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 numbness.....so 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.

Beautification:
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 ...you 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 stopped...now 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.........

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.

Physical

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........

Day +151: How has it been 5 months?

Days home: 142

Sunday Jan 3, 2016 is my 5 month immune systems post-transplant b-day. A special shout out to the transplant vets before me who said "patience is key - it will get better".....were they ever right.

EPIPHANY
I bought an upright bike to get better cardio than I got on my recumbent bike. I watch free spin class videos online and ride (to the best of my ability). Today I started crying 6 minutes into my ride. It was tears of pure gratitude. It dawned on me that 6 months ago I never would have been able to pedal intervals of standing up and sitting for 15 minutes straight. Don't get me wrong, the riders in the video are on level 406, and I'm on level 3...but still......I will get there. In my golden fitness days, I did spin, kickboxing, yoga and worked out 5-6 days a week. I plan to get back.

It just all hit me at once. I AM HEALING.

WHAT THE DOCS SAY
I met with my hematologist Wednesday. We both got emotional. I was her first bone marrow transplant patient for auto immune disease vs. cancer. She was skeptical, but hopeful. In her words: "I'm just overjoyed. Your blood work is perfect. You are fairing better than all my other transplant patients". She has been my educator, cheerleader and comforter. She knows this procedure and its symptoms so well, having monitored cancer patients for 10+ years. If she is happy,.... I'm ecstatic.

I also met with an amazing GI doc last week. After all the ER visits due to stomach spasms from hell (I have never had these before) he wants to find out the "why". Chicago officially diagnosed me with Celiac disease, and I have been lactose intolerant for a decade. He wants to take it a step further and test me for all dietary intolerance and get the official diagnosis(es) on paper. From there my entire diet will be modified (for good) and ensure that I never ingest things that make my tummy unhappy.

PT and OT are very happy with progress. In 2.5 months I surpassed their expectations. I did their "homework" every day. I pushed myself. I was competitive. I wanted to get better. It worked. They have all but discharged me. They want to see me 1-2 months after returning to work, to ensure I am doing ok.

*Bay area peeps: if you need or know someone who needs either a heamo or a GI doc, email me.


WORK
I head back to work Jan 8th. Yep, its a Friday. I figure I will be overwhelmed, physically and emotionally, and might need the weekend to recover. Plus the majority of the day will be spent on the phone with IT trying to recover email, voicemail, going through 6 months of emails ACK! LOL

For my colleagues: I am looking forward to more shenanigans, problem solving, innovation and laughs when I return. I love my job and my colleagues.  Let's see what 2016 has in store for m professionally........


HOW'S STEPH
- Caught my first post transplant cold Dec 22. Still recovering. Luckily I never developed any fever, and got lots of rest. My coughing fits caused me to throw out my neck. It required visits to a chiropractor, PT and a masseuse just to be able to hold my head up. Very painful. I so hope my work colleagues stay home when they are sick. I'm really not interested in another cold.

- Overall not much change from the last post. Stamina,  strength & mood are all better. I will continue to struggle with several issues mentioned before (hand palsy, hot flashes, numbness, weakness, fatigue). Two things I hope to recover are jumping and a quick sprint (like to dart and catch something). The nerve message to my calf muscles and lower legs have not healed enough to be able to do either. It's entertaining to watch me try. I think I am jumping, but I am just bouncing...feet still on the ground. Although I can do some interesting dance moves and hold my balance. LOL

- I can also stand with my feet together, close my eyes, and not step out for balance for 30 sec. This may sound ridiculous, but when I started PT, I couldn't stand with my feet together with my eyes open. My inner ear nerves that control balance are also improving.


- I no longer walk with a cane. I have an awesome foot brace (TurboMed Orthotics) for long walks and any incline....but I can now walk cane-free.

Only time will tell if  there will be more improvement. It's up to me to modify as though there will never be improvement, with the hopes that there will.


2016
Wishing you all a happy, healthy and prosperous year. Chase what brings you joy. Live to make great memories and spend time with people who make you smile. Be grateful for what you have, but fight for what you want. Not trying to be soap-boxy, just all my revelations of the 2015 calendar year.

Life is very very short. If you get to spend a second of that time healthy, then its up to you to be happy.

