Sunday, July 9, 2017

Day ~594: This roller coaster is insane!

My last post was made on Feb 10th. At the time, things were going great and I was feeling back to my old self. Spin class, long hikes, meeting friends at the gym, road trips and work travel. Two days after that last post (Feb 12th) something changed. I was preparing to leave on a business trip on Feb 15-16th when I began to experience hip pain. Assuming I had worn out my hip flexor at the gym, proceeded with stretches every day and a few chiro visits. While in Atlanta on my business trip, the pain was so bad that I almost drove myself to a local ER.

I got home late Thursday evening, and Friday morning at 5 am I headed to the ER. I was diagnosed with severe sciatica and sent home with pain meds. To make a long story short; there were more visits to the ER. visits with a spine surgeon and my neuro, followed by a rash on my foot/ calve a week later. The diagnosis was shingles.

An MRI showed a severely inflamed nerve root (a lumbar nerve that would cause sciatica) and it was the same nerve path as the shingles rash. Shingles had attacked my spine. I couldn't walk for two weeks. Over the course of several months the pain slowly got better but I lost a lot of muscle and strength. Physical therapy was a huge help. Also patience and gabapentin got me though the attack - even thought I didn't appreciate the brain fog. I learned about holistic treatments for shingles: l-lysine is an amino acid that stops the duplication of viruses and that shingles doesn't like Thyme or blueberries. So l-lysine, thyme tea and blueberries were a regular part of my diet.

I also had to restart IVIG, in the interim, to offset the CIDP flareup that shingles caused. HSCT stopped the chronic behavior of my CIDP - but like any of the diseases that HSCT treats (MS, Lupus, CIDP) - all the diseases post-transplant have the tendency for a flare up when we have an illness or stress. It's still 100% better than being chronically affected.

As of June 26th I am much better. Just as my neuro day your body will act like nothing happened. I still get shocks of pain through my leg from time to time - but the neuro said post-herpatic neuralgia (post-shingle nerve pain) can last up to a year. Shingles sends a neurotoxin out to attack nerves and sometimes it takes your body some time to eradicate the neurotoxin.

Through all this I sold my house in June and have moved in with my beau. Our plans to build a life together have never halted. That man has stood by me through everything since diagnosis and never once wavered or shown any qualms about this journey. Thankful beyond measure that I found him!

The experience makes we grateful (again and again) for the health I was given from HSCT.  I am back at the gym and able to walk normally (in speed and without the limp). I have put the cane back in the closet (for the third time) and hope to not see if for a long while.

I did hear that several of Dr Burt's patients contracted singles recently, so he is expanding the length of time his patients take the post-transplant anti-viral med. At the time, I only had to take it for a year (through Aug 2016), but now patients will take it for 2 years or more. He is constantly tweaking his program for the better of his patients.

Sending love and thanks to my friends who have helped keep my spirits up during yet another FUN filled adventure. My love to my fellow patients who also contracted shingles. Hope you are all on the mend!

Now I am preparing for my two year check up in Chicago this August. Cannot believe how fast 2 years has flown by! Another update will come to share what Dr Burt & Dr Allen have to stay about my health status!

Be well!

Friday, February 10, 2017

Day ~445: The 18 month update!!

It is hard to believe I have been back to work for 13 months. Recovery has lasted the full 18 months and in my opinion it continues.

My oncologist officially released me from her care in January 2017. She is so happy I did this, I was her first autoimmune patient that had a bone marrow treatment. She has been watching bone marrow transplants saved the lives of cancer patients for over a decade.

My neurologist, was never told about my decision to do this treatment, until six months after I did it. Just had my 17 month check up with him. He is blown away and in his own words: "is convinced that the treatment works".

Been cane free for a while now, can't say I miss that life. I owe so much gratitude to my physical therapist, occupational therapist and especially my personal trainer at the gym. Even when I was released from therapy my trainer really helped me work on balance, gait training, increasing my strength and mostly increasing my confidence in myself. Erik! I know you're reading this. Thank you.

