One Year

Yesterday marks one year.  365 days from when my first symptoms began and changed my life forever.  It's very bittersweet.

These last 365 days have been some of the most terrifying, exhausting, heartbreaking days I've ever known.  They have also been some of the most beautiful, and I am humbled that God chose me to walk this journey as part of my story.  

I have been changed in a most extraordinary of ways, and have never felt Christ's presence more than I do now.

Today, as I watch the leaves begin to change, I will continue to fight.  To choose joy, even when I want to cry out in fear.  To choose love, because each day I have with my family truly is a gift.  

On the days when I am spent, when the toddler listens "with his nose" as we say and the baby won't settle, I will thank God for being healthy enough to be home with and caring for my babies.  I will remember all those nights in the hospital spent crying and wishing for the strength to hold my son...and I will choose joy.

At the end of the week when I have reached the end of my rope, I will greet my husband with a smile and a kiss, because there were so many nights I longed just to see his face, or receive a hug without flinching in pain.

When I don't want to go downstairs to get something because I just came from there, I will choose joy, and remember that only a few months ago I could not even roll in bed, let alone walk.

When I unload the dishwasher, or complete any other household task that I used to dread, I will praise God for healing and strength, because I celebrated the day I could lift a small plate.

I see now more than ever how blessed I am in this life, and I intend to cherish as much of it as I can.  There are still difficult days...days that leave me wondering if I am at the beginning of a relapse, or if I will someday lose the strength I have worked o hard for months to gain back.  But on those days I try very hard to remember just how far I have come this year...just how far God has brought me, and how He continues to show up in my life over and over again.  

Trusting Him with my life over and over again...I consider it nothing but joy.

Flashbacks and Better Days

This last week was filled to the brim with family togetherness and "festivities" as I like to call them.  Last weekend, our beautiful girl Abby was baptized and welcomed into the Catholic Church!  My mom, sister, her husband, my sister-in-law, and all their children traveled to MD from all over the east coast to witness the glorious occasion and meet E and A for the first time!  It was so wonderful, having the whole family together.  The last time this happened was at our wedding nearly four years ago!  The day before the baptism was spent walking around DC and playing tourist…something I never thought I'd have the strength for again.  The last day my mom was in town we went shopping for the entire day, which is another thing I never thought I would do (at least not without a wheelchair) after my diagnosis.  Praise God for better days!!

This weekend, I bought new shoelaces for my sneakers, and almost cried in the shoe aisle at Target.  The laces currently in my shoes are elastic, and were put there by my Occupational Therapist so I could put on my own shoes.  On really good days, I sometimes forget that a few months ago I couldn't even tie my own shoes (and it wasn't because of my big pregnant belly).  Today, I can not only put on my shoes without assistive equipment…I have the hand strength to tie them, too!

I still have flashbacks…little reminders of what I lost, what I could and couldn't do…and I am humbled.  I am humbled and amazed that six months ago I couldn't dress myself, couldn't walk without a rollator (a cool walker with wheels), and could only climb the stairs in our house if I held onto the hand rail and moved at a snails pace.  My blood pressure was so low that I was often one movement away from blacking out, and I struggled to brush my hair because my arms weren't strong enough.

But God.

Today, those flashbacks are reminders to choose joy, and savor every moment…even the hard ones, because they are a gift.  Every day I can wake up and care for myself and my family is a gift, and I want to spend every moment God has given me to praise and thank HIm for this life.  

Please take my life and use it, God.

Remission and Relapse

One of the things I try to accomplish with this blog is awareness/education.  Since being diagnosed with CIDP I've been presented with a unending list of questions (from my own head, from doctors, from friends and family).  It's funny, usually having a diagnosis brings answers, but this diagnosis is so rare that it seems to have brought more questions and confusion than anything else!  The beauty in this is that we all get to learn together, and maybe teach each other along the way!  I was sent home from the first hospital that I was admitted to because they simply didn't recognize my disease and couldn't figure out what was wrong.  If spreading awareness about CIDP helps even one person avoid that terrible situation, then it's more than worth the effort.

