Loopy

Having a multi-system illness means varying symptoms, that often come and go without warning.  I think some are always harder than others, more frustrating or not as easy to deal with.  Everyone handles each symptoms differently.  It's so important to find ways to cope with them.  If something bothers you let it out, if there is something upsetting you, tell somebody or write it down or have a good cry.  You can't deal with an upsetting part of your illness if you're not facing it.


For myself, I hate when I get confused, aphasia (trouble speaking), and well we just call it "loopy".  An altered state of mind is frustrating for me, because I cope by thinking things through and communicating/talking things out.  This week I went through a long spell of these symptoms but I found myself able to cope in other ways, and to be honest I'm not really sure how to explain what I did I just know it worked out.  Those around me were so gracious as I stuttered and even fell silent, staring off into space. They worked to understand my needs and didn't treat me poorly.  I think that's a good 'step one' for ANYBODY: surround yourself with good seed, supportive people.  And don't let a bad seed bring you down!


As far as related thoughts medically, I've come to some conclusions over the years:
-Seek out physicians that you really like and click with.  It's okay to interview for a good  match for you!  Their priorities need to match your priorities.  If they are not listening, it's time to move on.  If you can't trust the person who is making important decisions about your health, then how can you trust their decisions?  Once you have trust in a doctor who is actively trying to improve your condition, and listening to what you are saying over their own pride, then you really do have a shot at improving your quality of life.  And there are so many amazing physicians like that out there!  It's not ALWAYS about seeing the "best in the business" for a particular problem, sometimes it's just about finding who is going to work with you.


I cope way better when I'm not stressed, and doing the aforementioned takes away unneeded worry.  Another thing I do from time to time is go visit a counselor I found through my Pastor a few years ago.  I had to see somebody before I could go to an inpatient PT/OT center as an insurance requirement, and ended up really clicking with her!  I find that talking things out to an unbiased 3rd party who can empower me through encouragement and sound ideas is invaluable.  In between, my friends, family, Heavenly Father and journal really get an earful!  Life is worth it, and just because it seems incredibly difficult doesn't mean it can't be good, amazing even.  I can try to inspire you with cheery feel-good quotes, but until you feel in your heart that you have something and Someone to live for, it won't mean anything. 


Zephaniah 3:17 

The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

Quotes

I've always really loved quotes, and one of my favorites is "Courage doesn't always roar; sometimes it is the quiet voice at the end of the day, saying, 'I will try again tomorrow'."

Last December I was waiting to hear if my insurance was going to continue to deny a very important transfer to my rehab hospital.  I was paralyzed on my left side, (my right leg was also pretty involved) unable to stand, but managed to get myself around the hospital with my right arm, reaching back and forth from the right wheel the the left, IV pole tucked between my footrests.  I can do almost everything with just my left hand!  My favorite doctor was fighting hard to get me transferred and as I anxiously waited the child life specialists (who were dear friends after multiple stays at the hopsital) and I came up with a distraction: scrap booking.  The subject, quotes.  The aforementioned one is front and center!  The back page was for autographs and quotes from friends and staff.  I can see it resting on my shelf, and it makes me smile.  Sometimes, you just need to think about something else!  It's so hard to wait, and be patient, as it is.  My doctor did win the appeals and I was moved about 2 weeks later.

Here are all the Quotes (and one verse) in my scrapbook
"Life is not measured by the number of breaths we take....but by the moments that take our breath away"
"Music is the way feelings sound"
"Count it pure joy when the world comes crashing//hold your head up and keep on dancing" -MercyMe
"I believe in Christianity as I believe the Sun as Risen, not only because I see it, but because I see everything by it"
"Life isn't about waiting for the storm to pass, its about learning to dance in the rain"
"Every night I turn my worries over to God...He's going to be up all night anyway!"
"Look at the birds of the air...they do not reap or sow...yet your Heavenly Father feeds them...are you not worth more than they?" -Matthew 6:26
"I need the essential joy of being with horses"
"There are no challenges only opportunities"
"Life holds a flavor the protected will never know" -my friend FM
"Shoot for the moon-even if you miss you'll land among the stars"
"We have no right to ask when sorrows come 'why did this happen to me' unless we ask the same question for every moment of happiness that comes our way"
"Finish each day and be done with it, you have done what you could"
"Wherever you go, go with all your heart" -Confucius
"Maybe tonight, maybe tomorrow we'll win this fight and trade in this sorrow//so we live strong"
"Nobody can make you feel inferior without your consent"-Eleanor Roosevelt
"Our greatest glory is not in never falling, but in rising every time we fall"
"Cry it out, write it down, then take a deep breath and leave it there.  Mourn it when you feel the need.  This is the first step to finding peace." -Me
"Accept life's challenges and face them, and then you will experience exhilaration"
"You never know how strong you are until your only choice is to be strong"
"You never realize that Jesus is all you need until Jesus is all you have" -Corrie Ten Boom
"A smooth sea does not make a skilled mariner"

