Thursday, May 31, 2012


It was so good to just get away: away from normal routine and to sort of "reset" everything mentally and emotionally.  It was a long overdue trip!

Francine's bridal shower Sunday was beautiful!  She deserves this whole experience so much.  It was great to see a lot of people I hadn't in a long time as well.  One big thing we did before leaving the area was visit the farm we both learned to ride at starting at ages 11.  It was so lovely to see Apryl, give all the horses mints, and pamper the old school mare, TT.  She didn't want to graze but we piled her feed bin with grass we hand picked and she was eating that as we left her all groomed and loved on.  She deserves to be spoiled!  I hadn't been out there since last July.  and the trip home including unpacking all my heavy and bulky medical supplies, plus our normal things, went fairly well.  Especially since it was just the two of us getting everything inside at 10p at night after a 5 hour drive!  I was amazed at how much I go through in a week, and actually I'd only packed 4 days worth of some things, and I still had my large duffel bag, a big tote, formula, and our our largest cooler.
Time giving me kisses!  He loves licking everything.

Once at her home, we visited her horses a few times, she boards them close by.  Saturday, we went riding double on her Thoroughbred Star!  He always knows when he needs to be extra careful.  I hadn't been on a horse since Apryl 10 months ago, and I could have shouted I was so happy.  Francine was fairly holding me on by the end of our 15-20 minute ride and it took me awhile before I could stand up once I slid off, but all in all I was very pleased with how I held up.

I was tearing up as we drove away-sometimes it does upset me because I miss riding so much.  Really riding.  You know, feeling their hind end engage as you ask for them to come underneath you and collect as you're taking a tight turn at a hand gallop, doing lessons and learning new things (while being scared to death), and tackling cross country fences and feeling that adrenaline.  Not being able to REALLY ride is one thing that will always hurt a lot, but so long as I can still be around horses, I find a way to be okay.
Beautiful Francine
Francine "driving" :) thank you Star, what a good boy!
Sweet Time

picturesque, peace, friendship
We also did some sightseeing, saw the Avengers in their towns neat old theater, watched horse movies, and just enjoyed each other's company.  Her wedding invitations arrived at her home soon after we did and I helped address her thank you notes from the shower.  Was so blessed to be able to help her with some wedding things.  Saturday night my blood sugar went up, like it often does due to one of my meds, and I had to stop my TPN because it was high for me, in the 230s.  I usually sit up with the lights on to stay awake when this happens at night, but I was so tired from riding we both fell asleep.  All night her service dog Rocket was so upset, running around on my side of the bed, lying next to me instead of with her, even whined once or twice.  Whining and acting up are NOT usual for her at all.  Francine scolded her and told her to lie down, so she got right next to me again.  I didn't really wake up til morning, and as soon as I did I felt completely terrible and realized right away what I had done.  But it's no wonder Rocket was having a heart attack all night, if I don't restart my TPN in 30-90 minutes I become hypoglycemic because TPN is supposed to be tapered down, I just can't obviously in this situation as it continues to climb if I don't stop it.  (I may need more insulin in my TPN it's just a hard balance as I tend to too low as well.)  Thankfully my body seems to regulate things given a matter of hours, I just feel awful for awhile.

Anyway, it was such a good diversion!  I held up so well and felt just fine all week, aside from that one blunder.  I'm amazed at how well I've been doing with the IV nutrition, and my worst is basically what my best used to be.  Big crashes just aren't coming even when I have done too much, without enough gas in the tank.  I just feel like I can keep going and going, within reason.
I have another trip hopefully being planned for this summer too, that I'm really looking forward too, as I haven't seen the family in probably 2 years now.  They're really special friends and I miss them so much!

I've been slowly working on packing for Milwaukee, and hopefully Tuesday is a very productive appointment with Dr Gisela.  I haven't had a bad one yet.  I have friends graduating this week as well!  It's fun to go and be an alumni after the challenge of earning it.

Have a blessed weekend!

Thursday, May 17, 2012

This is a topic I've been wanting to touch on in awhile, but I didn't want to do it when I was in a bad mood ;) So I'm doing it today!

