"…And so we wait in joyful hope"

This summer has been one of such joy!  Simple days full of family and friends, both near and far.  New experiences and new appreciation for re-learned skills.  We're working on jumping (like an inch) in PT now!  Watch out, bounce houses…I'm coming for you! ;)

Our sweet girl is growing beautifully, smiling and cooing, and the little mister is going to be TWO in less than 10 days!  God is so, so good.  

After to many phone calls and a few backflips through red tape, I will be starting another round of IVIG tomorrow morning (yesterday, I started writing this a few nights ago).  As nervous as I am (why do I still get nervous?), I am also excited because this round of treatment will be done from the comfort of my own couch!  Praise God for home care!!  Instead of spending the week lonely, I will be having "coffee dates" with amazing friends who have offered to be my hands and feet this week while I'm attached to an IV.  I am so beyond humbled every time I sit and think about the angels God has placed in my life.  There are no words…you are each more of a blessing than I could ever possibly explain.  Thank you is simply inadequate.

Attending Mass with a newborn is a funny thing.  Just when I think we have prepared perfectly (the baby is fed, the toddler is in the nursery, we actually remembered the checkbook for the offering and our clothes are clean), little miss proves me wrong.  Between feedings, diaper changes, and where is that pacifier again, I'm not sure I have actually heard the homily in over a month.  As a result, I have been trying to really meditate on the phrases that I do hear.  

"…and so we await with joyful hope the coming of our savior Jesus Christ."

What a beautiful reminder.  Waiting with joyful hope…not anxiety or fear...sadness or doubt, but hope…joyfully.  

Living each day with hope, knowing that this world is not our home, that He has something more beautiful than we could ever realize waiting for us.  Even in the midst of suffering and pain, I take comfort this hope for a future with Him.  Consider this life nothing but joy, dear friends.  For God's desire is not a perfect life on this earth, but perfect peace resting in His will.

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?

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.

"Let us run with perseverance the race that is set before us." - Hebrews 12:1

So today was the last day of my first round of IVIG treatments.  Overall, treatment so far has been a huge success, though I did not initially see any improvements.  In the last two days I have regained the ability to bend  my legs on my own (though it takes a ridiculous amount of effort still), and with the help of a walker and two physical therapists, I am able to take a few steps!  Today was the first time in weeks that I have been able to stand up and walk.  It was an amazing feeling!  

Tomorrow, I will be discharged and transferred to an inpatient rehab facility.  We’re still not sure exactly which one I’ll be going to, since getting me accepted into a program has been a challenge.  Prayerfully, I will be going to D.C., but we won’t know until tomorrow.  Fingers crossed!

While part of me is excited to begin PT and get my strength back, there is another part of me that is nervous about how difficult re-learning all basic functions is going to be.  I’m ready to put in the work, of course, but I know it;s going to be the biggest challenge I’ve ever faced.

So tonight, I am preparing my heart and mind for the race I have been called to.  Tomorrow, it’s time to hustle.

Two days ago (and for the last month), I was unable to bend my legs or lift my foot off the floor.

Today is treatment day 5/5…just out WALKING in the hallway…no biggie. 😉

Oh, hey there treatment. I’ve been waiting for you. Day 1/5…let’s do this. #CIDP #IVIG #fighter #theeverydayproject