Tuesday, December 25, 2012

The Best Christmas Ever.


Merry Christmas!

This time of year now brings back some unique and special memories for me.  My family and I remember Christmas 2010 as the best one we ever had.  You might imagine that we were all gathered together, eating lots of good food at a beautiful table before opening a pile of presents under our tree.  In actuality, we were crammed in my half of a hospital room in a pediatric rehabilitation hospital, the other half shared by one of the dearest friends I have ever been given in this life.  I'd already been in the hospital several weeks, and was now struggling to relearn how to stand, and then walk, after months of frequent severe stroke-like/hemiplegic episodes.

The day started with a strange "swooshing" sound.  I struggled to shake the black spots away, half dysautonomia and half sleep, as I sat up to see what was going on.  To my surprise, our nurse was dragging in huge boxes wrapped in bright paper, filled to the brim with wrapped presents.  I could hear excitement floating in through our open door, along with the light of the morning.

I said of mornings at that hospital:
"Days started the same, in a warm comforting pattern.  The voices of your night nurses faded if you were unfortunate enough to be up at seven......You smiled at your day nurse, all were your favorites, and she greeted you warmly and affectionately like you were her own daughter."
S and I eventually sat at the boxes after going up and down the hall to see our friends.  She plopped down on the floor while I looked on from my worn wheelchair.  We hardly knew where to start.  "You do one, and I'll do one!"  I remember finally saying.  There were at least thirty packages in each of our boxes, extravagant in my mind.  It wasn't the gifts that struck us, it was the fact that Child Life had figured out the interests and needs of each child in the hospital, and wrapped all of those gifts for each of us.  There were only a few of them, and they'd stayed up late Christmas Eve to finish, we'd seen them.  It was very touching.  We soon were back out in the hallway with all the other families, who were joined with our own.  It's a difficult thing, what we were all doing, but doing it together made it easier and I cannot tell you the number of amazing people I have met.

PS we got permission to take pictures for Christmas! 
My prayer quilt, each knot is a prayer. Made me cry!


I wheeled alongside another good friend, T.  I helped him tear open his bright packages, almost all football related! while we talked with the others.  I tear up just thinking of him, he became very much like a brother and I miss him very much.  Some people have such a strong spirit inside of them that they give you the fire you need to push on in times when you think you can't move another inch.

Soon my family arrived and we had a wonderful day together, just being.  We opened our Christmas presents and mom brought my stocking for me (I love tradition).  We played Scrabble and had a delicious meal in the cafeteria (they make amazing food, and go all out for the holidays.)  Feeling at home there, with such amazing people around us, was so special.  And we just spent the entire day together talking, laughing, and playing games.  We were immersed in each others company and the joy of the season, remembering how blessed we are and what a gift life is, eternal life from God and Jesus' birth.  That is what made it the best Christmas we've ever had.



My sister visited me often, as she lived nearby at the time.  New Years Eve she joined in the party with the families.  I was collapsed in bed early as usual.  So two other patients, my sisters, climbed into my bed with me for the ball drop and made enough noise for the three of us!!  What lovely memories.

Thanks to generosity and more stories that cause waterworks, I was able to stay past my insurance's deadline (my progress was to slow for them).  I did leave that hospital able to walk with a walker a functional distance due to my physical therapist's determination.  He came up with the idea to use isometric maneuvers called "hooking", which is what pilots experiencing G-forces exercise to stay conscious while flying.  It works by squeezing large muscles groups to prevent blood pooling.  It worked wonders for my dysautonomia, as did my doctors willingness to keep IV fluids going with peripheral IVs as I wouldn't get my first port for a few more months.  That wasn't their usual protocol.  My PT would also encourage me and tell me not to give up, to stay on my feet!  I would think of T, S, and all the others and I'd find it in me to keep going.  Praise God for the kindness of others, I'm forever grateful.

I can't believe it's been 2 years since I've seen so many special faces.  I still go to the same place for outpatient PT, and I have seen some people more recently.  One long distance family I just got to hug a few months ago upon their return!  Others, I stay in touch with, thanks to the amazing technology we have today!