Corrie ten Boom said that in reference to spending time in a concentration camp for hiding Jews from Nazi's, trying to send them to the very place she was imprisoned.  Now that's faith!  I think sometimes quotes have a lot more behind them, if you take the time to research the back story, though usually the application is meaningful enough!

I still go to my rehab hospital 3x a week, I've been going there off and on for over two years.  Today I had to say goodbye to the aide who has been a part of my care and improvement, mostly over the last year.  You never forget people like that!

-M

What are you living for?

What are you living for?
Different points in our lives, they really remind us whats important but over time it can be easy to lose sight of that.  To forget those moments that totally amaze and inspire us to direct ourselves, whether they were good or bad!  I really miss Chapel at my school, they always lifted me up each week.

Personally, I am living for Jesus Christ.  I make mistakes every day, but His free gift He paid for on the cross means my debt is forgiven.  I don't have to live in that worry or fear!  I can live freely.  It's really hard to be chronically ill, everyone who is would be lying if they said it never was.  But I can also honestly say that He makes it easy for me a lot of the time, because I feel like it's just something I can accept and do.  I have so much HOPE because of Him, even when I can't imagine past today.  And I often feel that way, yet I'm at peace too.  It's a weird combo of feelings!  I'm grateful to have a God who lets me be upset, or confused, without telling me that I'm a terrible person or shouldn't be doubting His will.  He's a big God, He can handle my humanity!  I am not mad at Him, this is not His fault we are just in this fallen world, because He gave us free will and man fell.

It's so important to have goals, hopes and dreams.  Some dreams can (and should) be totally unrealistic and over the top!  I have a bucket list, and on it is to ride with Beezie Madden!  I mean how cool would that be?!  Some are more attainable, like to gallop on the beach (at least I hope I can do that one day!), and go to Europe.  I also have goals in my life.  Move out of my parent's home, take online college courses, and maybe one day even live on campus at my favorite school.  As far as hopes, I pray I can one day not need so much outside of my body to keep the inside of it going.  But I can also live with that, because contrary to popular belief it IS still a life.  So many life full and happy lives, and with much more invasive equipment than I!

I've been given a body to breathe in, with a soul, and thats very precious.  Don't forget how valuable your life is, or Who made it.

Work Together!

This morning I went to my chiropractor, who as always greeted me warmly and didn't let me leave without a hug.  I told him, "I don't know what I'd do without you."  He got quiet and said that he prays every day that he could do more.  I told him that he does plenty!  Because in all honesty, if I couldn't get adjustments I would be crippled by my own spine.  When I get "all out of whack" (very medical terms here, yessir!) he's the only one that can provide me any relief, the only one that offers it!  Not my fancy orthopaedic surgeon, or some naproxen offered to me by a pain doctor.  And by the way, the former told me that scoliosis, shouldn't hurt.  His response was hilarious!  I didn't tell him, but that surgeon also gave me a look of scorn and scoffed when I said I was seeing a chiropractor to manage my back pain.  Because having severe scoliosis doesn't just mean pain, it means getting locked up, subluxes, some days being totally unable to move.  I was, at the time, much more active and involved in sports.  Volleyball was brutal to my body in particular.

I immediately thought how silly that was.  Why couldn't he see that this was helping, and since he was unable to offer me bracing and since I wasn't quite at the degree for surgery, why shouldn't he support my decision and even offer to speak with my chiropractor?  The fact that he was unable to change my twisty spine was not his fault, I didn't blame him.  I just wanted some relief and stability for my back.  Chiropractory offers that to me, and whether its 8:30 at night and I've thrown something out or a standard appointment, my chiropractor will be there even if it means opening up his office after hours.

