fritos are GF. Win!!!!! I could live off that and homemade rice/Chinese-ish dishes the rest of my life, if need be.) Although I think I could accept celiac a lot more now (in my life, not affecting my loved ones) my screening test at Friends for Life was negative. I have other digestive issues...pseudo gallbladderitis (in June) which might be vaguely related to my stupid minuscule, disappearing pancreas. My Endo did some more antibody tests to further determine if my pancreas is still attacking itself(if so, at some point I will start having to take digestive enzymes because my pancreas will stop producing them. And glucagon will no longer be effective in a severe low.) If said pancreas disappears entirely, I will pretty solidly have diabetes(and any potential cure treatments that materialize I'd be ineligable for). Basically I might have diabetes for the rest of my life.(not that I was expecting one soon but eventually,yeah) The Artificial Pancreas would still be a major help in my life, though. (I don't mind doing the matinence stuff as long as the thing gives me a long, healthy life)

In the meantime, I'll drown my woes in bacon & diet coke.

 

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Dreams: On Hold

On the day that I failed nursing school, I kissed my husband & son goodbye in the wee hours of the morning, climbed into my car, & drove into the city to go to the hospital. As I was in the 2nd lane of the left turn lanes, following several other cars, preparing to turn left along came another car barreling straight towards me at what felt like ten billion miles per hour. "It's going to stop," I thought, not really expecting otherwise. That light for them was solidly in the red.

But it didn't stop. And by the time I'd processed this & swerved my car straight, it was like I could literally feel the whoosh of a near head on collision with said car. And then I went on to clinicals, had the absolute worst day in the history of mankind, and it was all over. But here's the thing..some might call me lucky(being alive is a hecka lot better then failing out of nursing school). I don't believe in luck, I know I've got a guardian angel on call 24 hours a day and I won't be leaving this planet until God deems fit. I won't say that failing has been easy to accept either, but I do know I'd make a good nurse(and maybe that will be as an LPN until I get whatever stuff together that I need to get together. The instructor made me feel a tad better by telling me that their program was the hardest one in the state,& students who have failed theirs have gone to others and passed.) It just won't be happening any time soon.

So now I'm 3/4 of an RN..starting from the beginning. The grief is still quite raw, the negative thoughts inhabit my nightmares each and every night. It is literally like a part of me has died. (And it's probably going to take awhile not to feel that way)

One day at a time.

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Of TSlims & Tantrums

Life is chock full o' crazy right now, it's the 6th out of 8 weeks in the Med Surg/Mental Health rotation. I'm not going to personally comment on what that is like, but I focus on two main things (exam prep, and surviving each clinical day without getting expelled from the program) & count down the days till the insanity will be over.(if it weren't the Internet, I could tell you a lot more) As for that little thing called diabetes..it's been downgraded to the very last thing on my to do list. I have absolutely ZERO time to deal with low blood sugars, and my bg average is pretty high. Survival dictates getting all your patient care done/charting in the computer/giving medications/ongoing assessments/nursing diagnoses care plans done in 5 hours that you are on the floor (& nobody dying)or you will get a plan for success. Fortuently, this insanity is only for a couple of days a week but it is tough. The goal is to turn you into a fast-thinking nurse, but when you feel like you don't know anything every second of every minute of that time it is really stressful. Not to mention the instructor has eyes like a hawk and if you even look like you might be having a low, you may get questioned/& possibly sent home. I really don't know how that even fits into the whole "diabetes accommodations" thing I have in place, but their line of reasoning is that those are the requirements of the program/what the real world is like.

Exam 3 is on Monday, and the final exam is in two weeks.

 

Several weeks ago, I made the switch to the Tandom T-Slim..I am officially done with Omnipod. The Rep stopped communicating with me(RE: my need for a new PDM, having gone through about 15 pods & figuring out that the issue lay with the device itself) and I couldn't reach any of the company higher-ups. Insulet is having both supply issues and new pod issues, so this isn't surprising, but the manner in which the area Rep treated me really ticked me off.(she said she'd get me a new PDM, and then just stopped talking to me. I left several phone messages,etc, with no response. The Tandom Rep confirmed that said rep is a bit of a mental case.) The rep came out to our house & ran through the nuts and bolts of things. (Because if I have to read anything else not connected with nursing school, my brain will explode)

Impressions:

Customer Service rocks. I had a pump within two weeks of faxing the info to Tandom. And my Endo rocks, for randomly just approving it out of the blue with no communication from me regarding my pump switch.

I really like this pump. The reservoir fill process is a bit lengthy, but not horrid. And I use Apidra without any clogging problems.

I love the bolus calculator(by which you can add up various numbers of carbs just by pressing the + button) So, so sleek and sexy.(also better for my control!) And although I'm not a fan of being retethered, it's actually better for control when you can bolus whenever and not have to physically be hunting for the bolusing remote. And although I don't hate Insulet, I am very disappointed in them as a company right now. A local friend is also on the Tslim & she encouraged me to go on it.(it's awesome meeting PWD who live literally 10 minutes away & go to the same Endo you do!) I highly recommend this pump..the days of scrolling through numbers is just SO 20th century.(it's all touch screen, with appropriate safety measures/locks in place)

So that's life right now...plus dealing with the govt shutdown, which put my hubby on unpaid furlough to who knows when.(we have savings but its still stressful) I really hope they clear up this mess pretty soon, I think both sides are at fault here. We can't keep spending ourselves(as a nation) into more debt, we need to trim all these extra non-essential stupid programs(jmo) and cutting waste. It's just pathetic.(and yet, we also need this agreed upon..these functions MUST go on, if we are to continue as a country)

 

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Nursing Student: Law 101

Tort. Assault. Battery. Neglect. These are words that make every nurse(and nursing student) break out into a cold sweat, to re-evaluate their chosen career. Because you see, the law is not kind to nurses..the law is brutal. You hear about all these terms, all the legal mumbo-jumbo and you're like "Whatev-I'm not a lawyer. I don't need to know that stuff."

But you do need to know it, & the biggest thing you need to know is that YOU DOCUMENT EVERYTHING that you did. Because if you don't document, it didn't happen. And maybe you've been a nurse for 25+ years and forget to document something & the hospital fires you and the nursing board revokes your lisence and you don't have the money for a court battle and you have to start over, find another career path. Or maybe the patient suffers actual harm, & you end up in jail.

(I don't think type 1's do well in jail. I think I'd be living at 300+ mg/dl in fear of collapsing from hypoglycemia, and probably not make it out alive.Nothing is under your control in jail,& when you collapse in your cell unconscious the guards probably just let you die.) Therein lies my biggest fear of nursing, and I think that would dictate a fairly low-stress ZERO CHANCE OF DISASTER nursing field. I hear stories of nurses who make just one mistake and their career/life is over,& it scares me to death. These are good nurses, & it happens just like that. But mostly I never want to end up in jail, with no freedom to manage my diabetes and having limited contact with the outside world. To barely see your kid, or your spouse, or anybody..it would feel like you were truly,truly alone. That would be the hardest thing ever. I wonder plenty if everything I don't know is going to impair my being a nurse(should that ever happen), and its just scary to think about the consequences of that ignorance/forgetfulness.

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