Father's Day River Float

A couple years ago, my husband took me to float a local river.  Why would you go to the river when you could go to the beach, you ask?  I think most people OUTSIDE of California believe that the entire state is covered in beaches and palm trees.  In hopes of NOT coming across arrogant, I am pleased to say that something great about California is that we almost have it all as far as terrain/topography/weather is concerned.  In our particular area, there are no beaches or palm trees.  We live in the mountains and have a number of lakes and rivers in pretty much every direction and quite close to our home.  As often as I refer to myself as a gypsy and that I really don't have any roots, my husband has generously helped me plant new roots with him.  I can confidently say that regardless of my love for other places I have lived, this is most definitely the most beautiful area I have ever lived in.  Because I love the water so much, he often takes me to the rivers and lakes to appease my inner-fish.  Now...back to the river. 

Enjoying the river float as much as I did, I decided that my father would love it just as much as I did.  To the river we went.  Me, my dad and his little dog too.  A couple of years have passed and he's been itching to do it again (see?  I knew he'd love it!), so we planned yet another Father's Day river float with the rest of our family but this time no dogs.

2012



















2014

 












BG Pre-Float: 138
BG Post-Float: 111

Looking for Cancer

My Neurologist said that this antibody over-production is closely associated with cancer but he was very vague on which type(s), but the Mayo Clinic very specifically lists which ones:

1. Angenocarcinomas (breast, lung, prostate and GI)
2. Small-cell lung carcinoma
3. Thymoma
4. Lymphoma

SOMEHOW, we have ruled something out with blood tests although I do not know which.  In the mean time, I have to do two more major tests: a colonoscopy and a CT scan with contrast.  Today was my consultation with my (original) GI followed by my appointment for the actual colonoscopy next week...in the mean time I apparently have to go get some beverage from the pharmacy which will make me poop myself so I better grab some depends while I'm there...

Water Baby

Many of you know that I "grew up" on the Delta.  This would lead you to believe that I am skilled in all water activities including but not limited to: boating, skiing, wakeboarding and jetskiing.  You would be wrong.  I know HOW to do/use many of those things but I am most definitely not skilled and there are just some things I don't do.  Wakeboarding is one of them.  Why?  Cause I've just plain never tried!

So, fast forward to me being invited to a Girls' Day on the lake.  This was my first time on the lake, or boat for that matter, with my pump and although I had intended on getting IN the water, I was unsure of how doing any sort of water activity would go so I thought I would swim and spectate. 

It didn't take too much to talk me into trying to wakeboard for my very first time.  Mostly, I laughed because I know how bad of a snowboarder I am and I was quite certain I would never get up, but at least I could say I tried, right? 

I'm not going to try EVERYTHING life throws my way but after a year of being stuck in the house and/or hospital, there are just some things I would like to know about so after watching a few other girls - some successful, some not - what was the worst that was going to happen to me? A mouth-full of lake water and a bikini wedgie?  The answer is yes to both, but here's a quick video of my first wakeboarding experience and LET ME JUST SAY that if I can do it, anyone can do it:

BG Pre-Wakeboarding: 135
BG Post-Wake-boarding: 186

**Special thanks to my girl, Kimmy, not just for inviting me but for teaching me and encouraging me.  It's just what I needed**

T1D: Some of you have asked what I do with my pump while I'm in/on the water.  The pump itself is NOT waterproof (the sensor is), so I take off the pump to take a shower or a bath.  In events where I'm on a boat or on the shore and not directly in the water, I wear it.  If I think I'll get splashed, thrown in, or decide I want to go for a swim, it goes in a waterproof case of some sort (I currently have 2).  There are lots of cases available to protect your devices from water but these are the two I use:

One is a dry bag by Seattle Sports

The other is a Pelican i1010 - IN PINK!

 NO, I do not use this:

What does removing/suspending the pump do to my BG, you ask?  Good question!!  The idea is to keep the pump on all the time because of the continuous basal rate of insulin that the pump gives me.  If I remove or "suspend" the pump, I no longer get that insulin (in my case, 0.5 units/hour = 12 units/24hours) and my BG will increase. 

