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

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.

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

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