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!

THANKFUL! - 5 months (Day +162)

Update:  

My toe has finally healed!  After 9 months, I now have skin on my toe.  Thank you team of toe Dr.'s!!!

I completed my final blood draw on Saturday!!!  Amazing feeling.  My blood tests have come back great every month.  This week, my WBC was a little low (3.7), so my Chicago PA told me to stop taking a medication (bactrim) that can cause the WBC to be lowered.  

I had my re-evaluation today at PT.  I'm about 85% better than I was when I started back in the Summer.  85%!!!!!!  That's crazy!  My strength is getting better and better.  Muscles that were asleep are waking up which is causing some major back and neck pain.  All things we are taking care of with massage and heat and ice, but still very painful.  My therapist told me if there was an award for "most improved" I'd get it.  The staff have been amazing and helped so very much.

Feeling things is becoming a new thing. :). I was speaking with my 4 year old about things that I am thankful for and I told him I was thankful for Dr. Burt and his team because he helped mommy get better.  He replied, "Dr. Burt, he helped you feel again?"  Yes, my love, he helped me feel again (and someone has been paying way more attention than I thought).  When I get up in the morning and put my feet on the floor, it hurts, LOTS.  My feet lost so much feeling, the nerves are trying to come alive again, and it hurts.

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Thanksgiving has a new meaning this year.

Lots and lots of people helped us get to Chicago.  Others helped once we were home with the boys and meals.  Our family and friends (I call family), have literally filled the gaps for me.

I read this before transplant, on a blog, it has stuck with me all this time.

"We can live in a way so that our children will be able to say, 'Not one moment of my life did I wonder if I was adored. Never, ever did I feel alone.' And they will pass it on. They will answer the phone. They will start packing. They will know that when your people are hurting, you go. You show up. Again and again forever. That is family. That is love. That is your legacy. Your legacy is that none of your people will be alone. Not ever."

Never ever did I feel alone.  Not once.  So, in honor of Thanksgiving, being over 5 months post transplant and not having had an IVIG treatment in over 6 MONTHS...I am thankful.

Thank you...

...to Jesse...you've stuck by my side in the good and the bad.  You've never changed in your dedication to me and our family.  All of the treatment weeks, all of the sick...ugh.  You gave me this necklace on our 10 year anniversary to remind me of the hard and painful things we've experienced (the black ring), the good things too (the silver ring) and how all of it together makes a beautiful life.  Love you.

...to Randy & Gwen (my mom & dad)...you had my boys for 2 months!  Not once, did I worry about them.  Not once, was I concerned for their safety.  I knew that you were taking great care of them and I didn't need to worry.  You've sacrificed so much time in taking care of me and my family.  I now know, that's just what parents do for their kids. :)

...to Terry (Grammy)...a week of memories were made with sleepovers, frozen yogurt, pizza and pool time!  You also played a huge role in his life since he was 2 months old.  Grammy's house is like a second home to him.  You've been a great help over these years helping during treatment weeks to entertain and distract the boys from the crazy of it all.

...to Steve & Jeanne (Papa & Gigi)...you gave David a week of memories that he's still talking about.  From fishing to swimming to playgrounds and driving boats, he loved every minute.  You've supported us in every possible way these years.  A true blessing and gift to have you on our team.  

...to Jason (and Susan)...you got the second hardest trip bro.  Mobilization to harvest was no easy task but you willingly signed up for the adventure so Jesse could be home with the boys.  You cooked, cleaned, picked up prescriptions, grocery shopped, helped me walk, dealt with all the luggage, massaged my back, slept on a lumpy pull out couch for 2 weeks in subzero temperatures, woke up super early to warm up my shots and then stuck me in the stomach with 14 needles (a time I know I will never forget)...and you did it all while trying to make me smile (well, maybe not at 6:30 in the morning).  I'm glad you were with me. :)

...to Caleb (and Melody)...you made our video and captured what our CIDP, IVIG life looked like.  You portrayed how desperate we were for HSCT and in turn helped others understand why we were asking for funds.  You coached me, helped me through the words (one sentence at a time), recorded over 3 days and edited for so many hours until it was just right.  You were also a support for the boys and mom & dad.  You played with the kids and made sure they knew they were loved while I was gone.

...to Jonathan (and Noelle)...you got the easier trip. ;). Pre-testing week would have been a lot different if you hadn't joined me in Chicago.  You got to meet Dr. Burt and do all of the walking with me limping along beside you.  You held my things while I went from one appointment to another and never complained.  You made sure I had water and snacks to get through the long days (and the 34 vial blood draw).  You gave up precious time with your family to be with me and help me.

...to Jenn (my BFF, my Sister from another Mister)...So many things to thank you for.  You kept us fed for the first few weeks home.  Those meals were so perfect for what I needed.  My energy was still gone and having meals ready to go let me "contribute" to the family without my body giving up.  You've been with me every step of the way on this crazy life journey.  The next post is for you too. ;)

...to my girlfriends (you know who you are)...I got through the darkest time of my life because I had true friends. Thank you for skipping the small talk. Thank you for every single time you made me laugh.  Thank you for not being perfect, for having kids who throw fits and won’t sleep. Thank you for not cleaning up too much before I come over.  I often feel like you girls, my village, my tribe, are the reward in a divine deal. So yeah, I had to live through some sh**, but in return I get to have each one of you in my life. You’re my helpers and my guardian angels. You’re the ones who held my hands and cheered me on while I walked barefoot over the hot coals and are still here to party with me on the other side too. Because when one of us makes it, we all make it.

...to my prayer supporters, your prayers were and are so precious to us.  Knowing that everything was being lifted up, let me focus and be in the moment.  

...to our financial supporters: 

You helped get us to Chicago!  