There are many ways to compensate for this but here are the most common, in my opinion:
1) I can reattach/plug my pump back in every so often and manually instruct the pump to give me my missing units - this is hard to do if you are actually IN the water for more than an hour
2) I can give myself a shot with an insulin pen or syringe for the missing units 3) I can wait for my high BG and correct for it - this is my least favorite as both low and high BG's can be hard on your body

Maybe It's May

We met with my neurologist last week and the great news is that my anti-body blood tests have been sent off, so we only have a 6 week wait to find out the results In the mean time, next week will NOT be my last IVIG treatment afterall. I will continue IVIG but less frequently (every 3 weeks instead of every 2 weeks). With that said, starting today I get to decrease my Prednisone from 10mg to 5mg and then hopefully in a month, ZERO! WOO HOO! Next month, I will begin some CT scans with contrast - apparently causes nausea, YIKES - for more cancer testing. That covers my anti-body situation for the time being!

Now for the T1D: I am having an obscene amount of unexplained LOW blood sugars without change to diet, medication or exercise - yes I am more active but this does not occur during those times of day!  Yes, I have adjusted my pump ratios.  As much as I hate having low blood sugars, my doctors cannot explain it and are chalking this up to the possibility of my pancreas beginning to work again.  None will make any promises as there is no current test to prove this but since other organs are beginning to work again, they cannot rule it out. I don't want to get my hopes up so...WE WILL JUST SEE. I appreciate all of your encouragement and so many of you who have included me and invited me to do things with you. On that note, let me invite you to join me for a special event!!

I will be walking in September - Step Out: Walk to Stop Diabetes- please join me if you will: TEAM CAUSE I GOT HIGH (for those of you who don't get it, "High" as in Blood Sugar). I believe it is a short 2 mile walk around the Capitol in Sac. on Sept 27.

IVIG May 15 (10mg prednisone):

BG Pre-IVIG: 113
BG Post-IVIG: 146

IVIG May 29 (5mg prednisone):

BG Pre-IVIG: 103
BG Post-IVIG: 110

Jolene's Team - JDRF

Today I did my very first 5K with T1D!  No, I didn't run but I did walk as fast as I could (with my busted foot from our Euro-Trip) with 3 other teammates - Jolene's grandparents and my amazing husband!  Here are today's participants for Jolene's Team with Jolene in pink in the middle!

That's me on the left - #41 and my pal, Jolene in pink in the center!

BG pre-walk: 195
BG post-walk (as I crossed the finish line): 75

I got to have an entire apple with no insulin.  YUM!  It doesn't feel great to have lows and then highs - when you're in the midst of a low, it's hard to THINK, let alone calculate just how much of what you need to eat/take to get your BG regular again!  I did have my staples with me (honey, juice and tablets) but an apple hit the spot!  GREAT JOB JOLENE'S TEAM!

Here Comes The Bride

As many of you know, we were invited to be the God-Parents at our close friends' wedding...in Romania.  WHAT?  Yes, Romania.  And what a trip it was!!  My amazing husband and wonderful mother joined me on this trip where we visited Austria, Hungary and Romania. 

My husband and I on the left, Bride & Groom in the middle and the other God-Parents on the right!

What an amazing and beautiful experience!  We had no idea what to expect but we couldn't be happier to have been invited to participate in such a special event.

Now...for you T1D's and traveling: there are LOTS of tips out there from numerous Diabetes websites and groups and if you are wearing not just an insulin pump but also a sensor, please be aware (if you are not already) that the connection between said devices is the same as cell phones - 900 mHz.  In the USA, cell phone blockers are illegal to use (not to own) but this is not necessarily the case outside of the USA.  A cell phone blocker will disrupt the communication between your devices and/or scramble your data.  There were multiple locations on this trip where my sensor "freaked out" or gave me some seriously incorrect reading, if not completely dropped communication for no reason.  On TSA's website, they do warn you that they can ask/tell you to turn your sensor off not just in the airport security line but also on the airplane itself.  May I recommend that if you have weird readings or disruption that you just go ahead and do this for a couple hours?  I don't know about you, but false alarms every 5 minutes are not only frustrating but exhausting. 

