Honest Moment

Can I be honest?  I do not think in sunshine and roses and rainbows all day long.

I still have nightmares about being in the hospital.  The care was wonderful (for the most part), it wasn’t that.  I can recall, in too vivid detail, every moment of my signal tap.  Every moment in the hours that followed.  The pain that wouldn’t stop, and doctors could do nothing about.  The devastation of lack of conclusive results from that test.  The tears from fear over an MRI, the panic attacks in the machine, being told that a second MRI will be needed.

If I’m being honest, I still have nightmares and wake up in tears.

And that’s ok.

It’s ok to be honest, to admit to your human-ness…to be broken.  

To let Him be your strength.  To let God carry you.  To say, “please take this from me”

But not my will…let Yours be done.

The Future Freaks Me Out

That was one of my favorite songs ten years ago, and the title still holds true.

I’m going to be honest…I genuinely strive each day to choose joy, and remember God’s goodness and how truly blessed I am.  But some days I fall short of that, and fear wins.

There is so little research on CIDP, and for someone like me who really needs knowledge to keep from panicking, well…it’s rough.  The little bit that doctors do know about this disease doesn’t provide much comfort…they know just enough to scare me.  CIDP is rare.  CIDP during pregnancy is almost unheard of.  I have been so fortunate to have “met” a few women online who have gone through this journey, and their willingness to share has been invaluable.  

One of the few things doctors know about CIDP in pregnancy is that relapse is common in the third trimester, or in the weeks following delivery.  Unfortunately, there doesn’t seem to be a treatment plan in place to help prevent this, so I’m left waiting for the other shoe to drop.  I spend my days choosing joy and living in the moment because that is all I have, and I’m so incredibly thankful for these days.  While I am not healthy or normal by general standards, I am much better than I was in the middle of my first flare up.  I like to think of this time as being in a remission of sorts, and I try to spend each day thankful for the ability to move, walk, and hold my son.

But in the back of my mind, I am waiting.  Waiting for the morning I wake up and can’t get out of bed.  

I have been very emotional this pregnancy.  I mean, crying-over-not-having-the-right-snacks-in-the-house, and sobbing hysterics over my 17 month old one day growing up and moving out kind of emotional.  The phrase “you are so pregnant right now” is on repeat in my husband’s vocabulary, and we both laugh at how many feelings I have over everything.  Part of this is, of course, the hormones of pregnancy and carrying a girl.  But I’m starting to think that part of my crazy emotional roller coaster is being simultaneously excited to meet our sweet baby girl this spring, but being terrified of advancing in the pregnancy not knowing how my body will respond.  I’ve told a few friends that I wish I could have a home birth, not because I actually want that experience, but because I’m terrified of being re-admitted to the hospital.  I’m afraid I will check in expecting a 24-48 hour stay, and end up weak and useless in bed for over a month again.  The fear is real, friends.

The days that the fear stops me in my tracks, I allow myself to feel the weight. I let myself cry and grieve for the normal pregnancy and anticipation I long for.  And then I fall to my knees and pray.  Pray like my life depends on it…because it does.  Those prayers are often of few words, because the emotions are so strong that words will not come.  But I know God knows my heart, and I trust He hears my cry.  He is my comforter and my healer.  I trust in His will for my life, even though I do not understand it.  And when I forget to bow down in prayer, and have lost the strength to hope, I have an amazing community of friends that remind me to hold on.  Friends that remind me it’s ok to grieve, it’s ok to cry and get angry.  Friends that remind me I am not alone; that He never leaves me.

I don’t know why, but this is His will for my life.  My God has called me to suffer for His sake, to be striped of many worldly things so I am reminded constantly that I am not in control.  But He has not given me a spirit of fear.  He is with me always.  Each day is a new chance to give Him praise, to fight in His name, and to show the world His unfailing love and power in my weakness.

Lost and Found

A few years ago, I participated in a drama piece with the amazing church I was then attending.  It was simple…people were asked, in two words, to describe their lives before and after Christ.  We were then asked to write the words on a poster, one word on each side.  We gathered together and one at a time, stood on stage to share our words…our story, with the church.

