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.