"These are a few of my favorite things!"

Favorite Things: a few things that I absolutely loved and used all the time.  I packed a ton of stuff that I barely used.

My Husband

I realize that some people have to do this alone.  If you don't have to, don't.  Let those around you help.  I could have gotten through the transplant without him.  The nurses, cleaning staff, Dr's are great and very caring.  But, when I feel like crap, for days on end, I want him.  Even if he just holds my hand or puts ice chips in my mouth, he calms me.  He was almost always with me if I needed anything (and I was stuck in bed a lot), he cleaned the room, helped me get up to go to the bathroom, get dressed, you name it. So I encourage you, ask those people in your life who can help calm you if they'd be willing to come on the HSCT journey!

Now to the goods!

Velcro Tank (built in bra) Tops

I got the tank tops from Wal-Mart (they were the cheapest price for built in bra tanks).  Then my awesome mom, refashioned them with Velcro so I could easily get myself dressed everyday.  This and my sweatpants, was my uniform for the most part and it was wonderful.  I didn't have to wait for a nurse to unhook or stop my medicine so I could get dressed.

Prayer Shawl

My friends mother made this for me (thank you Carol!) I had no idea how much I would use this.  I used it every day.  It was light, and yet gave me enough cover so I wasn't cold.  A true blessing that I'm excited to loan to a fellow HSCTer!  :)

Toddler Pillow

This was great to have for resting my arms or just holding something.  The hospital pillows make too much noise and are very bulky.  This was perfect!  I missed my kids and this let me snuggle something or prop my head up slightly.

http://www.amazon.com/gp/product/B009JV34RC?psc=1&redirect=true&ref_=od_aui_detailpages00

Sleep Mask

Essential for day time naps and middle of the night vitals checks and lab draws.

http://www.amazon.com/gp/product/B00L4NJFEE?psc=1&redirect=true&ref_=oh_aui_detailpage_o02_s03

Diffuser (and essential oils)

Saved me from getting sick so many times!  Our room never smelled gross or "hospital" like.  Instead, it smelled fresh and calm.  The nurses loved it too. :)

http://www.amazon.com/gp/product/B00LPAMP3O?psc=1&redirect=true&ref_=od_aui_detailpages03

The Abbey Cap

This was a great piece. It was very airy and let my head breathe.  It's also super cute and comes in all kinds of colors.

http://www.amazon.com/gp/product/B00BXUL4I8?psc=1&redirect=true&ref_=oh_aui_detailpage_o04_s00

Sleep Cap

This was the most comfortable sleep cap I found.  Very soft.  No pokey seams.

http://www.amazon.com/gp/product/B00LW06TAW?psc=1&redirect=true&ref_=oh_aui_detailpage_o03_s00

Air Purifier

Cleaned the hotel room air during mobilization.  Now it's in our bedroom working it's magic post transplant.

http://www.amazon.com/gp/product/B000G2BESO?psc=1&redirect=true&ref_=oh_aui_detailpage_o03_s05

Shower Sandal

Kept me from slipping at the hospital or picking up a strange foot disease/fungus.

http://www.amazon.com/gp/product/B00HQ1KLJG?psc=1&redirect=true&ref_=oh_aui_detailpage_o05_s00

Lysol

This Lysol has a special less smelly smell than the regular Lysol.

http://www.amazon.com/gp/product/B000U7WCT0?psc=1&redirect=true&ref_=oh_aui_detailpage_o09_s00

Masks

If you're flying any distance, these were great.  They breathe well, don't touch your mouth, and don't pinch.  A good mask for a long and uncomfortable travel day.

http://www.amazon.com/gp/product/B001ESZ4SA?psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

Luggage Scale

Also for those flying...most airlines have a weight limit per piece of luggage.  This ensured we weren't unpacking and re packing on the floor of the airport when I really just needed to sit down.

http://www.amazon.com/gp/product/B00A8SXGKA?psc=1&redirect=true&ref_=oh_aui_detailpage_o05_s00

Husbands Favorite Things:

Shower Caddy:

There are facilities for family to use at the hospital but you've got to take all your stuff with you.  A caddy was helpful for him to grab and go.

http://www.amazon.com/gp/product/B00NJ648SW?psc=1&redirect=true&ref_=oh_aui_detailpage_o04_s00

Crocs

Great for the shower.

http://www.amazon.com/gp/product/B00LWS1IVY?psc=1&redirect=true&ref_=oh_aui_detailpage_o05_s00

Sleeping Bag

My honey brought a sleeping bag.  He planned on staying in the hospital with me the entire time and wanted to be comfortable.  He's very glad he brought it as it gave him a more secure feeling like he wasn't going to roll off the pull out couch.

Damn Toe!

I managed to go this long without anything major.  Tonight, I had to have a procedure done on my toe to remove some tissue as it had started to become infected.

(It looks horrible because he cauterized the edges a few days ago with silver nitrate).  This was my toe last night.  This morning it was even worse.