I was placed last in line.  Holding my poster and sharing my story, I wept in front of everyone.

"lost".

"found".

Those words are my story, even today. 

It’s funny, most days I feel both lost and found.  Lost in a sea of medical terms and tests, fear of the unknown and depression from the known…but found in His embrace and love, found in a peace that I can’t possibly understand, found in hope for the future and joy everlasting.

"May the God of hope fill you with all joy and peace in believing, so that you’ll abound in hope by the power of the Holy Spirit." - Romans 15:3

New Year, New Normal

Being home from the hospital has been so wonderful in so many ways.  I am there when my son wakes up in the morning, and when my husband arrives home from work each day.  I am there to fix my family a real dinner (with two boys in the house that’s how we show love!), and to make sure they have clean clothes.  Thanks to my handy shower transfer bench, I’m able to shower and wear real clothes (no more hospital gowns for this girl!).  

Being home has also come with a whole new set of adjustments…I’m in a land of self discovery.  Before getting sick, I never thought twice about things like climbing the stairs, standing at the stove to cook a meal, or making the bed.  These were things I did as a housewife and mother to provide for my family.  

Now, they are things I need to chose between.  Do I make the bed or shower?  Do I cook a real lunch, or a real dinner?  Do I do the laundry, or clean the playroom?  I must choose, because my body will no longer let me do it all.  This is the life of a #spoonie.

The concept of counting spoons, or being a #spoonie was introduced to me as a hashtag on Instagram when I began following other people with CIDP.  I was of course confused, so I did a little research.  The basic idea of The Spoon Theory is this: each person with an autoimmune disease (or any illness really, but for simplicity’s sake…) starts the day holding a certain number of (imaginary) spoons.  Each task that they complete (getting dressed, showering, completing a morning routine like combing your hair and brushing your teeth, fixing a meal, walking up a flight of stairs, etc.) costs them one spoon.  Once their set of spoons is gone for the day, it’s gone.  If they attempt to use a spoon for something once they have spent today’s portion, it will come out of tomorrows set and they will begin tomorrow already short a spoon.  For the full story, read here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Now that I’m home and trying to live life the way I used to I can safely say that I too and now a Spoonie.  I now start each day with a set of spoons, and can only do that many things.  Once my spoons are gone, I have no choice but to rest, and have others do things for me.  This is particularly difficult when you have a toddler who doesn’t talk yet, and can’t understand why he has to walk himself to his room because Mommy just can’t carry him anymore.

It would be very easy for me to feel sorry for myself, and I do find a good therapeutic cry is sometimes necessary, but as often as I’m able, I choose joy.  I choose to be thankful for this new life, for this opportunity to let others serve me, and to find new ways to serve others.  I have a chance to find new ways to say thank you, new ways to say I love you, and new ways to be the hands and feet of Christ (usually from my bed, the couch, or my desk).

I do not have many resolutions this year…I would love to stay out of the hospital this year (except to welcome our baby girl later this spring), but other than that…

I have been doing a LOT of research about how to keep myself as health as possible, and will be beginning an elimination diet called AIP - it’s the autoimmune protocol for the Paleo diet.  Normally, I hate the idea of changing the way I eat…I love food, and most of the food I love isn’t the healthiest for me.  But when faced with making a lifestyle adjustment in exchange for potential good health…not much contest there.  If changing what I eat keeps me at home with my family, then it’s more than worth any cost or hardship on my part (though I’m pretty sure eating out just got really difficult).  If anyone reading this has heard of/done the AIP diet and has any recommendations, feel free to comment!

So my new normal includes accepting help even when I’m SURE I can do it myself (keep telling yourself that…), taking naps when my son does so I have the strength to make it to dinner time, having a MOUNTAIN of laundry (it’s not just a pile, trust me) when I can only do one load a day, needing to plan ahead when I go upstairs because I won’t have the energy/strength to go back down if I forget something, and having in home therapy (physical and occupational) four days a week.

