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).

---------

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!

Toe Update

After 2 weeks of craziness with this toe, I've had:

-Lots of pain

-5 office visits with my podiatrist 

-1 X-ray

-1 MRI

-3 different antibiotics 

-3 different pain meds (learned that I'm super sensitive post transplant and vomited with each one).

I've spoken with the Chicago team all throughout this and they wanted the MRI to rule out a bone infection.  Thankfully, that was this morning and the Radiologist on call confirmed that there was no infection!

Now we are treating the wound with a special calcium silver dressing.  I'll see the podiatrist on Tuesday then a wound care Dr. on Thursday.

I'm very thankful for my Dr.'s and how attentive they have been.  I look forward to getting this toe healed so I can do things with my family!

Damn toe! ;)

100 DAYS!!!

Not 100 days since my transplant, 100 days since my last IVIG!!!

While I've been healing from the transplant (and dealing with this stupid toe that just won't heal), I've had the added relief and time of not having the treatment that made me so sick, took weeks from my life, and took me from my family.

My boys had a weekend sleepover at my parents this past weekend so I could rest and begin the healing process again with my toe.  They had a great time and did wonderfully.  The one thing I am grateful for from the IVIG weeks, was the time my oldest got to spend away.  He's learned at an early age, that, as Daniel Tiger sings, "grown ups come back".  

I also was remembering my nurse Bello who came and administered my medicine for 8 hours for 3 days at a time.  It's kind of like saying goodbye to a friend you didn't expect to make along the way.

Thankful that at least for now, IVIG is becoming a more and more distant memory. 

"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?

Day +30 (1 MONTH)

It's been one month since I got my stem cells back.  One month since my CIDP was stopped.  One month since we watched fireworks over the lake.  One month since I felt so sick and longed for my children and their sweet hugs.  

Being home is a lot of work.  My body aches everyday like I've done an extensive workout at the gym.  

We are all still getting used to this "new" normal.  What it means for mommy to need to wash hands all the time and stay away from lots of people.

This was my view for the past week and a half.  Thanks to Jesses Aunt & Uncle for sharing their condo with us, we were able to be together at the beach, the boys got to enjoy the sand and waves and I was able to sit, listen and heal.  Such an awesome way to end our transplant journey.  My brother Caleb and his family joined us for a week.  He is also the one who made my video.  At the end of our time at the beach he said, that was the exclamation point to our transplant adventure, a good way to end it.

Next week, I see my PCP and will be talking about physical therapy and massage as I heal.  My muscles ache so much each day.  My nerves are trying to heal and this is very painful at times.

So far, my blood work has all been great! All in all, my recovery is going well.  It's lots of work.  I can still remember what the constant CIDP electrical surges felt like.  The fact that I can feel some on my fingers and feet, amazes me!

I've had to explain this sensation a few times now.  This is what I've come up with, imagine that you're wearing 5 pairs of socks and gloves.  You go to pick up your cup, but can't feel it, you feel the pressure of it as you squeeze it, but you can't feel the cup.  Now imagine that someone just took the socks and gloves off!  You can now feel the sensation of the cup.  After not feeling things for 4 years, being able to feel anything is amazing!!!

My last IVIG treatment was 53 days ago!!!  I can't even tell you how awesome this is for me and my family.  If you haven't seen my video, go here and watch (http://youtu.be/mxTq3tz1yeY). IVIG saved me in one aspect but it destroyed me in another.

This is hard work but so worth it to be able to live again. :)