You helped us stay in our home! 

You helped me be able to take the much needed time off of work, to recover.  I will forever be humbled by your generosity.

...to our entire team. Thank You.  

Thank you for coming together and investing in my health.  This is the best I've felt in years!  Thanksgiving indeed.

4 MONTHS!!!! (Day +122)

It seems like yesterday and also like a year ago all at the same time.  I am still so grateful for this awesome chance at life again.

How Am I Doing?

Overall, GREAT!  I have not had any (ANY) CIDP medications since before transplant.  That in and of itself is something I never thought I'd be able to say.  

Some symptoms from the disease are still there, mostly numbness, pain and fatigue, but nothing like it used to be.

On the 1st of this month, Jesse and I celebrated our 10th Wedding Anniversary  and our 18th year of knowing each other.

We went back to the same place we honeymooned, 10 years ago!  The owners donated two nights to our fundraiser and they ended up in our lap. Thanks Harmans! 

We had a great time remembering, being silent, and talking about our future (something we had stopped doing).  We are dreaming again.  We are living life in new ways.  

How's Your Toe?

My toe saga continues.  I was seeing the wound care specialists once a week for over a month.  This past week he looked at it, shook his head, and said "damn toe!"  Exactly.  It's healing, finally, just very slowly.  I've "graduated" to seeing him every two weeks. Yay! One less thing in my calendar!

Are You Working?

I never really stopped.  

Yes. That is a photo of me, in the hospital, getting chemo, during transplant, working.  Totally my choice, but still crazy.  Owning my own business has been great.  Especially since I got sick 4 years ago.  I'm sure if I had been working for someone else, they would have let me go due to the constant absences my treatments caused. 

My clients are happy that I'm back as we are starting to get everything caught up.  The joys of bookkeeping, it never stops, it must always be counted and will always be there.

What are some physical improvements?

I can open some jars.

I can pick up a grain of rice off of the floor. 

I can walk and walk and walk!

I can do wall push ups.

I can hold 5 lb weights.

I can do wall squats.

I can run in an emergency (like when your two year old does a face plant on the sidewalk).

What are some things that are still difficult?

Fatigue is still a thing.  Probably will be for awhile.  Keeping up (or trying to keep up) with the boys, is definitely exhausting.  

Pain in my legs and feet continues to be an issue.

Things that WOW me:

Prior to HSCT, I would wake up in the morning, and we would do everything we needed to do upstairs.  I'd gather everything we needed for the day before we went downstairs.  I only had so many stair trips in me for one day (typically 3 or less).  Now, I don't even think about it.  I still try to get as much done upstairs before going down, just because it makes sense, but I'm no longer concerned with not being able to climb them.  I just do it when I need to.

Increased feeling in my hands.  I had no idea how much I couldn't feel.  I'm still amazed at the smoothness of my little ones faces or the roughness of their little hairy legs.  Boys are hairy. Lol

I'm still pinching myself that this is real.  How could this be real?!  It's awesome and I'm so thankful for the chance to be healed.  Excitedly paving the way for others to be saved from these horrible autoimmune diseases.

Van, Rain, Toe

After 56 days in the repair shop, driving a rental, and $5,000 worth of damage, I finally got my van back!  I missed my mom mobile!  

Back story:

Soon after we got home from Chicago, I went to drop off a letter at the drive through mailbox (to get some fresh air and some freedom), while I was out, a woman struck my van...it wasn't driveable.  I had to be taken home in the police car (gross), with my kids car seats (that we replaced).

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Today, of course, there was a down pour and flash flood warning when I got to the body shop.

So, here I am, stuck in my rental car, contemplating how I'm going to get through the river that is now flowing down the street, without getting my toe wet.  At this point, I have taken everything extra out of the rental car so I don't have to move over car seats and strollers and all other baby/kid items.  I then realize, I have medical gloves in my purse for emergencies!  I grab one out of its ziplock bag, rip of the thumb, and stretch it out over my very bandaged toe. It barely fit.

I prepare for escape, glasses in purse, keys in purse, water bottle, jacket...open door, GO!  I have never, walked through so much water on a road.  It was so high I almost lost my flip flops.  Thankfully, my toe stayed dry, and I made it to the door. I got my van pulled up for me, gave back the rental, and I was on my merry way.

Next stop, wound care center.  This toe has been a pain in the butt (really pain in my toe) for 7 months!  We are ready to be rid of this wound.  The team there is great.  Very positive, happy bunch...reminds me a lot of Northwestern staff.  

I saw the Dr. and he wanted a biopsy from my toe to rule out any cancer.  It's not likely, so I'm not too worried.  He's just being ultra conservative due to my history and wants to be thorough.  I was like a celebrity there!  Everyone, and I mean everyone, wanted to ask me questions about HSCT.  It was great to see a group so excited about healing others, they are in that business too.  

So, after an hour and a half of filling out health histories, medications, questionnaires, examinations and procedures, I now have an open wound again.  It hurts.  I have to keep it covered always until it heals.  

One of the medicines they have prescribed me is a piece of mesh like matter, made from a sheeps stomach!  

Note:

Products from animals that I've had in or on my body in the past 3 months:

-Rabbit (rATG during transplant)

-Sheep (Wound healing medicine for toe)

-????? (What animal is next?)

Thankful for science and my Dr.'s.  A shout out to my podiatrist.  If you live in the Maryland area and need a podiatrist, let me know!  He's answered texts from me after hours, on weekends, made time for me in his already full day to help me and my poor toe.  He's truly been great and I'm thankful to have him on my medical team. :)

So, we are on the road to recovery (again) I hope that this wound will soon be a distant memory.  I'm itching to start walking and biking and hiking and doing just about anything outdoors!  Heal toe!