Day +137: Prepare to re-enter the Matrix

Days home: 128

The days and nights are quite colder, there are twinkle lights everywhere I turn. Holiday music plays at every gas station and photo cards with friendly faces are pouring in. What a season to be healthy and thankful.

If I told you that recovery was easy I would be lying. In all honesty it's been much harder than the transplant itself, and harder than even I expected. What I can tell you is that there is marked improvement from when I first got home, and that I am hopeful it will continue. We were never promised any improvement in symptom or ability, only the possibility of remission. We were told that improvements are a gift if we got it....so I say blessings often for more gifts.

The Matrix
The matrix is my pre-transplant life. A full time job that I love that consumed the majority of hours in my weeks......is on the horizon. On December 30th my hematologist will submit my return to work date for January. It will be an adjustment, but one I think is good for my brain. I was born to analyze, create, fix and collaborate. Socialization is a huge part of my personality as well. A girl can only organize so many closets and shelves of the home in a lifetime.

 

I missed my hair

Nerves have a mind of their own
There is still obvious damage in the right hand and weakness in the right leg and foot. Typing, writing, turning a key, holding a cup, grasping anything, picking up things, zippers, buttons, tying shoes.....all remain a challenge. I have tools to work around it in the event it never heals. I still struggle with patience with myself for being slow as molasses when using that hand. The  left side is about as close to normal as it will get.

Blood clots
The original one is still there, still causing me pain, and apparently not going anywhere. Even after an aspirin treatment he hasn't shrunk and has a new clot friend hanging out with him to keep him company. Not sure what is done in cases like this, but the Dr. is keeping an eye on it.

Tummy troubles
The stomach issues continue, with more bouts of the ER level stomach spasms. I see an upper GI doc later this month to discuss possible causes. There is concern that it could be my gallbladder, but I really need it not to be. That has the potential to require surgery.

Overall
Energy is up, stamina is up, attitude is up, appetite is up. Lots of positive changes that are a huge improvement over September. I am grateful that I had this time to heal and regroup.

Impacts from chemo can last up to 2 years.....joint pain, fatigue, muscle stiffness, decreased dexterity, hair loss (I'm losing the eyelashes and brows a second time as we speak), brain fog, short term memory loss, stomach issues, headaches....and on. It will be an adjustment to work through, especially once back at the office. My hope is that the time will go by faster and a year will be up before I know it, having been so busy with work and all.

Checkups
I will head back to Chicago in February or March for my six mo the follow up. This testing will determine if I am in remission. It's an exciting concept.....but will be great to have in writing!

Thank you
I have said it before but I truly mean it. I am so grateful for the support that has carried me through. Texts, cards, emails, calls, Skype chats, video messages.......so many smiles were created. You have no idea how dark some days were, and it was your kindness that brought a smile on those days. So THANK YOU for your kindness, thoughtfulness, humor, giving, charity, company, creativity.......from the bottom of my heart.

Happy Holidays & New Year
Whatever you celebrate, whomever you celebrate with and wherever you may be celebrating: have a wonderful Holiday Season and an even better (and safe)  New Year.   May 2016 be filled with love, laughter and good health for you and yours.

spoiler alert, if your hasn't come yet!

May your spirit be Merry & Bright,
Steph

Day +112: Neuro, Nerves & Stubborn Clots

Neuro

Since my last post I had a chance to meet with my Neurologist. I didn't inform him or even ask him his opinion of HSCT before I left, as most Neurologists are against it. The decision was mine and didn't want the bad blood with him. Well, he was amazingly supportive. In his own words "so effectively putting out the fire rather than splashing water on it once in a while?"

• The good news: my sensory and strength scores on the left hand and foot had improved. A few scores on the right improved, but not all of them. He is supporting me however he can from this point on.
• The less than good but not all bad news: the nerve damage in my right hand is severe. He said to prepare like it will never improve, with the hope that it will over time (we are talking years).

One thing he is helping with is weaning off the prednisone. After my last post I had a terribly rough week that landed me in the doctors office. Weaning off prednisone is a tricky task, and my latest dose reduction proved too large. Experienced a form of Adrenal Insufficiency. So, my neuro order low dose pills to help me wean slower to prevent that for happening again.