Pain is apart of life when you have chronic illness; albeit it is apart of all life in this imperfect world.  The twisted part is that we often have to inflict it upon ourselves.  Within an hour of waking up, I've already poked myself multiple times-fun way to start the day!  I give myself shots and test my blood sugar.  I force myself to hit that "+" button on my feeding pump and then the "start" key.  (This increases how many milliliters per hour the pump puts into my small intestine.)  I have a feeding tube surgically placed directly into my small intestine.  However it barely moves on its own, so I take medicines that cause it to cramp and contract (MMCs/peristalsis) to try to get things to work properly: thus the shots, plus severe drug interactions.  I can change/fix my own feeding tube, which is another painful procedure, as the stoma you slide it in and out of is quite sensitive.  Another thing that must be done every week is a needle change in my mediport.  This port is my lifeline, delivering all of my nutrition and hydration each day, as I'm currently not tolerating feeds in my J-tube.  I am always trying though, I just upped my rate to 25 for the second time in about 6 weeks.  I've been running just mostly slow feeds at 8-12 ml/hr.  These are called "trophic feeds", and even that was a battle at first but it is good for your liver to do so when on IV nutrition called Total Parental Nutrition (TPN)

At times, it doesn't seem right to be the cause of your own pain, to be creating it!  Especially when things go wrong: hit a nerve doing a subQ injection, too dehydrated for an easy blood sugar test, miss when accessing your port and have to try again...being told to keep upping your feed rate or not go below a certain rate, even when it feels impossible.

My wonderful GI, whom I trust more than I can say, literally refers to it as "being a little bit mean".  She has a great balance though. I'm not expecting to feel fabulous as I have these problems and that isn't going to change; she's not going to do what isn't good for me.  For example:  I am not allowed narcotics, for any reason, except after surgery.  And that is limited, if I've had a central line placed, I can have it in the PACU just after waking up, and maybe a few doses after.  For my feeding tube placement I was definitely given enough, 7-10 days after we began to wean and I was still really hurting but it was reasonable.  My gut completely shut down in the days after surgery and I gave the surgeons a big scare, but she came right away!  Narcotics really slow down your GI tract.  So it's not good for me, or any dysmotility patient, to have narcotics for motility related pain as it's contraindicative.  That is being a little bit mean, it feels mean when you are at a "9" or even "10" for pain, but it's entirely necessary.  I'd just be in more pain in the end!  Running feeds sometimes feels the same way, but I know what I can and cannot handle.  I started asking myself, "what is reasonable?"  What symptoms are annoying vs. completely taking away my quality of life?

It's important to recognize that this changes.  Whenever it's time for TPN, a new drug (which lately includes fighting insurance), J tube, different or more IV fluids, the gastric pacer, etc, the decision is made before I am losing too much if any ground.  Backsliding can cause long-term problems and can take months for me to get back to baseline.  I know I've discussed this before:  It is so important to have doctors that will listen to you, AND hear what you say-because there is a difference.  They also need to recognize that you may have more than just the disorder they specialize in going on: while they don't necessarily need to be treating you for it like mine does, they do need to recognize the importance of any other issues you may have in your care.

By the way, thanks to TPN I am headed off for my Kindred Spirit's house this coming week--and plan on challenging myself!  I'm very excited and my body is just going to have to deal with all that we have planned. ;-)

Have a wonderful weekend, everyone!

1 Chronicles 16:11  Seek the LORD and his strength;  seek his presence continually!

Monday, May 14, 2012

at twenty years of age..

At twenty years of age
I'm still looking for a dream
A war's already waged for my destiny
But You've already won the battle
And You've got great plans for me
Though I can't always see

And on my own, I'm so clumsy
But on Your shoulders I can see

Sometimes I believe that I can do anything
Yet other times I think
I've got nothing good to bring
But You look at my heart and You tell me
That I've got all You seek, oh
And it's easy to believe

--lyrics from "Free to be Me" by Francesca Battistelli

This song was on the radio last Tuesday as we were coming home from physical therapy.  It'd been an exhausting day physically.  I'd started the day off with a bang, quite hypoglycemic and passed out.  I'm always not too smart, and stubborn, and do things like PT when I shouldn't but we have to cancel so much and my therapist is so wonderful about taking it easy on days when I need too. She's such a blessing in my life!