I've treasured the past two Christmases even more because I HAVE been home.  My mom makes each year so special.  Although I do remember spending a few very sick, one Christmas Eve we spent trying to get to the ER in a blizzard, and I had a scheduled test the next day.  I was a bit grumpy that year! ;-) But Christmas has always been wonderful, even when I'm not well.  This year was no exception, even though I "crashed" for part of our time, it was an amazing Christmas.  Every year I say it was my favorite, and every year it's true!

finishing presents Christmas morning, our tradition
is to do them Christmas Eve, but I was going with my body's flow!

My sister, brother in law, and I Christmas Eve! :)


Sunday, November 18, 2012

Thanksgiving in Struggles


What a crazy time right now!  As a wise and lovely mito friend worded it, it's hard to know when the train is going to stop, or how fast it's going to go.  You wish you can hit pause.

I returned to Milwaukee for clinics earlier in the month.  Right now I'm dealing with the harsh realities of progression; which is including worsening in my respiratory system, crashes, worsening of symptoms, and little energy.  We're trying to get equipment, including a biPAP covered at the moment.  Last week when 2 EMTs entered my home to take me to the hospital because I'd collapsed on the floor hours before, I coulI d hear one saying she remembered this or that.  She was one of the two who took me in the day I became dangerously septic.  I was able to get home later that night, using my wheelchair, as I needed my TPN on time (ish ;D) more than round the clock banana bags (dextrose/magnesium/multivitamin IV fluids) and nursing care.  I was doing better the next morning, but pushing it too hard too fast caught up to me the following day, and I began having a lot of weakness, ataxia, and complex migraines as we were headed into my PCPs. We love her, and her understanding and kindness made the situation easier as I tried to stutter out some answers for her.  The rest of the day was a comedy of errors, but aside from being quite wiped out the days to follow were rather uneventful health-wise.
Beth and I at the play

I was able to go to my first broadway show, something on my bucket list, this week!  That's two things crossed off in one month thanks to the kindness of friends and strangers.  My dear friend who took me to the play said I'm not allowed to check things off too fast, or need to add more items.  I have SO many things I want to do, it's going to take me ages!  We had an awesome time, and it was an incredible production.  I'm so thankful, such wonderful memories.  The other item I was able to cross off was fly a plane.  It was only for a few moments on my own, but it's something I've always dreamed of doing, and I got the opportunity when flying home with one of the Angel Flight pilots.  We have met so many amazing people, I can't imagine life without them.  But if I wasn't sick, life WOULD be without them.  And truly, that makes my heart drop.

copilot! I even got to pull up w/ him during takeoff, which felt so cool
I paid for the trip to Wisconsin and going to the play though, it takes so much energy just to speak, so I am pretty quiet most of the time.  It's hard to explain how it feels to be that tired, and I ask that those around me will have patience when I am silent.  I have so many words that I would like to say, but it is too difficult.  I have so many places I would like my feet to take me, but the ache with the strain of just standing.  So I will pick my battles, say the words that I can and walk in the area that I am able and be grateful that I can still do that, because as I do I often think about the many times when even that was impossible.  Especially as Christmas approaches, and the multiple hemiplegic episodes took away so much.  Although we all agree, that Christmas we spent in the hospital was the best one we ever had!

Happy Thanksgiving!
With love,
Milly

Saturday, September 8, 2012

English

Greetings!  We're already a week into September, and I'm almost a month into my english class.  I find the format of online courses to be extremely conducive to my life.  I was not sure if I was going to be able to learn this way but I was surprised at how well I fell into a good program.  I even had a short hospital stay this past week and it didn't keep me from getting assignments in on time and continuing to work towards next deadlines.

My opthamologist is my hero; I was unable to sit and read prior to being put back into bifocals.  Now I can go through pages of text and feel like I'm actually absorbing material.  Now brain fog and complex migraines are my biggest enemies!  I've found the best way for me to get things done are to work ahead, even when I don't feel my best.  I can't wait for good conditions because they aren't going to come 95% of the time, instead I need to just try whenever I can and see what I can accomplish.  Chances are I'm going to surprise myself!  Next, I need to keep my instructor up to date on what is going on with me along with the disability counselor.  That way if something comes up unexpectedly she isn't caught of guard thinking I was doing wonderfully.  I also have a letter from my specialist saying I will probably need more time, and she has kindly told me this is fine.