After completing my second "loading dose" (a five day high-dose treatment) of IVIG, many have asked  not only how I'm doing, but 'what's next'.  "So, are you in remission now? You seem like you're better!" has become a familiar conversation.  

The short answer is, firstly, thank you!  I am certainly doing much better than I was during my long hospital stay.  I am able to walk, function independently, and care for my son; God has been so good!  Second, no, I am not in remission.  I am still being actively treated for my CIDP.  IVIG is a slow moving treatment that continues to work for weeks or months after the initial dose, meaning that it's still treating me at this moment, even though there is no IV in my arm.  I make a conscious effort each day to get dressed in real clothes and attempt to fix my hair.  As my dear friend would say, just because I am sick doesn't mean I can't look fabulous!

"Whenever you fast, do not put on a gloomy face as the hypocrites do, for they neglect their appearance so that they will be noticed by men when they are fasting. Truly I say to you, they have their reward in full.  But you, when you fast, anoint your head and wash your face so that your fasting will not be noticed by men, but by your Father who is in secret; and your Father who sees what is done in secret will reward you." - Matthew 6:16-18

Whether remission exists for CIDP patients is dependent on who you ask.  Some will say no, that remission with CIDP is not possible.  Others say that if you have gone 1 year without any treatments you are considered to be in remission. In the spirit of hope, I will go with the second opinion and consider myself in remission when I have not needed any treatments for 12 months.  Right now, we're a long way off from that, so I will continue to fight!

The other R word with this disease is relapse.  As I've written about before, there is a very real possibility that I will relapse after this sweet girl is born.  My doctors are doing everything they can to prevent it, but ultimately it's up to my body and totally out of my control.  A relapse could mean many things; it could be as simple as starting to feel the same symptoms I had before (returning muscle weakness and pain, numbness and tingling, etc.), or as complicated as sudden severe weakness that lands me in the hospital again unable to care for myself or my sweet babies.  In talking with other mamas who were pregnant with CIDP (there's a small army of us out there!), every body is different, and each of their experiences was different.  So we really have no idea what my relapse (if it happens at all) will be like.  The most we can do is prepare for the worst, and pray for the best.  My greatest desire at this point is simply to go home with my new baby, and not need to stay in the hospital alone past her discharge.  That would truly break my heart, but I know God will give me the grace to handle it if that is what He requires of me.

So, to recap: No, I am not in remission, and I may never be.  We are unsure of how long I have before a relapse…could be weeks, months, or (God-willing) years from now.  We are preparing for the worst, but continue to pray for the best!  I hope this helps shed some light on my current situation; please feel free to reach out and ask me any other questions!  Comment below, or drop me a note by contacting me above…I would love to hear from you!

Today is a good day, and I will continue to fight and choose joy!

"You make me brave, You make me brave

You call me out beyond the shore into the waves

You make me brave, You make me brave

No fear can hinder now the love that made a way" - Bethel Music

IVIG - take 2!

Last week was a big week!  I spent five days (as an outpatient) at the Cancer Care Center in Frederick hanging out with some awesome people and getting my IVIG on!  Those chairs bring back memories…they're the same ones that are in the hospital rooms.  This time around, I am strong enough to operate the chair myself!!  Needing to be in treatment for more than 4 hours means arriving early…which means getting your choice of chair (very important, once you learn that only 2 or 3 of the trays actually function)!

See that bottle?  This treatment is only made possible by generous blood donors (IG is a blood product).  It takes approximately 2,000 donors for one bottle of IVIG.  I had anywhere from 2-4 bottles each day during my 5 day treatment.  To those of you that are blood donors, thank you from the bottom of my heart.  You have saved my life. To those who have never given blood, please consider it!  What a beautiful way to show Christ's love to one another.  If I could donate myself, I would (I've always been anemic so they weren't interested in my donation).  :)

My sweet hookup for the week!  The stuff on the left is Benadryl, to prevent allergic reactions.  It made me SO sleepy, so I didn't really get a chance to do any of the cool activities I planned on (reading 3 books was a bit ambitious).