Some symptoms of Adrenal insufficiency (which can lead to Adrenal crisis): weakness, profound fatigue, dehydration, hypoglycemia, low blood pressure

Nerves

Occupational therapy is a wonderful gift for me. I didn't realize pre-transplant how much nerve damage there was in my hand. It is significant. The simplest tasks are very hard for me. Therapist and I are working on preparing me for work (writing, typing, holding objects, fine motor skills). I have a bunch of new tools from what I have learned from him.

Pen foam, to thicken pens so I can hold them

Zipper and button tools

Soft Thumb splints - now that my joints have healed some

Hand made tools for pressing my car key fob buttons and unhooking the seat belt

Special devices to open bottle caps

(similar to the tools that osteo/rheumatoid arthritis patients need)

Those that have come to visit are surprised, as it doesn't look like I am struggling at all. Once they watched closely they saw how slowly I do things. 

Therapist has me playing texture games in bowls of rice, digging for random objects (dice, paperclip, walnut) so that I can retrain my brain to understand the broken messages it gets from my hand. I cannot feel 85% of what I touch, but I can teach my brain anew language. How cool is that? It too will take time.

As long as this damage stays stable and doesn't get worse, I am hopeful. It is very limiting.

Stubborn Clots

While visiting the doctor, we did a second ultrasound of my arm with the blood clot. It has been bothering me again, but in a different spot. My hope was that my body started to break it down and it moved. Nope. Original gangster is still there, hasn't decreased in size, and now he has a new friend, clot gangster #2.

Enter baby aspirin regimen, and doubling up on my GI meds to prevent more ER visits from GI issues. Oh for joy!

Since I was able to wean off one of my medications (gabapentin), used for nerve pain, I will take my baby aspirin with a smile.

Roller coaster continues

Days remain unpredictable. I will have several good days, followed by one or many rough days. Nerve pain, joint pain and stiffness, muscle spasms, fatigue (crippling level) all seem to come and go as they please. The hot flashes (chemo-induced temporary menopause) are not fun either. One second I'm freezing and the next I'm bright red and fanning myself.

Still have not needed IVIG since July 16. What a positive and wonderful improvement. Currently trying to coordinate with Chicago on my 6 month follow up in February or March, depending on their schedule.

I still have pity-party days, I just choose not to stay in that place for long. On one particularly long day, my pop took me to the grocery store and I bought myself flowers to cheer myself up. Its a matter of how you choose to cope.

Getting back to it

As of today I'm scheduled to return to work in January. So, in the next 8 weeks, I am hopeful that some issues will resolve or lessen by then. Until then I am sticking with my daily rituals of stretching and exercise.

Dyed one of my (much too blonde) wigs a nice brunette.

brunette!

My new foot brace is helping me walk with more speed and better balance, as we try to wean me off the cane. It is comfortable because its outside the shoe. I am so thankful to Francois and his team: www.turbomedorthotics.com

Happy Thanksgiving

Be thankful this week. No matter what for. I know that I have a lot to be thankful for: Health, a roof over my head, a job, nice weather, amazing friends, my wonderful beau, kindness of a complete stranger today, my family...really been missing my brothers of late. 

So much goes on in the world that we can't control. Try to be thankful for the little things every day. I promise its good for the soul.

thankful for my fireplace when its 44F

Day +93: Follow the yellow brick road....to wellness

Days home: 82

Appointments Galore
The next several weeks are riddled with doctors appointments: PT, OT, Nuero, Chirop., Hematology, Plumonary, Primary. The day's fill up quickly. PT and OT at 2x per week.


Medical & Basic Math
My Neuro doesn't know I did this. So that appt. will either go really well, or really poorly. Best case is to get his support by showing up in remission. Considering the ($) thousands he loses when a patient is no longer being medicated and treated with $22k infusions, it depends on his priorities.

** Here's some math for the day: My transplant has paid for itself.  In 4 months.
I haven't had infusions since July 16. Every two weeks at $22k per infusion, cost savings = $176k
Cost of my transplant (~$165k). This is how we lower the cost of health care.

How I would LOVE to sit in a room with the executives of every major health coverage company (that has denied this treatment) to discuss simple math. Thank you Anthem BCBS of Ohio for "getting" it and being so wonderful to me!