I'm so enjoying the change of pace and having something to focus on.  I think I have said that multiple times already, but it is so incredible true.  I am glad I am only doing one class though, I don't want to feel frustrated or overwhelmed - just challenged.  The last thing I need is any added stress!  I really encourage anybody who is debating about starting classes to go for it, you never know if you won't have the opportunity to later.  Trying something new has very few downsides.


Friday, August 31, 2012

Summer 2012

Greetings friends.
I wish I could say that all is quiet on the front lines ;), but seems like it is one thing after the other.  I wasn't two words into this post before a pump started beeping at me!

I haven't had the heart to write as much as I was in past months, usually I use my journal a lot more.  A lot of my time goes to resting in between phone calls, my daily cares, and emailing my doctors and nurses.  I'm so grateful to my team!  Unfortunately no matter how much I rest, I don't feel like I'm making improvements, but am actually regressing right now.  I often return to my previous baseline and I am keeping the faith that this will be the case.  But it doesn't change the fact that it has been a challenging month, and it's natural for me to wonder.


On the positive side, I have started my first college class.  I have been feeling determined to test the waters since graduating high school and am delighted that I'm finally able to.  There was never going to be a particularly good time to start; I'm always going to have good and bad days, weeks, and months.  It did seem to be the right time though and I know God will walk me through it like He does everything else, from procedures to needle changes to tests.  

1 Corinthians 10:31 (NKJV) "Therefore, whether you eat or drink, or whatever you do, do all to the glory of God."


I had a bit of an adventure earlier in the month that was such a blessing to me, albeit probably part of the reason why I'm so wiped out now.  I was asked to speak at a church a dear friend of mine pastors - he is like a father to me.  So a former teacher and friend of mine drove us out so we could spend the weekend with him and his family, something we've wanted to do for ages.  It was an incredible blessing to see them and meet their church family, they are just so special!  Giving my testimony was a great experience and I'm so grateful.


I also milked a cow and bottled fed a calf.  Right up my alley.

Isn't that little guy cute?  I have loved getting to go out and do some fun things lately.  I'm hoping to get to go back to visit Francine soon, it's good to have things to look forward to and push myself even if in the long run it does contribute to me feeling worse.  I'm so glad that my specialists don't stop me from doing things I want to do despite that risk.

Well I need to go and prep my TPN!  Yum!
Goodnight,
M


Monday, July 30, 2012

Things We Don't Understand

I started this post awhile ago and never finished it, thought I would since it's something many spoonies go through and is an issue that has greatly impacted my life and either helped or hindered my care throughout the years.

I had my follow up with my new pulmonologist two or three weeks ago.  My pulmonary function tests (PFTs) show that my respiratory system has weakened.  We're assuming its from a progressive neuromuscular disease that my specialists have long believed is a mitochondrial disease based on many multi-system symptoms.  My blood gas gives more evidence in that direction, as I'm having metabolic acidosis.

I need a firm diagnosis to get a nocturnal noninvasive ventilator (NIV) so that my lungs can receive help at night, and I can breathe easier during the day.  My geneticist believes that to find MY diagnosis I need a muscle biopsy done, where they don't freeze the sample and blast it with energy to see how my mitochondria function, along with many other specialized testing that only one or so other labs/hospitals in the country do.  However my insurances have put me in a catch 22 as they either don't cover the billing codes for the specific muscle biopsy testing I need, or say its not medically necessary.  Again, without the diagnosis they won't approve the NIV/BiPAP, something my pulmonologist feels would improve my quality of life and support my weak lungs and diaphragm.  He stated that if I had a concrete diagnosis of mito (right now we're treating me on a clinical basis, with improvement), he could put in for a NIV without any more issues or testing, solely based on my PFTs.  Thankfully, I'm not in respiratory failure (though that would also get me a bipap, but is obviously not a diagnosis I would ever want!) and can go without the nighttime vent for right now, and if I get worse we'll repeat the blood gas, see where we are, possibly prove I need it.

But it is frustrating that I have to get worse before I can get what I need, as this is not the first time I have been in this position.  Insurers have a lot of authority to make really massive decisions, when they have not even laid eyes on me, spoken with me, or won't speak with my physicians because it isn't policy.  The doctor's who know me best, every detail about my care and conditions.