It's been nice to get back to work and use my brain in a creative and useful way. Things are crazy busy as usual, but it beats sitting at home thinking about limitations and what I wish I could be doing.

There is a lot of credit due to my tribe. Without my friends and family, who have stood by my side and been the best support system on planet Earth, I don't know that I would have recovered so well.

My beau Chad has also been there from the beginning: diagnosis day. He never wavered, never showed stress, and never had any doubts that I would get better. But even if I hadn't improved; I know he would still be by my side.

The stomach issues that kept sending me to the ER (GERD attacks) seem to have finally subsided. I did catch what I thought was a cold back in December, and it turned out to be walking pneumonia. That took several weeks to recover from and was not fun at all. I do not recommend catching it- lol.

I now enjoy long hikes with my beau, we have some great reservoirs in the area that we get to spend a few hours exploring. Getting lots of friend time at the gym between steam rooms and spin classes.

While I am not 100%, I am also accepting of the fact that I may never be. But I'm 90% better than I was when I had a cane, infusions every two weeks, and fatigue that literally had me printing disability paperwork.

I continue to be an administrator for several support groups on Facebook and elsewhere. Paying it forward is something that I enjoy because I am so grateful to the mentors that I had through the process.

My favorite non-transplant group is my GBS/CIDP exercisers group. We encourage them with coping skills, motivate them to keep moving and building their strength, and help connect them with doctors that specialize in these diseases. This group brings a lot of joy to my heart, laughter to my soul.

My gratitude is through the roof. I count my blessings and wanted to thank all of you for your love and support and being the amazing people that I choose to have in my life.


Tuesday, August 9, 2016

Day 365: One crazy (and wonderful) year

Aug 3rd was my 1 year post transplant birthday. I spent it in Chicago for my one year checkup and have been reflecting on my improvements since March 2015 when I came for evaluation.

I didn't start to see promising changes until 8.5 months post. At my 6 month, while some things had improved, I didnt feel they were that significant. Going back to work on month 5 was very hard. I was lucky to have had a very supportive management team that helped me ramp up my time in office and projects.

Flash forward to today. As I sat by a window last week waiting for Dr. Burt's nurse to call my name - I realized how far I have come: No wheelchair at airport, my cane is at home, no more IVIG infusions, down to ONE medication (that I should be off in a few months), no longer limping, walked over a mile to dinner last night, took 11.5k steps yesterday, more energy, more joy....

miles of myelin repairing

We (HSCT patients) all came in with different levels of disease or damage and we all heal at a different pace. Some (shout out Matt) build decks at month +5......some are starting to feel better at month +21. This is my path and I am ok with it. It can always be worse. And more than anything, I am grateful to be walking unassisted.

I still have challenges with: fatigue, fine motor skills in hands, numb hands and feet (I cannot operate a zipper without looking), occasional balance issue and strength. However the improvements outweigh the challenges.

this heart is overwhelmed with gratitude

Enough cannot be said about my support at home and abroad. As I may not post for a while I have to dedicate so much of my success to them.  I never used to be much of a crier, but I am emotional writing this.

My friends and family listened, never doubted my illness or ability. They offered to help when it was needed and to back off just the same. In the darkest of days they picked me up of the floor after a fall and subsequent breakdown. They walked the 0.25 mi with me until it became 1.0+ miles, took me to appointments, did test drives with me, brought me soup, lent me their ears, brought a smile and giggles.

They sent messages, cards, care packages (a giant flask and great books were in the mix), left voicemails and sent emails daily, weekly, monthly - from near or far just to let me know I was on their mind - while they were busy with newborns/ toddlers, ill family members, work, vacations, family events, deaths in the family or their own medical issues.

Current friendships grew deeper, new awesome friendships were born. They, to this day, are my biggest cheerleaders. I am blessed with the love from this group of amazing souls. They need not be named, because they know who they are.

I love you endlessly. My cup overfloweth. I hope to return the favor in any capacity some day.

