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!

Milly



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

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,
Milly

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.


-M

Joys in each Day

I love how each day has so many little things in it that has the potential make us smile, if we just pay attention.  Especially once spring overtakes winter!  The way thin summer clouds clouds look when the wind pushes them along on a sunny day, or hearing the birds singing the same songs I been listening to since I was a little girl, are enough to make anybody smile!  I love the familiar comfort in that, and knowing that even when I'm having a bad day they go on singing - the world goes on.  Another familiar sound I love is the sound of the racecars, as I live close to a track.  Every weekend as soon as spring comes and until summer is over, they're out there tearing up the dirt.  It is such a comforting rhythm in my life.  I sleep better when they're running, because I've been hearing it since I was born 21 summers ago.


I love getting mail, and using my favorite tote bag, and spending time with people who make me laugh.  I think sitting around a bonfire with good friends on a starry night is the best way to spend a summer night and get that joyful bubble in your heart, and spending time with my Savior the best way to keep it there.  I love Sunday mornings fellowshipping and worshipping with some of the most amazing people I know.  And even when everything seems like its going wrong, I always know that these things are there and going to always be right.


Just amazes me how each day has so many special things in it.  I should write them down, because sometimes I'm too busy or overwhelmed to notice.  For when I start to notice, I find myself feeling so much happier!  So today, stop and thank God for something.  
Because Life is really special.


-Milly

previous post continued!

my friend Beth posted a comment that made me think of something I forgot to touch on so I thought I'd do a blog post reply back to her!

I think the thing that bugs me the most that I have to watch my inner attitude about is when people look at me and don't return my smile...they just keep a solemn look...I'm learning to let it roll off and not bother me.

I know just what you mean Beth!  One of my favorite thing is to give the starers a huge smile.  I love it when they break, and smile back.  You're such an encouragement to me!

So there is another thing you can do when people are staring at you.  The bigger, more cheerily obnoxious your smile is, the better!  Let Jesus' light shine :)  

I love kids.  They just look right past everything, and accept things for what they are.
Everywhere I go I tend to get a lot of stares, Walmart is the worst for whatever reason.  My local mall isn't too bad surprisingly, and I see quite a few others in power and manual chairs.  One of my favorite places to be is my rehab  hospital, where there are dozens of others much like myself.

But I just love how children ignore differences, or accept them after a momentary glance to take something in in order to understand it before moving on.  I will always let kids (usually ones I know) come up and feel my rims, or climb on my chair, I love it!  I think it's great for them to learn early on that it's not something to be afraid of.  Sometimes parents will literally pull their kids away from me, make a wider loop in a store to purposefully avoid getting close to me in a store.  I don't think that's doing them any good, and only makes me feel uncomfortable!  So please, don't act like somebody in a chair, or with tubes/lines is a somebody to be afraid of.  Some days, if I have the energy, I'd probably prefer that you came up and said hi to me versus staring and staring and staring!  Many however would prefer people did not, please be considerate.   When somebody is staring me down, it can often last for a really long time!  It's uncomfortable and sometimes I'll just look at them back so they realize they are doing it.   Other times, I will ignore it, and continue with what I am doing.  I really wish everyone knew that this is probably the #1 thing people with a disability hates.  It makes me want to go up to whoever is doing it and say "do you know how hard it was for me to get here today?  And how much I just want to enjoy this normal task without you staring and reminding me how I stick out like a sore thumb?"  But that would be rude on my part!  Also, please don't look at me with "that look".  you know, the "oh look at that poor girl in the wheelchair oh that's so sad!" one.  I'm doing just fine!  There's another thing I love about kids, to them I'm getting around like they are, only in a different way.  and hey check out the cool wheels!  (or crutches. *whack whack*  or braces.  "ooh velcro!  let me pull that off!"  Oh, they're so cute!)

I've been blessed with a ton of really great environments, so I don't have to encounter with those awkward moments too often.  And when I do I usually go with my ignore tactic despite how annoying I do find it, I'm comfortable with who I am and I don't feel embarrassed by that.  My high school, even when I return for functions now 1-2 years later, is still just as comfortable and open a place as it was then.  Same with my large church.  My friends are cool with whatever I show up hooked up to or have sticking out of me, and I am beyond grateful for them.  Many do not have the supports I do!  But I've been thinking about this for awhile, and how I hear so many talk about how it bugs them as well, and thought I'd do a post on it.  It made me feel better, anyway!  I think so many just aren't aware, and that's ok.  Hey the more people who don't know what all this stuff is the better!  I wish nobody had to know.

Easter

I wrote this yesterday on my tumblr.  Just going to copy and paste it here even though it's Easter Sunday.

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It’s the Saturday before God the Father lifted Christ from the Grave all hope was lost 2000+ years ago.  Just remember when all hope seems lost, that He is right there with you and is always there to lift your head when you are to tired to hold it up yourself!  I’ve been in so many dark places this year, including the Valley of the Shadow, and my own sorrows and anger at my humanity.  Struggles.  Sadness.  Fear.  But God remains and in the end, He is Risen.  HE is GOD.  Jesus Christ was at the beginning and the end (Rev 1), He is the Word and He was with God at the Creation of the Universe (John 1).

Give all your worries and anxieties to Him. You don’t HAVE to live with them!  You don’t HAVE to carry them!  I know my shoulders are NOT big enough to carry them.  I can’t walk through this life with them on my back.  I have enough to carry, both physically and emotionally, and do not want or need extra baggage.  I have a Savior to give them too.  and like He said and is recorded in all 4 of the Gospels, it is Finished.  It was nailed to the cross with Jesus, He saw all our sins and sorrows and when He died He ended the legalism, it died with Him.  Heard somebody put it that way once, about the legalism, and I love that so much.   Our sins, and burdens, died with Him.  thousands of years before we were even born He took them away!  They’re gone!  but we have to give them up.  And that’s the hard part, something I’m still learning how to do every day.

I love the song You are God Alone by Phillips, Craig & Dean.

Love, Milly