Thankfully, I know Who is in control and it isn't me or the insurance companies!
Colossians 3:15 And let the peace of God rule in your hearts, to which you were called in one body; and be thankful.
We are praying that a test called the nuclear mitome test through transgenomic will be covered (I just spoke with a very kind woman today from billing) and perhaps even find a diagnosis.  Nuclear Mitome Test explained

So while I don't understand, I'm just going to wait and see, and know God is in control.  I can't change anything about the world by worrying!  But that doesn't mean that I'm not allowed to feel frustrated about it at times!  And that's okay.
Luke 12:25 Who of you by worrying can add a single hour to his life?


-Milly










Tuesday, June 19, 2012

Freedom

It's easy to feel trapped and chained down with illness, disability, or whatever your earthly trouble may be.  However God really impressed on my heart the other day that while I may be very limited in my physical freedom nothing can take away the liberty that is in my mind, or especially my soul.  After all isn't the human heart one of the deepest wells in the world?  I can't drive a car, or live on my own, or run a marathon.  But I can do many other things using the brain He gave me, even if it's just dreaming when I'm too sick to do anything but lie still.

So never let anything keep you from feeling free, because there is more to independence than the physical.

Never be afraid to trust an unknown future to a known God.
-Corrie Ten Boom




Sunday, June 10, 2012

Blessed!

I feel so incredibly, inexplicable, completely blessed.  Even on days like today, when I've had several hard ones in a row, I just can't forget how good God is because of how much He's given me in the past few weeks.

Be ready for as more photos than text ;-D

I had my clinics in Milwaukee June 5th, and to get there we were granted an Angel Flight.  Meeting the pilot and his wife was so incredible, and saying goodbye was emotional!  He also took the time to bring us home two days later, despite the fact that he is running a huge company.

Once we arrived at the airport Monday morning, it was a whirlwind of happy chattering that I cannot remember, and sights that I won’t forget.  A perfect blue sky, the warm sun glancing off the white wings of his perfectly clean plane.  The iridescent paint on the black engines, the tight weave of the carpeted steps leading into the plane, the feel of the leather on the hand rails.  The smiles on everyones' faces. 






We were also so fortunate as to get a room at the Ronald McDonald House of Eastern Wisconsin, this RMH is really beautiful, large, and always full!  But God definitely was ordaining every step.  The volunteers were so helpful, and supplied everything they could for me as well as showering us with gifts (as they do every guest that comes).  We spent the Monday afternoon sightseeing East Milwaukee, and around Lake Michigan.


Lake Michigan.  We'd just flown over it!
East Milwaukee



I was pretty sick that night after such a big day, not to mention past few weeks, but the next day was feeling okay and was so happy to get to spend time before and after my appointment with a friend whom I've known for years but never had the privilege of meeting!  She too has POTS.  It was really difficult to say goodbye, we talked for hours Tuesday night on a host of topics and the time slipped away from us entirely too quickly.  

Secret Garden, RMH

My clinics were very helpful and special.  I'm very happy with the plan they came up for me, and I feel that my quality of life is such a priority.  The ideas that they come up with are things I either hadn't thought of, or hadn't heard of in years (and had not been picked up by other physicians because, I suppose, they are unorthodox).  We also prayed together which was so touching, and just what I needed.


And now, here I am at home!  If I hadn't had such a massive 2 preceding weeks, it would have been as minimally taxing a trip halfway across the country as it could possibly of been on me.  Absolutely mind-blowing that we just hopped on a flight that was so selflessly offered to us, and 2 hours later we were with the doctor's I needed most in the country.  Which is well over half a day by car.  See what did I tell you?  Blessed!  Next trip to Milwaukee is to be in about four months from now, and as soon as my doctor's nurse (who is really wonderful), has dates for me \we will get set up with one and let Angel Flight know and hopefully they will be able to get us a second flight.  Receiving just the one was such a help, as flying commercial is not only expensive but it's difficult to go through security with everything, and then get it all packed on the plane and ensure it actually arrives with me.  Plus it'd be really terrible if my chair was damaged, especially to the point of no longer be able to use it.  Having to borrow a heavy hospital one immediately takes away my independence.  There's just so many things I could say about this organization that helped make me feel as though we could do this, that the doctor's I really need access to are right there, in essence! By the way, we flew directly over Toledo, OH where my well loved first dysautonomia specialist Blair Grubb practices.  We also went right by Cleveland and we could see University Circle-another place where I've received much help and will continue to for at least one more important multi-purpose surgery.