Moving on, EVEN IF you can calculate carbs like it's your job, expect to do some guessing while traveling - you're not going to get it perfect every time and you just need to prepare yourself for that.  And you're probably not going to get that juice box through airport security, so buy an OJ when you get through and have your tabs handy!  I also brought along packets of honey which tend to be very fast-acting (I wrote the carbs on them in advance so that if/when I needed them I didn't  have to "think" so hard) and are easy to bring through all airport security. 

ALSO - the pat down.  Medtronic Diabetes told me directly that going through any airport scanning device voids the warranty on my brand spanking new miniMed 530 G.  YIKES.  Whether it will truly ruin it or not, I don't know but if you are getting the pat down like I am, make sure you know how to ask for it...in the language spoken in the airport you're traveling through. 

Dirty 30

This is my 3rd to last scheduled IVIG treatments before we do blood tests for antibodies again!

This will be my first IVIG using insulin pump and continuous glucose monitor (CGM).  I feel like the last two weeks have been a success = better blood sugar and less extreme highs and lows!

Now, to answer some of the questions you've been asking:
-No, it is not surgically implanted, yes I move it myself every 3 days.
-Yes needles are required but no I do no poke myself nearly as often as before.
-Yes it helps predict and anticipate my blood sugar, no it does not automatically give me insulin (although it does make suggestions on what I should take and when).
-No the pump isn't water proof so it comes off for a shower or swim, yes the CGM is waterproof!!
-No it doesn't sync with my iPhone but yes the two devices do talk with one another.
Special thanks to my T1D pal, Tara, for the extra/much needed advice!! I still have a long way to go but thank you ALL for the support and kind words. 
 

IVIG April 2 (10mg prednisone):

BG Pre-IVIG: 116
BG Post-IVIG: 181


IVIG April 16 (10mg prednisone):

BG Pre-IVIG: 175
BG Post-IVIG: 142

IVIG April 30 (10mg prednisone):

 

BG Pre-IVIG: 147
BG Post-IVIG: 89

**Happy 30th Birthday to my baby brother**

Training Day

I have had my supplies for 2 weeks but I can't get an appointment to get "trained" by the Medtronic representative in my area until now.  I'm not gonna lie, I've been practicing wearing my pump because I just can't quite figure out where a comfortable place is to wear it.  Circa 1998 I had a super cool pager and proudly wore it EVERYWHERE.  Will this be so different?


The suspense has been killing me and I've done ALL of the online training videos.  I realize that it is likely a liability thing, but I don't see what is stopping me from inserting the pump and getting this thing started! 

Today I get trained on the pump.  My nurse has a last-minute family emergency and won't be there, but I'm still meeting the trainer at her office.  This seems weird but what do I know! 

Last BG Pre-Pump: 133

An Elephant Never Forgets...

...HOW TO RIDE A BIKE!! I rode my bike for the first time since I don't know when. My parents and wonderful husband took me out on a ride and I made it 7 miles.  Now my legs are like gumby. No doubt other things will be sore tomorrow!!! But YAY for my amazing husband who got to ride his new bike tonight too!! — feeling exhausted.



BG Pre-ride: 119
BG Post-ride: 133

Move It March!

This is an exciting month of activities!  The T1D asked a lot of questions at my appointment but I'm not sure where this whole "qualified candidate" thing came in.  Everyone said I had to qualify but she basically asked if I wanted to go on the pump and I said yes so we moved right on to which kind I wanted!  She was not pleased with my BG's and agreed that the pump could help me.  We're moving forward with Medtronic's pump.  I understand that the Dexcom sensor may be slightly more accurate but I like the idea of the complete system that Medtronic offers so that's what we're going with.  Check it out here (click on the pic to go to the website - and yes, I'm considering pink!): 

March 5 IVIG (10mg prednisone)

  

BG Pre-IVIG: 128
BG Post-IVIG: 206

March 19 IVIG (10mg prednisone)   

BG Pre-IVIG: 239
BG Post-IVIG: 208

Pumping It Up

My BG's are crazy.  One minute I'm fine (140) and the next minute I'm having a 34. This repercussion of this is that I take something - juice, candy, some sort of sugar - to get it back up but I don't know if I'm still dropping and/or how much to take.  And just how much active insulin do I still have in my system?  It's been 3 hours and 42 minutes since I last took insulin...so JUST HOW MUCH is still in my system? 