Had a blast in Chicago meeting up with fellow patients. We visited inpatients at the hospital - it was Matt (+6mo), me (+1yr) and Kasia (+2yr). Kasia was one of my mentors and I tried to do the same for Matt; but in the end Matt inspired the hell out of me (he's the one who built a deck at +5 months). Below we are in order second to fourth and on the far left is a patient that was still inpatient. She was discharged the next day.

my view when I was inpatient

There was time with Bree - my hairstylist/friend who I have been with since the uber short cut a year ago, two weeks prior to the shave off. We as always had a blast and I got to bring goodies for the baby girl she is due to have this October.
baby bump  photo bomb

Kasia, her family and I caught the Wed night fireworks

A work colleague/friend of mine left this for me while I was in Chicago - she is now on maternity leave so I didn't even get to hug her and say thank you. She has been photographing my hair growth since month +5 when I got back to work. People donating headbands and bows etc. for me to wear and I "modeled" them for her a few days a week. Well she put them in a beautiful keepsake box. *Sniff!

Chicago will always have a special place in my heart and I will gladly contribute to their economy. Wouldn't mind a place here for the Spring/Fall- ya know, when I become a millionaire. Don't think I'm not working on it. Lake property is calling my name

In September I head to Texas for the CIDP/GBS Foundation summit where Dr. Burt will speak about the treatment. I am looking forward to meeting many members of some of the support groups I admin or attend online. Plus - nothing like spreading the word!

Added-bonus- there is a wedding in Chad's family that same weekend   - guess who is meeting the family...  :)

Here are some other pics of the visit:

I had no idea this was in Chicago - (hint;  Al Bundy)

Planetarium is a must - I'm a science nerd!

That is all for now folks! Thanks for following my journey.
Wishing you love, laughter and wellness!

Tuesday, May 3, 2016

Day +272: It's my 9 month birFday!!!

What a great few weeks its been. My beloved pooch turned 5 years old April 12th. My physical body turned 40 on April 18th. My immune system turned 9 months old today, May 3rd.

Duke has been enjoying day camp, a couple days a week. They take such great shots of him. He cant wait to get out of the car when we arrive, and passes out in the car on the way home.

It feels good to use the brain again! I continue to plug along at work. I really like my job and my new projects. They continue to be understanding about my work restrictions. I repay the favor by being my typical workhorse self.  I've been "promoted" by the docs to three days a week in the office and two days at home. It's been great reconnecting with my colleagues.

We had our annual Senior Leadership meeting and I got to catch up with colleagues that came from across the country. I also got to enjoy this beautiful view. Not complaining,
Alcatraz, Coit Tower and the bay

We are having some fun at the office taking silly pictures of me with headbands and watching my hair grow. Its coming in, although it feels slow....but length is there! I've come a long way - baldy picture alert!

twins much? the baby bro
week of Aug 15

My AZ girl - Angie (March)

I started attending a spin class once a week. I am going to try a second day this week. I attempted a
half spin/half weight class and strained a shoulder muscle, so that may need to wait. My average step count on my fit bit is slowing rising, which shows that my stamina is increasing. I still attempt to swim, but the pool has been a bit crowded for my taste. 5 people and 4 lanes is too much for me.

I am convinced that my homeopathic treatment (MacaRoot) is to thank. Its easier to be motivated to workout hard when you aren't having a hot flashes and sweat fits throughout the day. This is also helping me sleep through the night FINALLY. I had forgotten what it felt like to be well rested.

My girlfriends threw me a dinner party for my birthday. It was quite fun! A great way to celebrate and be thankful for another year enjoying life and laughing my way through it. Thanks to my friends for planning and spending the evening with me. I had a lot of laughs!

40 flowers from my roomie

Friends for a LONG time

candy cigarette

mi amor

Birthday Trip
The beau took me to Cambria, CA to celebrate the big four-oh. It is a coastal town (known for its proximity to Hearst Castle). We ended up there last minute after weather reports showed that Mendocino was rained in. What an incredibly beautiful area. We met a  local artist: Rick of Rick Gallery has some great work, the owner of Black Hand winery (we got some bottles), and we visited the 300 yr old Oak in the open space that the city acquired. We even attended a wildflower exhibit, where volunteers collected hundreds of local wild flowers and plants (some poisonous). We learned where they grow and if they are edible or medicinal.