On the way home, the sun came out before a fresh spring rain had finished falling.  I was hoping to spot a rainbow for Nina, as she loves them but rain is rare where she is.  When I'm really, really unwell I tend to see things more poignantly: a redtail hawk catching the wind, how beautiful the dark bark of the trees in the woods look after a rain, animals scurrying from shelter to shelter.  

This past week I made a big step towards crossing something big off of my bucket list, I am 1-2 unanswered questions away from having a complete application ready to submit to my local community college!  It's for the Fall 2012 semester.  I'm going stir crazy!  My life revolves around physical therapy, doctors appointments, setting up and taking down fluids and TPN, doing meds, running tube feeds....and that is a full time job.  But I'm fully committed to getting into college as I miss a schoolwork and a more normal routine so much!  It will be very part-time; 1-2 classes at a time unless my memory, focus, and brain fog improves drastically.  I'm excited, and assuming everything works out I can't wait to get started!  

with Faith,

Saturday, May 5, 2012

Derby Day!

I first started casually following horse racing about a decade ago, particularly the Triple Crown!.  The first Saturday in May I fairly drove my family crazy at times, because my world stopped, and from 5-7 I wanted complete silence in our living room, and not to be disturbed!  2002 was the first time I tuned in on Derby Day, War Emblem took the roses that year.

I was hooked.  The pageantry, the gorgeous thoroughbreds at the top of their game flying along.  I'd just started riding myself the year before, and it was just another piece to becoming a more well rounded equestrian.  All those gorgeous thoroughbreds racing their heart out!  I used to get out my piano bench, throw up a blanket and rope for my girth, drag a kitchen chair around front and tie more rope on for reins, and "ride" with my feet tucked up like the jockey I wanted to be (but like gymnastics, my body type was not cut out for that!)  I talked to my imaginary trainer, and my horses nose was always in front at the wire.  Other times, when I wasn't feeling well, I'd put on my breeches and go back to bed, or flop on the couch with race and grand prix reruns, or horse movies on.  

A few horses really stole my heart over the years and I always pick my favorites based on their story - Funny Cide was the first.  He was a gelding, and geldings just DON'T win the Derby.  I still feel fond of that plucky guy!  Smarty Jones was next, undefeated going into the Derby and winning the Preakness as well in grand succession, until Birdstone overtook him in the Belmont.  Edgar Prado even apolgized in the winners circle!  I cried as I changed his stats on the paper I had hanging in my room, with Stewart Elliott in crisp white and blue silks jockeying him to one of their previous wins printed on top.  After that, I took horse racing a little less seriously.  The Triple Crown is just so elusive, and after Smarty no racehorse was quite so special to me.  Besides, I had my own special horses to love on, in real life.

But every spring I do enjoy watching the run for the roses, plus the Belmont and Preakness Stakes (only now I let mom in the room - She's actually knows a bit about racing strategies after all these years!)

This year, I chose Union Rags immediately upon hearing his owners story.  His owner, Phyllis Wyeth, was a horsewoman from the moment she was born.  They showed these amazing photos of her as a young woman, riding effortlessly over large hedge jumps on lanky steeplechasers, or around the barn smiling broadly.  Beautiful lady, then and now.  Unfortunately, forty years ago she became a quadriplegic in a car wreck, but did walk again by sheer will, despite doctors telling her it was impossible for her to be doing so.  

The bumble bee isn't built for flying, in fact physics tell us that it should not be able to at all.  But nobody told the bee that.  

It was so special to see her there, using her power chair, rooting on her horse, knowing what it took to not only just get to the track that day, but what it took for her to get to that point in her life (I can't even imagine!)  And despite not finishing the day in the winner's circle, the fact that she had a horse in the Derby, the fact that she decided to so graciously plot a new course for her life after it took such a drastic spin, is such a winning attitude that it doesn't even matter.  And that's what I love about equestrian sports, horses are so forgiving.