I want to go on the insulin pump.  I've decided.  What exactly is the hold up?  If my A1C is in the high 7's (okay, 7.9) and the pump allegedly gives you better control, why hasn't anyone (my doctors/nurses) recommended that I use it?  Then I guess the next question is: which one do I get?  


To be perfectly honest, it isn't the pump that I want.  It's the sensor.  I feel like both my husband and I would feel better having an idea of what my BG is doing without pricking my poor little fingers, palms or even toes every 30 minutes.  All right, I don't do it every 30 minutes but there are definitely days where I have to check more often than others because I "feel funny" or I want to do something but I don't know if I'm low or high and the facts are that activities DO have an affect on your BG!

Today I meet my new T1D nurse.  She apparently is supposed to evaluate me and tell me if I am a "candidate" to use the pump.  What does that even mean?  It's MY Diabetic life, why don't I get to choose?  No one I know of on a pump says don't do it, they all seem to love it.  And if I want to stop using it, I can, right?

Today's BG's:
Breakfast: 227
Lunch: 162
Dinner: 160

I'm down to 12 units of Lantus (9am) and a 1:7 ratio of Novolog for meals.

Look Into My Eyes

I had my annual eye exam today.  Remember when we only went to the eye doctor when we had a vision problem?  My endocrinologist expects me to go annually to get my eyes checked because of a little thing called: Diabetic retinopathy (die-uh-BET-ik ret-ih-NOP-uh-thee).

This is a complication of diabetes that affects the eyes and is caused by damage to the blood vessels of the light-sensitive tissue at the back of the eye (retina) and ultimately causes blindness.  ANY T1D or T2D can develop it. The longer you have diabetes AND the less controlled your blood sugar is, the more likely you are to develop diabetic retinopathy...SO...to the eye doctor I go!  And good news it is.  Not only do I NOT have any retinopathy, I do not have any changes in my vision.  Thanks doc! 

Below are pictures of my retinas so that you can see what they look like (photos coming soon)

The Month of Sugar...or Love...HELLO FEBRUARY

Before our Colorado trip, my BG average was around 190.  Not great, I know but I've struggled with the ever-changing BG's due to steroids and other medications I have to take.  My endocrinologist has been helping me adjust my numbers as these changes occur but during our trip, I had some SCARY lows. 

Believe it or not, I woke my husband up in the middle of the night with a BG of 22.  I could barely even prick my finger on my own.  He had to help me.  With a mouthful of sugar, I began to pass out.  He raced upstairs and brought me back a jug of Simply Orange Juice.  I drank 1/2 of the jug before we re-tested.  BG = 20!  WHAT?? How was it still dropping?  I had no active units!!  After drinking the rest of the jug, I finally stopped sweating and was able to see again.  By now, I'd had an outrageous amount of sugar and an overly-full stomach of orange juice.  I was so full, I was completely bloated and rolled around the rest of the night in pain.  NO DOUBT, my BG was over 300 but we didn't care - high was better than low.  In the morning, I was back down below 200 so we didn't worry about it.  Think it's time to change the ratios???  Yeah, us too. Prior to and during to this trip, I was on 18 units of Lantus (9am) and a 1:5 ratio for Novolog.   

We barely got back from Colorado and basically went straight to IVIG.  I don't sleep well, but then again I haven't for months.  Because I get IV Benedryl, it makes me drowsy during treatment so I usually get a 1 to 3 hour nap in during the day.