Supplementation is the same way, there are some great ones when added to your existing treatment that can really help!  I know so little about it outside of the mito cocktail I take, but Dr M who I greatly admire has been taking and is now kindly selling Chinese herbal supplements that have made a big difference for her dysautonomia, and my dear friend KS takes an Indian one her dr prescribed which helps her crohns.  Different supplements can have inflammation reducing effects as I understand it, and so much more.  I know how much all the random supplements I've tried have helped, some didn't and I stopped them, but others have been life changing as far as symptom reduction!  CoQ10, Carnitine...

I know still others who juice, or go gluten free, and also have wonderful results!  All things I've never tried (and really can't now) but I just wanted to say how much I admire you all for your dedication.

Another thing I do is yoga.  I put on some music sometimes, and have some prayer time.  I just do some simple poses, and try not to fall on my face!  I find it to be really relaxing!  I used to do it a lot more, but we're picking it up again in OT and I want to do it more in between sessions.

Look mom! I can bend over...I can turn to the side....I can twist....
I love my chiropractor, did I mention that?

-Milly

Remembering and Sharing: Past and Present

This week is a bit of an important one, though not in ways I'd like to remember.
Its the annual feeding tube awareness week, and during last years I received my first tube and have been tube fed or TPN dependent ever since. (3-4 months TPN, the rest tube feeds gratefully.)

That was a rough hospital stay, I'd arrived the week before and had an interesting experience my second day due to the type of mitochondrial disease they felt I had (my blood showed a 40% large deletion, but low heteroplasmy of the mutation.  It turned out to be nothing but at the time it was thought to be groundbreaking!).  I wrote about it shortly after I was discharged, here are some pieces from it:

...That morning after an extensive neurologic exam, where all my abnormalities seem to be magically noticed, I’d heard the fellow whisper that I might be a good candidate for "the conference". [30 people mostly in a larger room, some video conferencing in]  Soon I was asked if I would like to come to a meeting with many doctors to have my case presented and discussed to see what other ideas the forum had.  I asked a few questions, felt a bit hesitant inside, but intrigued so I agreed.  I later said to my mom, “I can’t complain about lack of awareness and understanding if I’m not willing to educate.”  Not that I meant to teach them about mitochondrial disease or POTS as far as the books go, I mean educate as far as invisible disease and odd cases that don’t make sense but in the end have a real cause... ...After the fellow gave a information packed introduction on my history, my medications, and my diagnoses I was asked to come forward and answer questions, share my story, and explain my symptoms.  A few moments in somebody spoke up in the back, they couldn’t hear me and I was wheeled over to the head of the table where a triangular mike sat. I began, doing my best to answer as directly as I could...I was asked about in great detail my strokelike episodes and my POTS episodes: how they started, how long they lasted, what they felt like, what triggered them, how my migraines tied in, and what my episode this time was like versus other episodes.  I showed them what I could do with my right side versus my left.  It was weird to do it for this strange man I’d just met in front of dozens of people, with my two favorite doctors in the audience! ...The minutes kept ticking by, I felt quiet inside, but definitely weakening.  I struggled to keep my head all the way up and eyes wide open, my left side slumped.  I took a few deep breathes and straightened best I could in time to see  my mito neurologist whisper to my main attending, “She’s getting tired.”  [She always knew, even if she wasn't looking directly at me, if I was beginning to crash.]  Nobody else seemed to notice...they talked on and continued their examinations.

It was an interesting experience, and it made me feel very strange.  My attending came to see me later, and we agreed "fishbowl" was the best way to describe it.  She also made the hard decision on the feeding tube, coming to see me every day of those three weeks (and calling the day she came and missed me!) even though she only was in house for the first one.  That's an awesome, dedicated doctor.

Today was a good day.
If you were a fly on my wall you'd not understand why I said that perhaps.  I'm obviously not feeling well today and in a bit of a battle with this body of mine.  But good days come in all kinds of bottles, you have to read the message before you judge it.