Have a wonderful Sunday everyone, and a safe week.
Milly

Thursday, May 31, 2012

Vacation

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!
Milly

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!
Milly



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,
Milly

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.


-M

Monday, April 30, 2012

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

Thursday, April 19, 2012

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.

Sunday, April 8, 2012

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

Friday, April 6, 2012

Esotropia can be cool :)


five months old, showing esotropia
Today I'm off to see my opthamologist.  I've been going to the same practice since I was ten months old.  The official name for my problem is esotropia, my right eye crosses.  We now know it's from my joint hypermobility syndrome.  The 2nd doctor I saw was my favorite and I was with him the longest, about 18 years.  Dr. D and I were such buddies!  I'd grin at him through my thick lenses that he carefully fitted to me every six months, spinning back and forth on HIS stool and say something like, "so, what seems to be the problem?" just to hear his hearty laugh and whatever witty response he came up with. 
Doubt that lasted long! just shy of 1 year

  He worked hard to fix me, to avoid surgery, to improve my vision and the pain I had in my eyes as they fought each other.  He ordered patches, I wore them biting my lip against claustrophobia and embarrassment as everyone stared in school.  I tried to convince him each appointment to let me be done, mom remembers him gently telling me "almost..almost.."   Iodine drops had worked to correct my eye crossing since before my first birthday-after all what baby is going to keep a pair of glasses alone!  (though the first doc we saw told my mom she didn't have a handle on me and was in so many words doing a bad job because I wouldn't leave them alone.  We switched!)  I needed drops again several times as a 6 or 7 y/o, mom did them and again I bit my lip again against the burning.  All they had back then were plastic frames, all the adults had different styles and colors to choose from.  I remember complaining I couldn't choose a different color! 


I grew older, and didn't think much about it all it's just been apart of my life, and its not like its life altering like everything else that I have going on.  The patching and drops stopped.  I did think the eye exams in school were really annoying.  I squinted and stared and did my best and got concerned looks and a paper with a stern "give this to your mother and go see your doctor."  at first I thought the really high numbers meant I was doing GREAT! ! maybe my eyesight is really good, won't Dr D be proud!  As the years passed I just chuckled and stuffed it in my bag and waved it at mom when I got home, "look, I failed another one"  "Imagine that!" she'd reply.  I just kept squinting, moved closer to the board, used bifocals.  I rubbed my eyes a lot just to see if that'd help!  They hurt me a lot, but I didn't notice until it went away as things improved as I reaached my pre-teens.


My cousin needed surgeries for the same problem.  I look at photos of us as babies and we are identical!  Both beaming at the camera with one blue eye going the wrong way.  We look like twins.  Speaking of John, I'm so proud of him!  He is serving our country overseas.  I love and miss him so much.


By the time I was 11 or 12, I had almost perfect vision and that lasted for quite awhile.  The glass in my now blue frames was thin, and I could see so clearly!  I have relapsed a bit a few times since, including right now, and my eye crosses anytime I don't have my glasses on to some degree.  Not a big deal, you get used to words jumping away from you, like a rubber ball on a slipper surface.  I'm a "alternator" meaning I switch my eyes back and forth to make up for the crossing when I'm reading.  It's annoying and means my eyes don't work together properly, but better than sitting there with it crossed! (by the way, I'm back now!  I learned that in his words my eyes are "wanting a weaker lense" and also needing bifocals again as well as possibly a prism.  Going to try readers first though, but he doubts that will work.  So far I agree with that!)


I was beyond upset when Dr D left, fortunately Dr P is also very nice, kind, and knowledgeable.  I'm going to take him an old photo or two, since he didn't know me as a baby/toddler. I think of Dr D often,  and I always glance over at his old stool can hear my buddy laughing..