Oops
Last week I had another visit to the ER for the same severe and sudden stomach issues I had back in August. This time the ER doc suggested that perhaps this isn't a virus at all, but upper GI spasms. Referral to GI doctor was recommended. Could be from chemo, antibiotics, no good flora in belly....so many things. For the last week, I've  been taking digestive enzymes to help break down food and eating yogurt to keep my stomach less stressed.

Therapy

PT and OT are going well, albeit challenging. OT is teaching me how to do things without thumbs (while we wait for joints to heal from continuous sprains). They made me joint splints to make sure they aren't moving. It's comical to watch me, surely. PT is teaching me to walk sans cane, for long distance, around objects/obstacles which terrifies me. The goal is to teach me to trust my balance and strength now that I am building strength back up.

Using mugs w/out thumbs

Thumb splints

Fatigue is still a huge issue for me. As is right foot strength and both basic and fine motor use of my right hand. There are signs that the nerves in my hand are improving, it's just a very slow process. If a tortoise married molasses....their baby would be the healing process. :)

 

In the morning, there is 20-30 minutes of stretching my right leg, hip, arm and hand.This is just to be able to walk, hold things, lift an arm, reach, bend etc.

My OT explained that when nerve damage is present in an appendage or limb, the bodies reaction is to flex it. It takes less energy to flex than to extend them straight against resistance. The tension on the right side (leg and hand) is indicative of nerve damage and a sign that it is much worse on that side.

This is my hand at rest. Ring and pinky fingers are always in flexion. Most damage and weakness is in those two. When I got home, this hand would flex tightly into a fist and I would have to peel my fingers back and stretch them to stay straight. So this is progress!

Exercise

My laps around the block are helping me with cardio, foot drop practice, but I max out at 3 laps at a time (1.1 mi). I would like to work up to doing that 2x a day, but won't walk alone without the cane. I usually wait for Tracey or Chad to walk with me after work. I have the bike at home, but it doesn't work the balance and foot drop muscles.

My FitBit keeps me on point (except when i forget to wear it) and the Fitstar app, which offers body resistance training that I can modify at home...no equipment needed

Eyelashes are critical to my pysche

Hair, eyelashes.....all moving back in. Hooray!

Sept. 28

Oct. 31

Happy Halloween!
Halloween is one of my favorite holidays. I had help to decorate the porch.
I missed Halloween last year due to illness following my infusion, but didn't want to miss it again this year. It came out pretty nice! Hope you all had a happy, fun and safe one as well.

motion sensor ghouls & skeletons, fog machine, lightening/thunder lights

I was a minion!

Work 

I will discuss return to work with my hematologist and primary this week. I was in such bad shape when I got home, I thought it might be spring. January is looking more promising. (I do have to take off a week in February to go back to Chicago for my 6 month follow up). 

Interested to hear hematologists opinion, as she has overseen hundreds of transplants in her career. She was clear that she doesn't send anyone back until they can give very close to the effort they gave pre-transplant. Her logic is that if you go back too early, you end up back on leave and it sets back the healing process. My biggest concerns for a work scenario (as of today) are fatigue, driving in 40 min of traffic (response times), writing and typing. But in two more months, who knows! 

Gratitude  

The change from day 30 to day 60 to day 90 is noticeable, promising, uplifting and wonderful. Having just come out of a 10 day "rut" I am conscience of, and grateful for, the good days.

I still struggle to do simple things:

• put on/tie shoes
• open a ziploc bag
• take a utensil out of the drawer
• buttons/zippers
• hold a mug
• taking out the trash
• folding laundry
• type
• make the bed

Anything that involves the thumbs has to be modified for me. Pay attention to how often you use your thumbs. Give your thumbs a good massage and a kiss tonight and thank them for being healthy.

Improvements In Progress:

• Learning to walk around obstacles without a cane
• My footdrop muscles are getting stronger
• My labs look to be normalizing the last 4 wks (Immune system in safe ranges)
• Consistently walked over 5k steps a day for three weeks. 
• New goal is 7.5k (includes stationary bike)
• getting physical tools to help with zipper, writing, etc from OT

My friends and family keep me laughing and joyful and grateful.

Visits 

Skype is the best invention ever. 