First, I went to church.  I haven't been in a month!  I am usually about 3 feet inside the door before I see somebody I know (we have about 1500 or so in our congregation, spread over 2 services) ready to give me a hug.  Today it was my friend and fellow horse lover!  She and her husband are just awesome, and if you ever want a caterer she is the finest.  Not long after, our senior pastor and a man I am so honored and grateful to have in my life comes at me: arms wide open with the biggest, most surprised smile that just made my day.  I can always count on him to be there for me, whether I'm in our local hospital or at home and need prayer.  The hospital staff can never believe he's in ministry-yup thats him!  He actually said today that he likes it that way, likes that he can just be who he is.  I admire that so much.

Church itself was wonderful, I always particularly love worship time.  As we were singing "Running to Your Arms" I noticed that somebody was standing.  She uses a cane to help her walk, and always looks to be in pain.  My heart lifted seeing her standing tall as everyone sat, praising Jesus so openly and deeply...
Heaven is going to be amazing - I prayed that everyone I know might know His love and gift!

I rested for awhile once we got home, and since I have wonderful understanding friends one of my closest friends waited til I had lied down for awhile before coming over, not complaining even though we'd had a date set up a few days earlier.  We had a lovely time sitting around laughing and reminiscing, and then playing a board and Wii games.  I'm so glad she's still around, we grew up together and spent more hours running around like little indians than I can count.

Now, since I've been lying around all evening, I'm thinking its time to go torture myself with meds in this feeding tube that I AM blessed to have until a skype date with my DTP and tubie friend Kim, who is quite the young woman!

Thank you for reading and sharing in my experiences, it is healing to share them.

God bless,
Milly

Thank You and Thoughts

To you, my friends:

I want to thank you all for the encouragement you have offered me, the smiles you have sent to me, and the love you have shown me.  And I so appreciate the messages you've been leaving on here and facebook!

like Dr Margaret says, "together we are strong."  We are meant to build each other up, and support one another.  I cannot imagine going through this without friends and family, my medical team, my church, and my school!  Each person in my life, in each of our lives, is a brick laid by God to keep us strong.  A life without people in it, especially ones as special as the ones I've been blessed with, is a life without vibrance. I just feel, for a lack of a better word, droopy! thinking about it.  I cannot imagine doing this alone, and don't believe we were meant to.

This morning, mom and I drove into our chiropractor's office.  We just love him!  the office staff always greets us warmly, and Dr Mike just wasn't letting me leave without a hug this morning.  He started off the appt like he often does, sitting down with me to talk and see how I am doing.  He greets my mom with fervor as well, eager to see us and help in all ways he can.

When I roll into my rehabilitation hospital, we're immediately greeted with waves and smiles and hugs from everybody: from the main desk staff to the custodians.  Family and friends are often synonymous words, and they're not always blood.  And my friends are so special to me, so dear and kind and caring.  I hope I can be half as good of one in return, because you all are truly remarkable.

My school friends used to bend over backwards to make sure I could get around my painfully non accessible school, carrying my chair up and down steps (somebody making sure I didn't fall trying to follow it!), or wheeling me outside and down the driveway.  The bathrooms were all on the upper level, so if my chair was downstairs I had to crawl upstairs to get to them, and anybody discovering me in that odd predicament only offered a hand, not cruel words.

I could go on and on!

but I really should go use the energy I've been given today to get some more things done.

I hope you all are having a blessed, beautiful, sunny day.
Milly

Laughter is the Best Medicine

I just spent the past 1hr 21min with a fellow POTSy friend doing one of my favorite activities: laughing!  
Its exercise, it has to be because it definitely is tiring!
It's medicine, surely, because it makes me feel better in its own way.


We also shared, teased, and even grumped a time or two.


Today was a tiring exhausting day, but a very good day.
I feel the need to sleep a lot, but something always gives me the courage to keep going.
Knowing Im going to see a smile on my physical therapists face when she came down the hall and saw I was sitting in the waiting room, that I'd made it in that day.


Every time a new challenge pops up - med time, needing to set up IV fluids, or refill my feeds - I know I can because these things keep me strong and well as I can.  Each time I need to climb the stairs or overcome some physical challenge I do my best to put one foot in front of the other (usually just not thinking about it), I push because I believe there are purposes in every day, in every life.  God gives me strength to carry on.  I consider it all Joy - James 1:2


--Fighting On
Milly