I'm ONE!!!!!

How can it be? An entire year since my life changed.  One year ago, the tingling and burning in my body stopped.  One year ago, one very painful chapter closed while a new chapter opened.  One year ago, we watched the fireworks over the lake and felt hope again for the first time in years.  One year ago, began the emotional healing from years of slowly dying.  

My husband and I were talking the other night about how hard life was.  How he's finally in a healthy place emotionally and spiritually.  I told him how hard it was for me to watch him turn off and fade away.  It was what he needed to do in order to handle the way our life was.  He then told me how unbearable it was to watch me slowly dying.  Slowly dying, it really was that.  I was approaching the end of my rope.  I don't know how much longer I could have gone on with the treatment and schedule we had, how long I could have kept working, how long before we would have had to move in with my parents for help.  At the end of that conversation, we both had tears in our eyes.

This year has been one of healing.  My body had to endure a hard reboot in order to stop the CIDP.  I've lived this last year in as much isolation as I could to reduce my exposure to any major illness.  Thankfully, my new found appreciation for being OCD, has kept me well all year; no hospital stays, no emergencies!  Only a few colds that knocked me out for a few days.

I've started to feel things again, in more ways than one.  I hadn't realized how much I had gone into an emotional protective mode in order to survive it all.  I only felt what I had to and everything else, I managed.  

My ability to physically feel, specifically in my hands and feet is getting better and better!  My fingers are only slightly numb. I expect them to get back to normal in the next few years.  My feet and toes have more sensation than before.  My toes are still numb but nothing like they used to.  I remember in the hospital feeling like I had just taken off 5 pairs of socks.  It was an amazing feeling.  My muscles are working great and I'm able to walk and run and bike and play like I did before CIDP became an acronym we knew by heart.

If I had to sum up this year, it's been one amazing feeling after the other.  This journey to healing has been hard, so hard, but its also been amazing.  I now have the opportunity to share my story, my life, with countless people all the time.  I get to share about the loss of life and the desperation we had on finding a cure.  I get to watch these same people process the possibility of not having to be on medications (that have tons of side effects) for the rest of their lives.  

I am so thankful that I get a second chance at an almost normal life.  I am so thankful that my boys won't always have memories of mommy being sick all the time and not being able to play.  I am so thankful that my husband no longer has to stand by and watch me slowly fade away.  I am so thankful that we are able to heal from these 5 years of struggle and pain.

We received a ton of support and love from our family and friends.  This has been a year that I can look back as the one in which my community came together to help me live again.  You guys ROCK!!!!

Despite the healing, there are some wounds that will always remain, wounds from people that we once called friends.  I can understand why they left.  I can see how they could have thought everything was fine, because from the outside, we looked completely fine.  These friends didn't understand or maybe care to understand what was happening in our little world.  I think they missed out.  They missed out on witnessing a miracle up close.  Seeing door after door open was amazing, and we kept walking through.  We kept trusting that this was what we were supposed to do, and God kept providing.  These former friends, wounded us greatly.  At a time when we needed the most support, they chose to push us away.  Sadly, many people take this route, leaving because they don't know how to help when the situation is so bleak.  The best thing you can do is simply show up.  Bring dinner, play with their kids, even to sit and read a book in the same room may be just what your friend needs.  I emplore you, do not leave your friend when it gets hard, sit with them between the rock and the hard place and pray together for relief.

What's next?  I don't know.  Who knows what this next year will hold.   Maybe we will get back to singing again.  Maybe we won't.  But it's amazing knowing that it's at least an option.

To a new life, as we continue on our journey to healing.

One Year Followup

I can remember this time last year so vividly: packing myself for transplant, packing the boys for the 4 weeks they'd be away, saying goodbye to them, crying big heavy tears, the fear and strength all rolled into one.  It felt like the next year post transplant would never come, and yet, here we are.

Wednesday morning, we flew out of BWI to head to Chicago for my one year follow up!

We had lots of time to be quiet together (which is hard to come by with two little boys).

We got to the Worcester House around 3 PM.  I had never stayed there so I wasn't sure what to expect.  The rooms were comfortable.  They provide all linens for the bed and bath as well as complimentary shampoo and hand soap.  The kitchen has all appliances but no dishes or cookware.  We brought some plastic bowls from home and some plastic cutlery.  This let us get some basic essentials (cereal, milk...) so we didn't have to eat out all the time.  If you're staying for longer than a few nights, it would be helpful to have: a pot, a pan, spatula, dish soap, aluminum foil, etc.

Wednesday night, we were able to meet up with other HSCTers.  Some were vets, some were going through pretesting & mobilization and others were there for their initial evaluation.  It was great to be able to share stories and experiences to help squelch fears of unknowns.

I was able to meet Wendy & Eddie Nash. Wendy had HSCT 4 years ago and is doing great!  Her husband, Eddie, is the one who gave me the final nudge I needed to apply and investigate this further.  I'm forever thankful for them and the simple way they helped change my life.

