Night.

Nighttime.  It's usually my favorite time; from the moment I get up I'm aching for it to be bedtime again as the thought of facing the coming seven hours seems almost impossible.  But when insomnia or intense symptoms are overpowering me, it too feels torturous.  Everything aches.  I'm too sore to lie on my side because my shoulder keeps subluxing, but my back hurts so much when I sit up too long.  Lying on my back is often uncomfortable on other joints, and my lines and tubes tangle easily and feel cold against me instead of hanging off the side.  I hate the feel of them, even after all this time.

Insomnia is common in all my disorders, even my suspected diagnosis of mitochondrial disease.  Mito means my body cannot turn food into energy.  Ironic!  I'm unable to sleep and feel so unbelievable exhausted I could burst into tears.  Instead of doing that as it doesn't do any good, believe it or not, I try to distract myself.  There's always a friend also battling the night as well, or a good Gene Kelly musical to make me smile.

It's harder to ignore all the little things at night.  A sore nose from a rubbing bipap mask, curving spine letting off sharp pains with ribs and neck following suit.  Eyes even ache at this time of day.  It's weariness and pain and fatigue so strong that I feel it so keenly as though every cell has many pounds of sand weighing them down.  Breathing and thinking and being and thinking takes effort.  Sometimes, it gets to the point where I just pass out in and out and breathing gets so shallow and slow that it feels as though I might stop. Chronic respiratory failure is a scary and hard disease, and despite my AVAPS aiding my weak breaths 24/7 I struggle constantly

Something, Somebody, much more powerful is helping me lift my tired hands and inflate my weary lungs more than any machine.  Stronger than IV fluids or TPN giving me sustanance.  I know God is my ultimate provider and sustainer of life.  I know He is the One who decides my going out and coming in, my every day here on earth.  I'm ready and waiting for each decision He has for my life, because I trust Him implicitly.

I could never explain fully what this feels like, though as I said in my last post I really want to try.  More important to me though, is that you meet my Savior.

Love,
Milly

Sharing

Hello my friends.

For all these months, the years of having a constant urge to write had left me.  I haven't really been journaling or doing any logging like I had for so long.  Lately, it's been creeping back ever so slowly. I don't have the vivacious need to write, but I do feel a tug.  I know that not doing so will leave large holes in my story that I have for so long painstakingly archived, if not well at least in almost its entirety.

While I know I have no energy to do continue that, I at least would like to tell some daily stories that might be boring but will at least share the struggles and triumph of living with this disease.  The simplest of chores gave me the inclination.  I was trying to get myself put back together after a shower.  As always, it took an unreasonably long time, at least twenty minutes, to do what would take you 2 minutes or less.  My two IV fluid lines got caught up in my bipap machine at least 4 times, tangled up in me, tangled up in everything else it could find.  I kept tripping all over my bags and the vent till I wash shaking.  I have to get dressed and hooked up to things in the proper order or I'll be all tangled yet again.  By the time I'd finished I was so frustrated I was reminded why I only go through the process of a halfhearted shower once a week, something most do once on average without even thinking about the ease of it.  It's exhausting and I have to literally rest up to get it done.  Other chores take similar buildup in stamina in order to achieve, such as dressing changes or a simple trek down my stairs to sit with my family for an hour.  At the end of that time I'm exhausted and can't wait to go lie down in the silence and solitude of my room.

I try to keep my blog posts light and positive, and I always want it to be known how truly blessed I have been in my life.  But I feel the urge to share the reality of what not only I but all who share my diagnosis's go through, for when we share I'm constantly amazed by the unity in our stories and feelings. I want to share for them as well.

Because of my limited energy, please forgive any mistsakes.

Blessings,
Milly

"they go from strength to strength"

Well hello!

My surgery went off so smoothly that my surgeon could scarce believe it.  He still talks about it every time I see him!  We both give God the glory as each of my doctors were expecting at least a small amount of complications.  I'm grateful to the anesthesiology team for their skill in avoiding certain drugs (muscle relaxants etc) that would have weakened my respiratory system, but are most always used in general anesthesia when putting somebody on a ventilator.  My surgeon did a wonderful job as always and encountered no problems.  Also, GI was able to come in after and give me a G-tube which has proven to be invaluable in symptom control, as well as releasing air so I can use my biPAP.

My Bible's bookmark has seemingly been permanently set between the pages of Psalms, the 85th.  The last six months have been particularly challenging, but as always reading passages brings me comfort knowing the truth they contain.  I love John, James, and Psalms in particular.  (John 15 has been my 'read' this week on repeat!)  