My new goals include doing a one photo a day 365 project so my camera equipment doesn’t get dusty, learning how to hand-letter, learning how to make all kinds of yummy AIP recopies that 1) won’t put us in the poor house, and 2) can be done in the crockpot, and being OK with not being Supermom/Superwife anymore. Oh, and taking full advantage of using those cool electric carts in stores, and my spiffy handicapped parking sticker!

My body and mind are exhausted.  My heart has never been more full.

Welcome, 2015.

"Please take my life and use it, I’m ready." - The Rocket Summer

New Expectations

Suddenly having your health taken from you really makes you think (often by force…hospitals don’t leave you with much else).  Last week officially marked one month from when this hospital stay journey began, which made me sit and reflect yet again on my new normal.

I’ve learned quite a bit about CIDP since I suspected that was what was wrong (about 2 weeks before my actual diagnosis), and continue to educate myself daily.  One of the slightly scary things about CIDP is that so few doctors really have experience with it, and the prognosis of the illness is so varied from person to person that it’s really impossible to know exactly where I will be in a few months or years.  Some patients go on to make a complete recovery, while others are walker or wheelchair dependent for life.  There is also the real probability of relapse with CIDP (the C stands for chronic), which can be triggered by something simple like over working yourself.  

I don’t say all this to frighten anyone, but more to say that learning all this has forced me to adjust my expectations of what I am now able to do.  Even if I do make a complete recovery and learn to walk without any assistance and can finally pick up my son again (could someone please tell him to stop getting heavier?) :), I will still need to pace myself (doing laundry and going to lunch with a friend is probably too much), really listen to my body, and avoid stressful situations (stress is another relapse trigger).  Here at rehab, they have been very careful in therapy to push my body so it gets stronger, but not push me to the point of overdoing it and causing a relapse.  It’s a fine line.  Avoiding situations that could trigger a relapse of my CIDP has very real implications on how I live my life!  Time for some new expectations, and learning to be ok (and even happy with) my new normal.  The time frame for that potential full recovery is about a year, so I still have quite a ways to go, but I will never stop fighting!  I will be able to independently care for my son someday, I will walk again, and dance in the kitchen again!  I am a FIGHTER wearing the armor of God.

"YOU CAN’T STOP ME!" #116

So, what brings you in today?

I think I’ve gotten that question at least 100 times in the last 4 weeks…no joke.  The other question many have asked is “how are you feeling?”.  Now that I have this handy little blog, I thought I would write it all in one place, for simplicity’s sake.  Here goes!

This crazy journey all started back at the end of September, with numbness and tingling in my feet at night.  The feeling was always gone after an hour of being awake each morning, so I didn’t think much of it.  After a week or so, the feeling moved into my hands as well, and became constant rather than only at night.  Thus began the doctor’s visits.

After having over 10 vials of blood drawn, my primary care had no idea what was wrong.  Every test that was run came back negative or normal.  During the 2 weeks of visits with my primary care, I also started noticing that life was getting harder to do…going up the stairs, lifting my toddler and even my purse were becoming a challenge.  Now I’m officially concerned, but still optimistic that the doctor will figure it out; we just have to run the right test.  I’m fairly certain this was also around the time of my first ER trip, for IV fluids, in the hopes that this was just a bad case of dehydration.  No such luck; the fluids had no effect.

Each time I had my blood drawn, there were at least two days of waiting for the phone to ring.  When the tests came back negative, more were ordered, and the waiting process began again.  During all of this, my muscle weakness continued to get worse; my walk became an awkward limp, and stairs became almost impossible.  I also realized my core was getting weak because I could no longer roll myself over in bed without a lot of effort. Cue the fear.

After he felt that he had done all he could, my primary care physician referred me to a Rhumatologist. More waiting. At this point, I was so weak that I could no longer care for E, so we started staying with family and getting rides to all of my appointments.  I started doing my own research trying to figure out what could be wrong with me,  After several hours, I came across CIDP.  It fit perfectly.