Morro Bay

PT/OT are reduced to once a month. I am beginning a PT swim program that has a treadmill in a pool. I am still having issues with my gait, so hopefully gravity free walking will help me lose the limp.

Still have the upper GI issue unfortunately. It has been four months since my last attack, so my hope was that it was settled. But the weekend brought another attack, so we just wait for the day it never returns. The doctors don't have many options. I keep my medication on me 24/7 so I have it when I need it.

Otherwise all healing is slow but steady. I'm pleased. Still impatient, but pleased!

Follow Ups
Chicago called and scheduled my one year follow up this fall. Looking forward to the report.

Then I'm off to the International GBS/CIDP Symposium to hear Dr. Burt spread the word!!! Proud of our foundation for recognizing a non-pill form alternative for auto immune issues. Take that Bayer!

He just finished speaking at the Vatican spreading the same word. Its a BIG deal.

Lots to be grateful for!!!!

Monday, March 21, 2016

Day 229: Updates from the Windy City

Sorry I am behind:

I can remember following other people's blogs, and being so bummed when they didn't send an update regularly.  And I remember them talking about getting so busy with life once they felt better.  Now I know exactly what they mean.  Sorry, I've been busy with life.  It's pretty awesome to be able to say that.

Chicago bound:
March 3rd was my 7-month immune system birthday.

I was back in Chicago for my (late) 6 month follow up the first week of March (about day +211).
Got some great shots from the plane....and an idea of how chilly it is in the sky.

Forgive the sideways photos- I have resaved them twice right side up,
but Blogger is having none of it~

approaching Chicago @ nigt

-54F? Brrrr!

Lake Tahoe from 39k feet

Its the same awesome city it was last summer, only with ice on the ground

Visiting with the docs:
I met with Dr Burt & Paula first, who had this to say:

"You are doing better than you think you are and what you describe. Honestly you are in the 'best case' side of things. Keep it up, we hope to see even more improvement in August at your one year"

Dr. Allen did the EMG Amd Nerve Conduction tests. Heres the thing...they hurt when I was at peak now it really freakin hurts.

I am still waiting for Dr. Allen's formal write up of results, but he said that at rough glance he saw "some nerve improvement and some nerve worsening" so we will see what that even means.

My CA Neuro:
Before I went to Chicago, I met with my Neuro in CA. He confirmed that every 3 months since transplant he has seen "tiny improvements", but informed me that since nerves heal in tiny increments, I am right on track. He also did the vibration and pin prick tests. Long story short: extra sensation brewing. (Ouch!!) - this is a good thing.

While in Chicago I went to see my hair dresser Bree. She used to live in the BayArea and later moved to Chicago. I met here during mobilization when I cut my hair short in preparation for it to fall out. I had to go back. We had some fun shaping my fro, pitting in very subtle clolor and playing around with some punk rock styles.

I have yet to repeat this perfection of "punkrock" but I keep trying.

Advice for future applicants:
For those of you planning to come to Chicago for transplants I cannot recommend this salon enough. Look up HAIR LOFT on West Huron Street. Make your appointment won't regret it. Bree Spaethe is the best....but I am sure everyone is great.

A good laugh:
My Chicago funny- I had reserved transportation to take be back to the airport and in the email confirmation my name was spelled like so:

Status Check:
Apr 4th is my 8 month birthday. I am starting to have more good days than bad. Once Chicago lifted the pool restriction, I was at the gym swimming. It wipes me out with just 30 minutes, but I swear it makes a difference.