Still smiling! 

If you're really awesome, they let you keep the IV in your arm overnight at home so the nurses don't need to re-stick you in the morning!  That fancy net keeps it all nicely contained.

So the number one question I've been getting since the treatment is…how are you feeling?!?

My answer remains the same as always: today is a good day!  

IVIG works differently in everyone, but for me it is slow to show itself.  I don't feel any different for the first 3-4 days of the 5 day cycles.  The last day is when the improvements generally begin; last time it was with the ability to bend my legs again.  This time, I've noted my muscle pain is reduced, which was one of the outcomes I was praying for!  Because of the latest IVIG treatment, I am now able to do things like put my socks and shoes on with minimal pain and discomfort; a huge victory!!  In the last day or two, I have also noticed that it's getting easier to walk up the stairs - still not "normal", but definitely improved.  Although I know it is not a cure, I am excited to see how the IVIG will continue to work over the coming weeks!  Living with CIDP  is a daily reminder to be content.  There are still things I cannot physically do, but I choose to focus on the things I can do, celebrating even the smallest of victories.  Last night, I danced (badly…I can't dance) while washing the dishes.  A few months ago, I couldn't lift an empty pot out of the sink.  God is amazing!!

We are praying most especially that this treatment will prevent a relapse after our sweet girl is born in less than two months.  Thank you for joining us in prayer!!

Rejoice. Be Patient. Persevere.

"Rejoice in hope, be patient in suffering, persevere in prayer." - Romans 12:12

Yesterday was one of those days.  The days that God speaks loudly in your ear and says "I hear you, child. See how much I love you?".  An answered prayer in a very big way for our family.  He hears us…and oh, how He loves us!!  There were smiles, lots of cheering, and tons of gratitude.  There was also a fantastic trip to the park with my sweet boy, which filled my heart to the brim.  All that happiness and rejoicing.  My strength for today.

Today is one of those days.  The ones that force you to search yourself for strength you're not sure you have.  The days that push you to rely on something bigger than yourself…to admit that you can't do life on your own.

These are the days that bring me to my knees.  The days of rejoicing. The days of patience.

Today I am having a repeat EMG/NCS test to see how the first round of IVIG (prayerfully) improved my nerve health.  The test takes about an hour, and isn't terribly pleasant (it involves electrically stimulating my nerves and putting needles in my muscles).  It is not as bad as a spinal tap, but would much rather be snuggling my baby toddler.

Today, with even more intent, I choose joy.  I am choosing to rejoice in the hope I have been given.  I choose to be patient during the suffering of the tests, and to persevere in prayer that the tests show some improvement.

Today's goals:
-Rejoice
-Be patient
-Persevere
-Wear pink

Choose joy.

Don't you worry 'bout a thing

"Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God." - Phil. 4:6

There are so many wonderful verses in the bible about trusting God in all circumstances.  They always bring me such hope, peace, and joy knowing that He is in control of my life and constantly working for my good.

I have officially been scheduled for another round of IVIG this month.  It will be the same 5-day treatment that I had in December, but this time it can be done as an outpatient.  I am SO thankful to not need to be admitted to the hospital during my treatment, even though I will still be gone and "hooked up" for up to 8 hours a day.  I'm planning on doing some reading, some blogging, and lots of praying.  I'm hopeful that I will not have many of the unpleasant side effects that can come from the treatment, and trusting that God will be with me as He always is.

I'm praying that this second round of treatment will help alleviate my remaining pain and other symptoms, and allow me to lead a more active life (Eli isn't getting any slower in the running department).  I'm also praying that this treatment will prevent a major relapse once Abigail is born (something that I've been very concerned about, and is common with CIDP patients).

Would you join me in prayer, friends? Pray that this treatment is successful, with minimal complications.  Please also pray for my emotional health, as I will be away from my sweet baby toddler which has become especially hard after being hospitalized.  Let us also pray in a special way for those who are suffering with illnesses that have no treatment, no sign of relief, and those that don't have access to the treatment they need.  May God comfort them and surround them with His unending love.