The Rhumatologist completed their evaluation, determined whatever I had was a neurological issue, and referred me to a neurologist.  More waiting to get an appointment.  

The neurologist, Dr. S, only spent 10 minutes with me before he came up with a tentative diagnosis of Guillain Barre Syndrome.  He ordered an EMG, which he said he had an opening for that afternoon in his office.  Progress!  Hope. Waiting.

The EMG/NCV test was performed (my first painful medical test of many), but the results were normal.  Wait. What? 

Disappointment.  Dr. S said he “would have put money” on that being the correct diagnosis, apologized, and referred me to the ER for a spinal tap.  The spinal tap is a more conclusive way to diagnose GBS when other tests have been normal.

I spent the next three days at a very big well known hospital, had countless blood tests run, spent hours talking to psych (are you SURE this isn’t just stress?), and was discharged with no diagnosis.  Their neurologist only saw me once, was sure this wasn’t GBS, and never came back.  The psychologist asked me what I thought was wrong, and I said CIDP.  Still no neurologist.  A spinal tap (or any other advance testing) was never done.  I left feeling worn down, exhausted, and more frustrated than ever.  My body was falling apart right before my eyes and from where I was sitting nothing was being done to change that.

Praise God for my husband.  T took one look at me after I came home (my mom picked me up form the hospital), realized I couldn’t function (no walking, standing, getting myself to the bathroom, or rolling over in bed..and definitely no stairs), and brought me to another hospital that night.  We spent the entire car ride trying to figure out how I had been discharged in such a terrible state.  I still don’t know the answer to that.

Next stop was the Wonderful Hospital.  I was admitted right away, and they immediately began running more tests.  They started with more blood work, of course, but when that all came back normal they tried something else!  This was pretty exciting; could I actually gets diagnosis here?  Hope came creeping in again.

Over the next week and a half, I underwent a second EMG/NCV, this time with a Neuromuscular Specialist (yay!), two MRIs, and one (extremely painful) spinal tap that was later titled traumatic after the doctor hit a blood vessel, making those results inconclusive.  The MRIs were not painful, but emotionally terrifying (small spaces and I are NOT friends).  The EMG was about as painful as the first time, but this time something on the test came back abnormal.  I wanted to cry tears of joy when that happened.  This was a clue; proof that thee was actually something wrong.  One step closer to an answer!  

The spinal tap was single handedly the most painful thing I have ever undergone in my life.  The test itself sent shooting pain down my leg, and the after effects “headache” was like nothing I’ve ever felt.  It was absolutely terrifying, and allowed me to have one of the most intense prayer experiences I have ever known.  God was in my room that night, wiping my tears and holding me as I lay there in the dark screaming.  God was there.

More waiting.

After carefully reviewing every test result, and looking at my symptoms (which continued to worsen), I was given a diagnosis of CIDP.  The prognosis varies wildly from one person to the next, but this is something that I will be dealing with for the rest of my life.  

In all of this, I spent nearly a week unable to see or hold my baby boy.  My heart broke on those days, and the nights were filled with many tears.

Dr. S was right (GBS is very closely related to CIDP and the treatments are the same).  I was right.  Disbelief washed over me, but so did hope.

More waiting.

After speaking with the team of doctors, they determined it was best to try a five day course of IVIG treatments.  A final blood test would need to be done to ensure I wouldn’t be allergic to the treatment, then we could begin.

Waiting.

Tomorrow is supposed to be the magical day. The first day of treatment.  We still do not have the test results, but they are expected tomorrow.  So, we wait and see.  And I try to stay positive.

My body continues to get weaker.  I am able to do less and less physically.  But I know God s with me, and I am clinging to Him.  

So, how am I feeling?  I am relieved to have a diagnosis.  Physically, I am weak and broken.  I am terrified of this new, uncertain life.  I am hopeful that I will walk again.  I am a little angry and hurt.  I am determined.

There are moments of victory, and moments of sorrow, but through it all God will be praised.

This is my new normal.  Welcome.