I just wanted to share this with you: One of my favorite doctors made a note about going from "strength to strength" as an encouragement to me.  I found it in my favorite Psalm 85, which I found to be very ironic.

Vs 5-7: "Blessed is the man whose strength is in You whose heart is set on pilgrimage as they pass through the Valley of Baca.  They make it a spring; the rain also covers it with pools.  They go from strength to strength.  Each one appears before God in Zion."

I think it's such a beautiful thought.  Even when nothing is going right, and it feels like there is nothing to keep me going-nothing to distract me or give me any purpose-I can rest assured that His strength is enough to carry me.  Often though, I do have little things throughout the day that make me smile, little "strengths" as I now think of them that keep me going.  Whether it's a bit of time studying, a message from a friend, or a bit of Scripture.

I hope everyone has a beautiful week, and a blessed day.
Love, Milly

Psalms and Stars

I am so grateful for today!
Some days I am less inclined towards gratefulness, but as Psalm 118:24 states, "this is the day the Lord has made; let us rejoice and be glad in it."  I can't help but rejoice on the good days and I really do feel how good He is every day; but rejoicing doesn't come easy when things are frustrating, painful, and difficult.

But today was finally a better day.  And while last several weeks have been incredibly challenging physically, this describes everything to a 'T': Psalm 42:8 "By day the Lord directs His love, at night His song is with me, a prayer to the God of my life."  He continually upholds me.

I've really been enjoying messages from Louie Giglio.  "How Great is Our God" was exactly what I needed to hear this weekend!  If you get the chance, check it out.  Did you know that the biggest star in the known universe, could fit 378 quadrillion Earths?  Psalm 33:6 says, "by the Word of the Lord the Heavens were made; their starry hosts by the breath of His mouth."  Yeah, my mind was pretty blown too!  I loved all the beautiful photos of space that he posted along with the message, absolutely stunning.  The next day, I watched the one called "Indescribable" and was just as amazed and encouraged.

I'm so amazed that such a massive, star-breathing God (who as Psalm 147 says knows each one by name) would comfort me and bring me peace so constantly!

This is just cool, a beautiful expression of God's grace in all things, as Louie Giglio simply pointed out.
It's at the very center, in the black hole of a whirlpool Galaxy called "The Darling".  It's called the 'X structure'

Thanks Hubble!  If you want to see more of God's creation, browse around the site!  Absolutely beautiful.


-Milly



I know I'm not a terribly frequent blogger, but I am having surgery next Tuesday and may be absent for longer than usual.

One Word 365

Trust.

It was blatantly obvious, I didn't even pick it.  I just knew that's what it was.

I better back up, for those of you who don't know what One Word 365 is.
You pick a word that describes what you want to learn, work on, or embrace that year.  (At least that's how I envision it.)  Last year, I chose joy.

So much is uncertain for me right now.  I learned around Thanksgiving last year that my gallbladder needs to come out.  The rule for me is emergency surgeries only, since I tend to have a poor recover and backslide afterwards due to the drugs and narcotics.  There is some equipment I need to help with my breathing, and I am having a lot of new symptoms and developments.

So when this word challenge came around again in the New Year, I knew it was going to be a year of trust.  In past years, I had to learn to trust.  This year, I need exercise it without holding back because I am not strong enough to do this on my own.

Proverbs 3:5-6
Trust in the Lord with all your heart, and lean not on your own understanding.  In all your ways acknowledge Him, and He will make your paths straight.

This is the most imporant part of my One Word 365!  This verse is so special to me.  Psalm 139, as I'm sure I've quoted before, states that He knit me together and ordained my days before I was even born.  He isn't surprised by what is going on in my life!  It is a fallen world, and not how He'd like it to be.  He redeemed me, and has a place for all who receive His gift in eternity, but for now I'll do everything He calls me to do where I'm at.

I also have to trust those whom God has placed in my life.  I am finding it easy lately to trust that my physicians are making the best decisions for me, and accepting those decisions with peace.  There have been some weighty and difficult ones to make recently!  And as I go into surgery, there will be many decisions that my surgeon and anesthesiology team will have to make on the spot.  I need to have absolute trust in them that they are going to make all the right calls.  I've come to the conclusion long ago that it is out of my hands!  God is in control, not me.  I frequently forget this and try to micromanage everything, but He is always quick to gently remind me that He's "got it covered, relax".

When we let go, and trust, we are free to enjoy life.
Milly

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! :)

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