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.

"In the silence of the heart, You speak." - @audreyassad #ashwednesday #catholic #projectblessed

There have been a lot of tears today. They are tears that I’m sure are exacerbated by pregnancy hormones, but tears just the same. Tears of loss.

I have lost so much of my identity in these last few months, but I am not without hope. I have lost my job, we have lost income, I have lost my independence and sense of adulthood. It is humiliating. It is humbling.

I have accepted the tears much more quickly than accepting help. But if I may have a moment of honesty, I am struggling. And so there are tears.

“You make beautiful things out of the dust. You make beautiful things out of us. You make me new, You are making me new.” -Gungor #CIDP #warrior #givemeJesus #awareness #spoonie #chronicillness

Pain. On of the many symptoms of #CIDP, and one that isn’t talked about. I am one of the fortunate ones who does not spend every moment of every day in pain, but there are still many things I cannot do without pain. I dread simple tasks like getting dressed, or getting in and out of bed. Still, I try to choose joy each day, and remember all the things I am able to do. I am blessed in this suffering; there is beauty that comes from it, goodness that comes from knowing that God sees me and has asked me to be a light in the dark. I pray every day that sharing my story helps just one person. This crazy life is a gift. “Consider it nothing but joy” #choosejoy #CIDP #chronicillness #awareness #spoonie

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

Our car has been temporarily replaced with a lime. In other news, guess who’s finally been cleared to drive?? #choosejoy

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.