Apr. 4th will be just about 3 months since I have been back to work. I think the "brain joy" from working aids in healing too. My wonderful manager announced her retirement (cancels out brain joy) - so there is mild stress about the change in regime. She has been so kind and accommodating, but I am truly happy for her. Good souls like her are hard to come by so she deserves all the R&R she wants. For the first time in my career I am interested in leadership. Not management, but true leadership; thanks to mentors like her,

Duke has been to "camp" a few days a week so he can stay occupied. This who experience was hard on him. But camp keeps him active and socialized until I can actual take him on 2 mile hikes again

morning bike ride

hunting squirrels

lining up for play yard entrance

Who knows what I will be reporting in August, but I am hoping its a little something like this: "sorry this blog is late, went for a jog with the dog and forgot". That is all any of us hopes for with HSCT. A little bit of our life back without constantly wondering how much more attack our bodies will experience in the next year. Its clear that progression has we wait to see how much my body wants to heal

My 40th birthday is approaching (April) and I was thinking about how grateful I am to have a 40th. If I were still healthy I'd likely be complaining about how old I am getting. But my new motto is "bring it universe: you have NO idea who you are messing with".

Until next time.........

Monday, January 25, 2016

Day +174: Back into the groove

Days home: 165

Fast approaching is my 6 month immune sytem birthday (Feb. 3rd).

Back to Work
I have been back to work since January 8th, this is my third week back. My brain is beyond happy to be of good use again. Physically it is quite a challenge. My back and neck are taking the brunt of the adjustment, which is why I see both a massuese and a chiroprator once a week.

                                                       @ the office

My employer has been fantastic, letting me put in any needs with our accomodations department. I have slowly been making adjustments to furniture, tools and software to help where I struggle. There is significant palsy in the one hand still, so typing cannot be maintained for hours at a time. Now I can have Dragon software to do it for me.

Medical Tests

The good news: my clots seem to have been dissolved. There is still considerable pain in my arm, whch is likely phlebitis from the clots. Thank you baby aspirin for the help.

The challenge: hormone balance (sorry gentleman readers). My testing shows deep into menopause, and with that comes hotflashes and night sweats like something out of a horror film. I am not a candidate for synthetic hormones due to my blot clot history. Now I am researching holistic or naturally occuring hormones through food or supplement. Turns out Estriol comes from wild yam root, as opposed to Estradiol we are given synthetically. And soy also provides many benefits for balance. Also been supplementing with Chaste Tree and Flaxseed.


Physically I get stronger month over month. I still pay heavily when I overdue it. For example, on Sunday I got over 10k steps. My legs and feet were in agony that night,  but the activity felt really good. I also picked back up the beloved Pilates class I hadn't attended since July. It's a mat class and a great way to get back to it. I hope to find a reformer class at some point to supplement. I ride my indoor bike at least 4 days a week, even though I max out at 15 min per ride. I have found online spin classes that I like. My elliptal machine is very stiff and difficult for me to get a long workout on, so I continue to work on that.

I caught my first post-transplant cold Dec 22 and am just now starting to feel it wean. It did brew a sinus infection for which I had to get meds. That was an unexpected urgent care visit last week. However, the anitbiotics worked quickly so I am glad I went. My new immune system has never encountered a virus before, so it will take it longer to fight them. The key is to watch for fevers and head to the ER if one pops up.

Follow Ups

I was postponing my 6 month checkup to Chicago due to them having a hard time getting back to me. Now they say they want to see me in March. Whether or not I go depends on them giving me enough notice (as a courtesy to myself and my employer). Their office staff is very busy due to the extensive media coverage over the last 6 months. The BBC just did a piece on HSCT. Unfortunately I emailed them in November and still have not received a date for my 6 month. I will have to email them next week to ensure that I get on the calendar in August for my 1 year. :)

Keep moving forward

I am starting to notice more of the pre-CIDP traits in me: craving physical activity, wanting to be out and about, my fighter spirit. I think the next year will be very telling as to how it all shakes out. My biggest wish is that I can comfortably be active and busy with little disability. Only time and the universe will tell.

I have a different perspecitve, on just about everything. I have taken on admin roles in a few support groups, and realize I like being a leader, motivator and peer. I like to show people what is possible, how to modify where they are limited. Plus, can I say, I have met some AMAZING humans on this journey. People that make me think "Steph get over yourself, you have it good". Every one of them has taught me something different.

I have a great leadership team at work and have friends in leadership roles that inspre me daily. Feeling very lucky to have the circle of friends and colleagues that I have. There is much to be learned through example. I'm looking forward to the challenge and the next chapter.

Until next time........