February 6 IVIG (10mg prednisone)


BG Pre-IVIG: 141
BG Post-IVIG: 148

February 21 (10mg prednisone)

BG Pre-IVIG: 234
BG Post-IVIG: 246

Hitting the Ground Running

I learned a lot in 2013.  More than I could have anticipated and not just about my health!  Here are some things I learned:

1) I have a LOT to be thankful for.  At the top of my list is my husband.  No doubt I have completely tested his patience in 2013, but these steroids just may be the straw that breaks the camel's back!  AND I'M NOT DONE YET!! I'll be taking them until June, for sure!!  I'm annoyed with myself - I do not envy his position.  My health, yet another thing we often take for granted, is another thing I have to be thankful for.  You don't realize how valuable things are until you are without them.  If you don't have your health, you pretty much don't have anything.  My family.  Every single one has been nothing but supportive and proactive in helping me get better.
2) How strong my body is.  Despite complete loss of body fat, I lost a TON of muscle mass and my body was pushed to the point of failure.  I was sure that so much damage had been done that many things would not recover.  I was wrong.  I am seeing recovery daily (slowly but surely) and am constantly amazed at the things this little body is capable of. 1 Corinthians 10:13 is often misrepresented.  It's about temptation and not being tempted beyond what you are able to withstand and not about your body's physical strength...what you can handle physically/emotionally/mentally...but if it WAS about what my body could handle and what God "gives me", I'd say that God must think I'm some kind of badass.3) Who my friends really are.  We often take this for granted but when you find yourself in a time of need/suffering/pain/crisis, the people who truly care about you step up and those who don't fade into the shadows.  It is difficult to come to grips with such things but this is a reality of life.  Time, distance, life...these things and more change our relationships and who we are.  I know that I have changed but in the time I have left, I intend on making the best of it.  I appreciate all of you who have checked in on me, helped me, encouraged me and loved me during the time I needed it the most.  There are no word to truly describe how much it means to me.

4) Nurses.  Yes, I'm happy to have doctors but the nurses do a LOT of the work and they are the ones you deal with on the regular when it comes to health complications.  Nurses can also make or break your experience.  Be nice to your nurses, they're the ones that are going to help you!!

5) The worst thing you have experienced is the worst thing you have experienced.  I know that sounds funny but it's the truth.  We can only go off of what we've experienced.  It doesn't mean we can't learn from what other people experience but it doesn't have quite the potency or full effect until we experience it ourselves and this covers SO MANY aspects of life. 
6) That people make a lot of excuses NOT to do things.  I'm not going to be one of those people.  I've done a lot of things in my 31 years and I'm not done yet.  I'm not going to rant about this but I am going to say that IF I CAN DO IT, YOU CAN DO IT.

Okay, so I've learned a lot of other things but let's move on to a NEW YEAR!! 
We started 2014 with a plan!  Not only would I be a healthier version of myself than I had been in 2013, but we were going to DO things.  I missed out on so many events in 2013 due to my "health" or lack there of, that I want to go places and see people.  We have been told there will be in the upwards of 10 weddings this year and three 1st Birthdays as well as a couple new babies coming!  Did I mention that we missed our favorite trip to Kauai last year and we'd really like to go??  That is...as long as it doesn't interfere with IVIG. 

In the case of my antibody problem/auto-immune disorder, IVIG is a distraction to the system - the idea is that by putting an over-whelming amount of new antibodies into my system, my body will stop focusing on producing the very specific AChR antibody and over time, the amount in my system will decrease.  I have 12 IVIG treatments scheduled for this year before my antibody level is tested again.  I do miss plasmapharesis as it was so effective so quickly but I cannot complain since I feel SO. MUCH. BETTER. 

**Plasmapharesis completely removes all of your immunity.  The problem is that they can't just remove ONE antibody, they have to take them all and steroids breaks down immunity so with that combination, I was HIGHLY DISCOURAGED from being around: sick people (duh!), animals and small children. Really? The answer is yes to all 3.  This kept me home and away from many of you - not your fault, just a consequence of my situation.**
This year, oh this year, I was "approved" to do whatever I wanted to!  Thank you IVIG!  I will be posting pictures of my "progress" along with the steroid dosage for your reference:
January 6 IVIG (30mg prednisone)

 

BG Pre-IVIG: 143
BG Post-IVIG: 141

January 22 IVIG (20mg prednisone)

BG Pre-IVIG: 175
BG Post-IVIG: 138


T1D: I asked my endocrinologist and every nurse at the infusion center if IVIG would have an affect on my BG.  ALL SAID NO.  What do I notice hanging below my IV? A cute little bag that says "5% Dextrose".  Know about it.