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.

IVIG-Versary!!! (1 YEAR)

Today, I celebrated an entire year from my last IVIG infusion!  For those of you with CIDP, you know what a huge deal that is.  

One year of not being stuck with needles for days.

One year of no Benadryl comas.

One year of no aseptic meningitis, migraines, vomiting, diarrhea, etc.

Today, I celebrated with the boys by playing soccer with them outside!  We ran, we kicked the ball, we walked around the neighborhood.  A year ago, I could barely walk let alone kick a ball.  

Continuously thankful for Dr. Burt and HSCT and what its given me, LIFE!!!

11 Months!!!!!!!!!!! (Day +336)

11 months snuck up on me.  I looked at the calendar and was shocked that I missed my monthly birthday!

April & May have been busy.  We've put our house up for sale (still waiting for an offer) which involved a ton of work.  I think I said last month in my post but I'll say it again, when you are only able to survive day to day, things get pushed aside.  Our house sure did.  It feels so good to be able to see it how we always wanted it to be.

I've been able to go on walks with the boys, play at the park, keep up with house work, do my job, grocery shop and more!  

My body is still healing but I've never felt better.  How I feel now, was only a dream a year ago.  This is what we all hoped for and dreamed could be a reality.

We are finally making progress with our oldest son.  He really struggled with me being ill and him being cared for by everyone else.  

He still has his bad days and moments but it's getting better and better the more he sees that mommy is getting better and better.

Next week is a big week for me.  It will have been one year (ONE YEAR) since my last IVIG treatment!  I never thought IVIG would no longer be in my life.  I thought that life was going to be that way forever.  I thought that the "red weeks" were going to be a part of my families life forever.  I thought that life was going to be that horrible cycle of sickness.  

I still can't believe it!  This is like winning the multi-billion dollar lottery of life!  

The weight/gravity of these past years have started to creep up on me emotionally.  When you're chronically ill and facing uncertainty, parts of you turn off in order to survive.  I turned off, so did my husband.  We are figuring out again what healthy looks like for us, for our family.  

Symptoms I'm still dealing with?

-numbness in my toes

-muscle strength (I try to do more than my body is ready to do).

-insomnia (my brain won't shut off at night, I keep thinking about what needs done, what still to do, what could happen...).

Besides that, not much else to report.  I haven't seen a Dr. since a cold I had over the Winter!  Want to know if HSCT works?  Look at my insurance history for the past year, you'll see IVIG, HSCT, PT, then nothing!  Absolutely nothing.  It's amazing.

I'm headed to Chicago for my one year Followup, June 1-3.  I expect that I will be done taking my last medication, I expect them to say I'm still in remission, I expect Dr. Burt & Dr. Allen to say I'm doing great!

Yahoo!!!

10 Months (Day +306)

Time is flying by now.  At the beginning, it felt like a year would never get here.  Now, it's around the corner.

We've been discovering, exploring, being outside as much as we can.  It's a very different change of pace from what we've been used to.

We've been fixing up our house to sell.  I've been able to help and do lots...things I never would have had energy for before HSCT.  Replacing blinds, air vent registers, door knobs, light fixtures, mudding, sanding, painting, moving and lifting boxes and furniture.

We are getting excited about our next home and look forward to this part being done.  It has taken a lot time to fix our house that had been neglected for 5 years.  When I got sick with CIDP, we had a new baby and we didn't know what was wrong with me.  Our life went from joyful moments, to those of fear and dread and in turn, we neglected our home.  We piled boxes in the basement instead of going through them because we didn't have the energy to deal with them.  Simple repairs weren't ever simple and often involved more time than we (my husband) had to give.  I had no extra energy to spare towards anything but living.

As I look back on my CIDP life, I realize just how bad I felt, how much pain I was constantly in, how little sleep I got because of the pain, how miserable life had become on my IVIG.  I think that in order to survive it, I blocked out a lot of it.  It seems that every treatment reality would come barreling in.  When the vomiting and migraines began, my thought life wasn't healthy.  The darkness always crept in...those were the moments/days when I wanted to give up and stop fighting.

For me, HSCT, saved my life in more ways than one.  I don't know how long my CIDP will be in remission.  But I do know, I don't take any day for granted.  Every step I take now, I know that it is a gift.  I was so close to losing my ability to walk...I still can't believe it some days.

So, happy 10 months to me!  :)

9 Months (Day +275)

9 MONTHS!!!

I've been busy.  Working more, taking care of the boys, and working on our house are the things that have consumed my time.

We've decided to sell our home of 9 years and move somewhere that has a great backyard for our boys.  

Before HSCT, this dream was just that, a dream.  It was beyond possible with my treatment schedule.

Things I've realized in this process:

-when you're sick all the time, you don't have energy to go through stuff.  We accumulated 5 years worth of stuff in our basement that we are finally able to deal with.

-when you're sick all the time, you don't have energy to do simple repairs and maintenance.  We had let a lot of little things that needed fixed that we didn't have the energy or capacity to deal with. Those little things add up over time.

-I had way too many sick clothes.  You know what I'm talking about.  Those grungy, around the house, baggy, hole filled comfy clothes.  Half of my wardrobe consisted of these clothes.  I quickly realized, I didn't need so many sick clothes anymore and got rid of over half!

Thoughts on life:

-I've been living like a sick person for the entirety of my children's lives.  They've never known me, not sick.  Changing this view has taken time and lots of conversations.  We are finally to a point where my oldest son isn't asking all the time where my nurse is or if I'm still sick.

-The damage that my CIDP caused was not just to me and my body.  It effected my entire family.  The freedom we are all experiencing from the openness in our calendars has been amazing.  Not having the burden of IVIG and then the sick week recovery is something I won't take for granted.

We are so excited about getting a home that's better for the boys and what they need.  It's no longer always about me but about them and their futures.  I love that!

Onward and upward!  Post 9 months is feeling great!

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Overall symptoms:

The only CIDP symptom I still have is slight numbness in my toes and fingers.  

THAT'S IT!!!

The muscle weakness is gone.

The electricity feeling is gone.

The chronic fatigue is gone.

I'm amazed by my new body and the new things I can do.

I did get a sinus infection that knocked me on my butt for a week but antibiotics cleared it up and I'm all back to normal.

Our boys celebrated their birthdays in the last month and we had a great time decorating and making memories.

8 Months

How can it be 8 months!!!

Not much to report.

I put together my HSCT memory box!