My treatment will begin the week of the 23rd, after my EMG/NCS are re-done (to compare with Decembers test results).  How may I pray for each of you?

The Journey So Far

It took MUCH longer than I anticipated, but I am happy to report that my About Me page is no longer blank!  Want to read the whole story (so far) about my CIDP journey (with never before seen totally honest pictures)?  Look no further!

http://relentlessjoycidp.blogspot.com/p/about.html

The Sacrifice of Family

- Today is my first time participating in the blog link-up with Blessed is She!  If you are looking for an amazing community of Catholic women and great devotionals, I really encourage you to check them out!  Today's #BISsisterhood topic is family. -

Nothing shows a person's heart faster than a crisis.  This is especially true if the crisis is a marathon, continuing for days or weeks with no end in sight.  God has placed people in my life with such a heart of sacrifice and service.  It is humbling, and inspires me daily.

My family.

They have made some of the biggest sacrifices in these last few months.  As difficult as this journey has been for me, it has been just as trying for them; the uncertainty, the fear, the exhaustion…they are warriors, too.  There are so many family members I could write about here, but today I will focus on my little unit; Thomas and Eli.

During my time away, my husband lost his wife.  The dirty dishes, the laundry, the moving boxes, the need for companionship and encouragement…they didn't end just because I was in the hospital.  So he sacrificed.  His time, his comfort (rest, home cooked meals, time for reflection), his needs, his sanity…he fought to keep our family going when our life as we knew it came to a screeching halt.  Watching the person you love become completely helpless in a matter of days is so frightening.  Carrying on and putting a smile on your face asks that you reach to the depths of who you are and who God is.  This fight begs for bravery you didn't know you had.  Thomas is my rock on this earth.  My lover, my best friend, my partner in this crazy life and the father of my children.  I would be lost without his amazing soul in my life.

Eli may only be 18 months old (HOW did that happen??), but he also had to sacrifice while I was away.  He lost his mama, and that breaks me.  I cried every day for him, and even when he came to visit, it was too painful to hold him.  He lost the mama that could lift him high and make him laugh, the mama who would sing the same set of songs each night before bed, and snuggle him just right.  He is a warrior too, and I will never forget that.  We are blessed abundantly, and Eli was cared for, played with and loved by family only a few minutes from the hospital.  My mother in law is a warrior, you guys.  She stepped in to love my little boy as her own without being asked.  She took him into their home (so Thomas could continue to work) for weeks, where he was close enough to come visit me easily.  There is no way to repay someone for that sacrifice.  I am blown away by her incredible heart of service and love.

There are so many others, family and "family" who have done SO MUCH for us in these last few months.  I wish I could take the time to acknowledge each of you here, but this post would become a book!  Please know with certainty that your amazing sacrifices have not gone unnoticed or without appreciation.  Someday soon, I will write a post about the amazing community of warriors I have found on this journey.  You all amaze me.

Thank you is not enough.  Those words will never be enough.  So I will choose joy, living each day like the gift that it is, and loving fiercely until He calls me home; which, God willing, will be many beautiful years from today.

"You have called me higher, you have called me deeper, and I'l go where you will lead me, Lord." - Called Me Higher, Sons & Daughters

An Update and Fresh Look!

Hi, friends!  A lot has changed since my last big update, including this blog!  Welcome to the new home of Relentless Joy!  I am SO excited about this beautiful new template, and to be set up with my good friend Blogger, whom I'm much more familiar with.  One big logistical change I'm loving is now readers can comment on what I write!  I am super excited to be able to interact with all of you wonderful people out there on the internet. :)  I'm hoping that this change will make my blog slightly more accessible to everyone, and give people a way to reach out even if we've never met.