Pictured is me, Wendy (4 years), Megan had just had her mobilization chemo and was handling it great!  

There was a large group of us CIDPers (which is odd because the disease is so rare).  The neurologist that we see is only there 2 days/month so we all get scheduled around the same time.  

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Thursday started with us going shopping at the Lego store for our boys.  We had tons of fun.  

I was scheduled to see Dr. Burt at 12:30...we didn't see him until almost 2:00.  We are used to the waiting after all the years of appointments so we made the best of it by reading and taking goofy pictures.

Finally, we get called back.  Paula comes out and takes us to our room.  They must have been short on space because this room was the size of a closet.  So funny. We sit, we chat, we exchange paperwork.  Dr. Burt comes in a few minutes later.  We talk about this past year, no CIDP medications have been taken since before transplant, I can stop taking the antiviral medicine.  I'm off ALL medications!!!  No steroids, no IVIG, no Benadryl, no Tylenol, no anti viral, no anti fungal...the list goes on and on.  And I don't have to TAKE THEM!!!  Yahoo!!!

We talked a bit about vaccines and getting my titers checked and which vaccines I should avoid.  Side note: no matter what your stance on vaccines, please be careful with the flu shot.  It has been, HAS BEEN, proven to cause GBS in recipients.  GBS stands for Guillain-Barre Syndrome and is the acute form of CIDP.  I don't wish this disease on anyone so if you can prevent it, do.  Don't take the risk unless absolutely necessary.

Ok, back to the appointment, he listened to my heart and lungs, had me stand up, walk toe to heal across the "closet" sized room.  He said I looked great!  Quarters were so cramped, I didn't get a picture this time.  No worries.  I'll be back in a year for my 2 year checkup.

After the appointment, we went upstairs for my blood draw.  Nothing spectacular here.  They took about 10 vials, bandaged me up and sent me on my way.

Now, we had the afternoon and evening to do what we wished.  Out of all the times I've been to Chicago over the past year, I've never been well enough to see any of the sites.  So, we headed to the bean!  

Next we walked and walked and walked and walked and walked!  We walked over  4 miles!!!

At the end of the day, we went to one of our favorite eats, DOC B's (I'll have to let Dr. Burt know they named a restaurant after him, hahaha).  

I ordered ribs, I wasn't expecting that much!  Thankfully, Jesse ordered a salad so we shared.  A perfect meal.

Before we left, I noticed this piece of art that I couldn't pass up.

"What lies ahead of you and what lies behind you is nothing compared to what lies within you."  A truth that all those going into the transplant should remember.

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Friday started extremely early.  I had to be at the hospital for my EMG/NCV tests at 7:00.  I was up by 5:45 so I could get ready, finish packing, and have enough time to walk over.  

Breakfast on the go at 6:15.  I'm not a morning person.

I made my way to the 18th floor for my testing.  The kind man Vinny was there waiting to take me back to the room to begin my NCV.  You must know, Vinny is excellent at administering this test.  He's fast, he's efficient and he's a great communicator.  If you have to ever get this painful test, he's the guy for you.  He was happy with the way my nerves were reacting, good velocities.  

This is the setup of the computer and equipment for the tests.

This is a close up the tool used to test the nerve velocity.  The two electrodes send a shock into the nerve, the computer reads the time it took to go from point a to point b, then thy measure the length of the nerve they just tested with a tape measure.  Physics for you distance / time = velocity.

Dr. Allen came in and finished the remaining part of the tests.  The EMG is not pleasant.  Imagine a acupuncture needle.  Now imagine an electric current going through that needle in your leg muscle.  Not fun.  I then have to make my muscle flex with the needle in my muscle.  Not pleasant.  All the tests finished and I don't see Dr. Allen until 11:30.  Free time!

I grab an iced coffee and a donut from the amazing Dunkin Donuts in the hospital (during transplant, this was my morning ritual) and I have some time to relax.  Jesse checked us out and packed up the rest of our stuff and brought it over to the hospital.

I then had the privelage of going up to the 16th floor and meeting a friend from the FaceBook page for HSCT.  The "Burt Pages" are great and provide so much support.  I'm so thankful for technology.  We had a good visit. :)

Then it was time to head up to floor 20 and see Dr. Allen.  We went over paperwork, I answered the usual laundry list of questions about pain, medications, fatigue, depression...etc.  He told me that me tests were nearly identical to the ones from last time!  Which means I am officially in remission!!!  The CIDP has been stopped!  I asked him about what I should expect this year.  He told me much of the same, getting more strength, balance, muscle mass...etc.  He told me I was doing great and to call if I ever have a concern.  

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Then we began our journey home!  There's always a lot of hurry up and wait.  Getting to the airport was just that.

The plane ride was beautiful and I took this picture to show our son how close to the clouds we were (he often says that he wants to touch the clouds).

And just like that, our one year follow up trip was done.