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

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

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

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