So, about that life update…

Things continue to go relatively well; I am reminded each day of my limitations, which continues to be humbling.  Many have asked how I'm feeling, and it's actually slightly difficult to answer.  My usual response is something similar to "today is a good day" since my condition can change literally overnight.  I am certainly much stronger than when I was in the hospital, but am still struggling with muscle weakness.  I feel it most when climbing stairs or moving from standing to sitting/vice versa, but any "big" movement is a reminder that I cannot physically do what I once could.  And most days, that's ok.  I've accepted it as much as I'm able today.  I've been dealing with a pins and needles feeling on one side of my back, which tests my patience, but I know it's part of the neuropathy with CIDP.  My blood pressure continues to remain an issue (it's too low, too often), but I have medication that helps bring it up which allows me to function without blacking out - a great thing when chasing a toddler.  Praise God for helpful doctors!

I still get tired easily, but it's getting better.  I was able to go to the mall and walk around for a bit (under an hour) for the first time since September…it was a great day!  Doing little things like that help me feel normal again.  I try to do one "new" thing a week; it helps keep me joyful and appreciative of the everyday.

I finally had my first followup with my neurologist since being hospitalized, and it went well!  She was pleased with my progress, and listened as I explained my current symptoms.  Dr. L wants to redo the EMG/Nerve Conduction Study to compare it with the one from December.  I'm interested to see the comparison, but not so excited about the test.  It's not as bad asa spinal tap, but it's still fairly uncomfortable.  Still, I know how important having up-to-date data is, so I'm happy to undergo the test. We have also decided since I am still having symptoms to do another round of IVIG- this time as an outpatient!  I'm excited to see if this treatment combined with my continued PT will get me closer to 100%, at least for a little while.  Dr. L is also hopeful that if we do another IVIG treatment that I might not relapse after baby #2 is born (relapse of CIDP is common in the weeks postpartum)…but I won't hold her to that. :)  It will be the same 5 day treatment I received in November/December, and will take about 6 hours each day.  I expect there will be lots of blogging and reading that week!  Dr. L also gave me an order for outpatient physical therapy…I'm hoping to start that ASAP once I can figure out what to do with Mr. Big Cheeks.

All of this coupled with my chiropractor appointments (thank you, pregnancy - 3x a week initially), and OB appointments (both with my regular OB and a high risk OB) means I go to a LOT of doctors appointments.  I'm becoming an expert! MBC was feeling a bit left out, so he decided to get an upper respiratory infection and a double ear infection back to back.  The pediatrician's office is much more cheerful!

But the good (ok, great) news is that I was finally cleared to drive!!  YAY!!!  One more step towards independence…God is so good.

Lent could not have come at a better time. It's so cold outside that we have been homebound for too long, leaving room for loneliness and depression to set in.  Lent is the perfect time to really dive into God's word and renew my spirit.  I am thankful for this season of reflection, longing, and prayerfully - change.

Speak, Lord, your servant is listening.

To the average person, this isn’t much to write about, but for someone with #CIDP its huge. This is the first time since September that I’ve been able to sit on the floor with my legs “crossed”. I won’t be able to get up without help, but being able to get my legs bent this far is such a huge milestone. Thank you to all the physical therapists and doctors that have made this moment possible, cheering me on and believing in me every step of the way. #choosejoy #chronicillness #ChronicInflammatoryDemyelinatingPolyneuropathy #spoonie #warrior

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.

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

"Holy Spirit you are welcome here…"

The prayer on my heart today as I realize over and over my need for more of you, Jesus.  I fall to my knees, a weak and humble servant.  Use me, Lord…use me for your glory.

One of the things they tell you is that often with a life changing diagnosis, you will go through the five stages of grief. As prepared as I think I am for this reality, I never am. Having your body completely betray you day after day is so difficult. Making the decision to #choosejoy is never easy, and fighting for a normal life every hour is exhausting.

Holding onto my faith today knowing He is with me.

“You make beautiful things out of the dust.” - Gungor #chronicillness #CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #remarkablyrare #warrior

Happy mail today!! I fell in love with @remarkablyrare from the first moment I found them and read their story. Those of us with a rare disease and the friends and family who care for us are so beautiful and strong! We celebrate that we are fighters and #remarkablyrare!! #fighter #CIDP #chronicillness #choosejoy #ChronicInflammatoryDemyelinatingPolyneuropathy