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!

7 1/2 Months! (Day +226)

Today was an emotional day.  I was officially discharged from physical therapy!  I felt joy, sadness, pride, thankfulness, and a little fear.

I got this awesome medal and TShirt.  I think the medal will go in my transplant frame (a project I'm still working on).

This team, brought me back from nothing.  When I started 6 1/2 months ago, I could barely walk, I had little to no muscle, barely any strength, no balance, extremely tight tendons & muscles.  When I started, I had no hair. (Side note: funny to meet people for the first time when you look nothing like yourself).  They helped me learn to use this new body, how to trust it again after years of distrust and being fearful of the next step.  They didn't just work on my body, but my spirit too.

Sarah & Tracy, you will always be a part of my story.  Thank you for the care and love you showed me these past 6 months.

Things that I can do now:

-stand on the tips of my toes

-balance on one foot (it's wobbly but I can do it)

-squeeze 60+ lbs in each hand (prior to HSCT, I was lucky if I could do 20 lbs).

-endurance is back

-energy is back

-extreme fatigue is gone

All in all, it's like having a new body again.  I'm still not 100%. I still have some numbness and tingling, but if that's all I have to deal with? I'll take it!

6 Month Checkup!

Can you all believe it?!  It's been 6 months since my transplant!  

(Jesse being contemplative).

Wednesday we flew to Chicago from Baltimore.  It was a good travel day.  Nothing eventful, just lots of walking (which I handled just fine).

When we got to our hotel, we unpacked a little and decided to go to one of our favorite restaurants called The Local.  It's a little strange to be somewhere so far away from home and it feel familiar, know your way around.

After dinner, we came back and addressed our Christmas cards.  I know you might be thinking, why would you do that in your down time?  If you have or have had children, then you know that trying to address Christmas cards, is a very lengthy process and little ones like to "help".

Didn't sleep well...to antsy about appointments.

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Thursday:

We ran into some HSCT folks in the lobby of the hotel at breakfast.  (I just ordered my #HSCT shirt).  A funny thing about sharing life on FaceBook, people recognize you. ;)

Cathy Groesbeck who is here for mobilization and harvest.  We chatted for a bit. :)

Then I saw Michele Richey!  Michele shared some of her head coverings with me after she went through transplant 6 months before me.  I completely blanked on who she was when I saw her (I blame chemo fog). ;)

Thursday was my EMG & NCV tests.  If you are unfamiliar with what these tests are, they are to test the nerves and muscles reaction to electric impulses.  In the past, they have always hurt, they have always shown slowing and nerve blocks.  Today, they really hurt and showed NO NERVE BLOCKS AND LESS SLOWING!!!

After this, we went upstairs to meet with Dr. Burt.  When we got there, we immediately saw my CIDP transplant birthday buddy, Jim Crone.  He's doing great too and hasn't had any CIDP Meds either!

Next was the main event, Dr. Burt!  He and Paula came in.  Paula tested the strength in my hands and I was able to squeeze over 75 lbs!  My previous results were in the teens and twenties.  An incredible and definite improvement.

Dr. Burt asked me how I was, what has changed, if I've been hospitalized since transplant and what medications I'm still taking.  At the end of it all, he asked me to walk (heal to toe).  Guys, I did this with ease, I did this without thinking about it, I did this when 7 months ago I would have fallen over.  

He told me I could come off two of my post transplant medications!  I will still be taking acyclovir (prevents shingles) until one year post transplant, vitamin D (I'm chronically low), and alpha lupoic acid (helps with nerve regeneration pain).

After everything, he says, "So it worked?"

"It sure did." I say.

"Now, go tell people about how it worked!  Get more people here." He tells me.

"Will do! Gladly!"

I'm forever thankful (just like my shirt says) that this worked for me.  That my life is no longer dictated by my treatment schedule.

After my tests and appointments, I was able to meet up with a few Transplant friends.  First on the list, David Vilfranc in the blood draw center.  He's here for mobilization & harvest.

We shared stories, I answered transplant questions and we encouraged each other.  You've got this David!

Next up were some friends at Prentice, on 16 going through transplant, Kelly Erickson & Jen Davis.  It was a little surreal being there, on my floor, walking about with ease when before I could barely move.  I suited up in gloves, apron and a mask to ensure I brought nothing germy into them.  It was a sweet time.  We shared stories and I was able to encourage them that they are almost done (even though it doesn't feel like it).  

Jen and I started seeking HSCT at the same time last year.  My insurance approved right away.  She had a fight and had to change insurances.  But she's here now and kicking her MS to the curb.

So thankful for these sisters.

I also got to see a few nurses who took care of me (amazingly, they remembered me).  I was able to thank them for the care they showed me when I was so sick during transplant.

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Friday, I met with Dr. Allen (neurologist) to go over the results from yesterday and compare them to last years and Aprils tests.  He also tested my strength.  My hand strength was 76 lbs in my left hand and 77 lbs in my right!  According to my Physical Therapist at home, I'm at 85-90% strength!  That's something I never thought I'd hear.  He checked my reflexes (something that I haven't had in over 4 years). They were all reactive!  At the end of it all he said, "It looks like your CIDP is in remission."  WHAT?!?!  Remission?!?? Words I never thought I'd hear.

And now, we go home to Baltimore.  We get back to living again.  We get back to our boys.  We continue our healing journey, together.  

P.S. Ran into Bryan Hinkle at the airport on our way home. He is 2 years post for CIDP and also doing great!