I'm grateful for the cards, rides, visits, Skype session, texts and calls. My friends are solid. Thanks for making me laugh on the bad days! 

My father has been the world's best Uber driver! I have been trying to give him a break so he can actually live and enjoy his retired life! Thanks Ola for filling in!

Visitation is something I am comfortable with now as long as you or your spouse/child have not been ill recently (10 days). My last three visitors had 1-2 hr travel times, (each way!) -its humbling.

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For now following the yellow brick road to wellness: rest, exercise, therapy, stretches, nutrition, gratitude & patience. 

(I'm not doing well at all with that last one, but those of you who know me well shouldn't be surprised!)

Have a great week!

P.S. Happy Birthday to my beautiful niece Alexis who turns 10 today! Our funny, smart, performer (dances and sings). She won a Halloween dance contest this year......xoxoxo

Day +77: Status Quo & Hand Puddy

Days home: 66

The changes week to week aren't as significant as they were in the beginning.The blog updates may spread out to every two or three weeks. I think there is a way to "follow" the blog so you get emailed when there are changes, but I'm not sure how.

Last week was excited because I started OT. My therapist confirmed I have 50% the strength, speed and use of my right hand compared to normal. My left hand is mildly impaired, but is closer to 85-90% of normal.  I got green hand Puddy!!! Lots of exercises for my hands. Looking forward to seeing changes. Although he does think the majority of this is nerve damage, and will just take time. But our main goal is to get me holding a pen, writing and typing closer to normal.

I have gotten more "steps" in on a daily basis - since last Thursday -  than the entire time I have been home. I count my bike riding in there as well (strap it to my shoe). It shows an increase in stamina overall.  I still nap daily. And today, I think as a result of said steps, I have an abundance of pain in my legs. An evening stroll nets 1.1 miles and about 3,000 steps...plus this view.....

The beau took me on a drive to Half Moon Bay Saturday and we decided to stop by the Art & Pumpkin Festival. Free admission and handicapped parking! It's fairly open and not so crowded (compared to some of our local art/wine festivals), so it was easy to stay away from dense crowds. We were only there a couple hours so between grabbing lunch and peeking at the art booths, it wasn't overly taxing. There were areas to sit and listen to one of several musicians so plenty of places to rest as well. The sunset on the way home was beautiful.

I'm becoming a crock pot pro. I have made some extraordinary meals in my crock pot.....and it's now and addiction. Dinner made easy!!! Lol. Here is one of my faves.
http://www.gimmesomeoven.com/5-ingredient-easy-white-chicken-chili-recipe/

I added baby bok choy and a ton of spices. When served put grated cheese and avocado on top. Yum!

There has been a lot of positive feedback about my last post on depression. Just as a disclaimer, for those that I worried, I am not in a deep depression. In the 77 days, maybe 7 of them have been "blue". It was something that I wanted to address for those in my support groups, as well as for my friends to
be aware of. Having the support system I have, it's hard to stay down for long. I  have some awesome mentors who I can reach out to, they have been through transplant, and can snap me out of a pity party in a hot minute. It's  good to discuss as I think it's not acceptable for depression to ever be a taboo topic.

I'm glad to get on with outpatient therapy. It wipes me out because its hard, but I love it. I expect that 2x a week I will come home to a 3 hour nap.

Overall things are improving. It may be very slow, but i can tell an obvious change from 30 days ago.
Things you shouldn't take for granted if you are able bodied and these are simple tasks:

• Taking a fork/spoon out of the utensil drawer
• Un-twisting that twist tie that comes on just about everything
• Opening a water bottle or soup stock with the round twist off top
• Opening a car door with a pull up/out handle
• Opening a house door (first with the key and then pressing down the leer)
• Zippers, bottons or hooks....of any kind!
• holding a coffee/tea cup from the handle
• carrying anything, no matter how light, with one hand
• pulling up the sheets when you get chilly
• putting on or taking off socks
• tying your shoes

These are struggles for me. Sometimes I'm so weak I have to wait until someone gets home. Sometimes i find the pliers that help. It's humbling reverting back to the skills of a 5 year old. So my friends....enjoy these simple mundane tasks. You have no idea how you will miss them when you can't.

have a great week!