I had my toenail removed back in the Winter to prepare for transplant.  It never healed all the way and in the past few days, became increasingly angry.  We did an X-ray to rule out a possible bone infection, thankfully, no bone infection.

So, now my toe is bandaged up and I'm on bed rest.  I'm also taking 2 different antibiotics to prevent any chance of infection.  With a brand new immune system, I'm susceptible to everything.  

I hope the pain is bearable over the next few days as the numbing wears off.

The good news, when he was numbing my toe (6 needles) it hurt sooooooo bad!  I know it's confusing, why is that good news?  It means the nerves are healing in my toes!!!!!  I felt more in those 6 shots than I did back in January!  YAY!!!!!  

Now heal toe! (Hahaha...heal...toe). ;)

Day +60 (Month 2)

How can it already be two months?!  

People really want to know, "what improvements are you noticing?"

-the electrified feeling...gone

-the constant nerve pain...gone

-the weakness in my legs...gone

-the crippling fatigue...not gone, but not nearly like it was.

-the tingling in my legs, feet and hands...gone

-the all over body charlie horses...gone

-the eye spasms/twitches...gone

-the difficulty swallowing...gone

-the intestinal/digestive issues...gone

-the uncontrollable muscle spasms...gone

Things I CAN DO:

-grasp things with my hands, like open jars.

-balance for a moment on one leg.

-balance on the balls of my feet!!!

-do laundry, play with the boys, prepare meals, go on a walk, do dishes (in one day, all without feeling like collapsing).

New things I'm dealing with:

-Hot Flashes-This is a common side effect from the chemo.  It should dissipate as the months go on.  I could also be experiencing peri-menopause symptoms.  Only time will tell.

-Muscle Pain-I started physical therapy 3 weeks ago.  It has been great but my body is definitely yelling at me.  Muscles that haven't been used in over 4 years are being awakened again through simple stretches, strengthening movements and therabands.  I have yet to touch one piece of gym equipment.  My body is so messed up, I likely won't use any equipment until January.

-Nerve Pain-This is an old issue, but also new as it is a different kind of pain.  It's not as sharp as the previous nerve pain.  This is more of an ache.  Here's hoping for healing nerves.

-Hair-My hair is officially growing back!  I was bald one day and then the next, it was like Springtime on my head.

I 'officially' went back to work today with my clients.  Running my own business is great but there is literally never any down time.  Thankfully, my clients have been wonderful and patient with me going through this process.  I've been able to get work done from home to limit my exposure to germs.  So far, I've been able to avoid going to the ER, hoping this trend continues.

My labs each week have been great and the Chicago team is very pleased with my numbers.  My WBC is at 6.4. :)

Home Life:

Life at home is still getting figured out.  We are learning how to parent again.  We realized that our home prior to HSCT, was a very stressful place.  The constant pressure to get work done just in time for the next treatment was too much stress on me and therefore too much stress on our kids.  We are recalibrating how we parent, trying to have more fun!

Went to a dear friends wedding and looked awesome with my hubs. 

We are still on cloud 9 as it pertains to my CIDP.  Every few days I discover something I no longer experience that I used to or realize something I can do that I couldn't before.  I purchased this necklace, to commemorate my "new" birthday. 

Encouragement:

I realize that some people do not get to experience such a quick turn around on recovery.  I still have a ways to go to get back to a healthy pre-CIDP me.  Please don't be discouraged if your path looks different than mine.  I was doing "alright" on IVIG and it had given my body a chance to partially heal from the previous year(s) damage.  Going into the hospital strong, definitely has helped here at the end...as they say, "the sooner, the better."

The Old Self:

I've had some time to think over the past 2 months about who I was and who I've become.  I came across this on a blog I read...I can't recall the author but it struck such a chord with me, that I copied and pasted it into my notes.

"Kara and I drove to the doctor the other day, really the only outing that is possible these past weeks. As we left our house, some of Kara’s girlfriends were talking by the fireplace. They were talking about Kara and the impact she has on them. Kara caught one saying "Kara always asks about my marriage." As we left the house, I could see Kara sinking into sadness. She mentioned the conversation we just overheard which caused her to remember who she used to be. She felt sad that she didn't have the energy to engage those conversations. I think she felt separate from her past investment in people; that her new normal had been ripped out of her old comforts and joy. That there was no congruency between the two.

As we drove, I reminded her of the heritage that she is leaving. All of our moments are linked together, all of our time with people, all of our love. Our investment is never wasted. It may seem inconvenient at the time but to see how God uses our past conversations to shape a future and in that we are each leaving a heritage."

I am thankful to have led a group of women when they were in high school (about 8 years ago).  While I miss being able to enjoy their company now, I know that my time with them wasn't wasted.  Each of them, in the last few months has sent me a message of encouragement and thankfulness for our time together, for showing them strength in the midst of a debilitating circumstance.  Just when I thought I wasn't being useful, surprise!  

"...we are each leaving a heritage", what will yours be?