Cheers to 2017

2016 was full of challenges, milestones and learning how to get my footing in this crazy life. I'm so thankful for the people in my lives. The ones who have chosen my needs above their own time and time again. This year has also brought clarity. Mostly about what "family" truly is. 

 

It's been amazing celebrating births, marriages and birthdays with my loved ones. I'm grateful to be another year older and "wiser". 

 

Tony and Stevie's Wedding October 2016

 

My amazing cousin, Tony on his wedding day. It was such a blessing to be there for their perfect day 💕

 

Miss Cailynn's birthday with these amazing ladies

 

My birthday at the lake with Joe, Nessa and Bryan. I love these people and we miss Joe so much since he moved.

 

Pictures with my nieces and nephews 

 

My heart ❤️ 

This year hasn't been a bad one... especially compared to the year before lol. I have learned to walk agin. I'm finally only using a wheelchair while I'm out and about. I've gained my independence back by getting back behind the wheel again. I've also had the honor of meeting and hearing the stories of many others with Guillain Barré Syndrome. I started my blog and have been able to help a few people along the way. It has been great to help others after so many people have given us so much.

 

Alyses first birthday 🎉💕

 

Courtney and Derek's Wedding 

 

These are my people 💕💕- Courtney and Derek's Wedding 

 

Hawaii with Grandma, Grandpa and Kasie

 

When Bryan got his tonsils removed 😂 we were a match made in heaven lol

 

I was lucky enough to make many more memories with these two 💙😊

 

And I was lucky enough to spend another year with my amazing husband... 9 years together and many more to come 😘

Tonight while many of you are out on the town, I'm spending New Year's Eve with my amazing husband watching Netflix... there is nowhere else I'd rather be. We are healthy and together... That's all that matters. Anything beats our version of NYE in SanFrancisco two years ago- I was on life support unable to move anything or open my eyes... I was unaware that a prisoner was in the bed next to me, hand cuffed to the bed with multiple armed guards 😂😂😂... and Bryan in a closed cafeteria eating Cheezeits and watching the ball dropped. 

I hope you all have a wonderful night and new year. Make memories and take too many pictures 💕 I'm blessed to have you all in my life.

Team Gimpy Girl Blanket Drive

Last December 12th on my one year Guillain Barre Anniversary 24 of my loved ones set sail with me to Mexico. We went on a Carnival Cruise and had the time of our life. On our adventure “team gimpy girl” was named. We hashtags everything on social media with it.

Since then, everything I have done in “honor” (I’m not sure if that’s the word I’m looking for cause screw GBS) of me having Guillain Barre Syndrome we use Team Gimpy Girl.

Today marks the 2 year anniversary of me being hospitalized with GBS. I could easily ignore  it instead I celebrate it. I fought. I won. I have my scars… But I’m still here and that’s a blessing. I’m more appreciative than ever before. Last year we went on a cruise to Mexico. It was very symbolic for me to be sailing to Mexico with a tropical drink in my hand on that first anniversary.

 

I have decided that every year I will acknowledge this day. I would love to go on a trip every year but that’s not realistic since it’s so close to Christmas. I really wanted to go sky diving and get a tattoo… but that was quickly shot down by Bryan and my grandma. Lol

So every other year I will be taking a trip. On the in-between year I will be giving back to the community. When I was at the rehabilitation center I started making fleece tie blankets. It helped my dexterity and get be back into crafting. At the beginning I was going to donate them to the main hospital for premier babies. When I told one of my nurses my intentions, she said that was very nice of me. But why not give them to fellow patients right there at the rehab. That a lot of the patients didn’t get many visitors and a blanket would boost their spirits… I was a patient and I never would have thought of donating to there. 

 

Making one of my first blankets while a patient. March 2015

About a month ago I had the idea of having a blanket drive in honor of my 2 year GBS anniversary. I unlisted the help of family and friends and had great results. In honor of the Team Gimpy Girl Blanket Drive I will be donating approximately 50 blankets this week. That’s at least 50 smiles. It’s hard to be a patient and live in a hospital anytime. But extra difficult around the holidays. Blankets were my favorite gift and I loved how they brightened up the dull hospital rooms. 

 

I’m glad to have the opportunity to give back after so many people have gave so much to us the last 2 years. I’m so lucky to be apart of such am amazing community. The elementary school I attended k-7 made blankets and so did one of the local churches. I loved seeing everyone pull together to do something positive for a stranger…

It was so fulfilling going around my old rehab and handing out blankets. My heart is full. As always- I love seeing my old therapists. I only got a picture with Alyssa 😊

 

But it was great to see anyone and to be able to walk around room to room to visit current patients.

 

I was also able to meet up with another GBS Survivor. John it was so nice to meet you and Ash! Thank you for helping me with the blanket drive!

I cant wait for our next Team Gimpy Girl adventure. Hopefully it will be to the Philippines!

"Get Well Soon" a 2 year Update

Everyday this is the first thing that I see in the morning and last thing I see at night.

 

“Get Well Soon”

Today marks two years. Two years into our new normal. When time dragged by so slow you didn’t know what day it was. In the past two years I have learned more patience than ever. I learned how loved I was and how precious life and loved ones are. But in these 2 years, nothing has came to me “soon”.

I am truly blessed. To have this life, however how difficult and unfair it may be. Life may have knocked me down but I’m literally and figuratively “Back on my feet.” 3 weeks ago I was officially cleared to drive. Being back behind the wheel feels so natural and right. 

 

Right after I cas cleared to drive

For 2 weeks now I have been walking short distances without the help of my walking sticks. If I’m out of the house I’ll still keep them in my hands, just in case. I don’t mind falling- it’s part of the process. But every time I have fell it’s been in front of someone. I’m always ok but it makes me feel like an ass because everybody freaks out lol.

 

My happy place while looking for Christmas trees

I’m now to the point that I only use a wheelchair when I’m out and about. My beloved power chair, the “Hot Mess Express” broke over the weekend. It was time to part ways with it but it sure did make cooking a lot easier and safer…. Maybe now Bryan will fix all the damage that I caused with it. Every door frame in our home is messed up and the doors have holes punched into them from my poor chair… I think it’s safe to say that everyone but Hagen and I is happy to see it go.

 

I’ve been back in Physical Therapy for 2 months now. I love being back in a routine. I feel so much better these days. The days when I’m in excruciating pain and fatigue are few and far between. Knock on wood- I haven’t suffered from chronic pain since August. I’m happy I finally found a lifestyle that works for me.

I feel blessed to be able to live this “boring” life with Bryan and our animals. To see my niece’s ad nephew’s grow. To be present when my friends and cousin got married. I’m lucky to have been able to witness these moments. Also to just make everyday memories with the ones I love the most. I look forward to what life has in store for us all. Fingers crossed for only good karma to come our way. 

I have learned so much since getting Guillain Barre Syndrome. I’ve said it before- “GBS has taken a lot from me… but it has given me so much more.” I appreciate the little things that life has to offer. I talk to strangers all the time. Which drives Bryan and Whitney crazy. They have both asked when I’m going to stop being so nice to everyone… The answer- hopefully never. You never know the battles a person is going through. A simple “Hi” or a light conversion can make someone’s day.

Im now back to doing everything for myself. Well besides curling or straightening my hair… Id like to avoid a burnt face. As always- I love to cook and bake. That’s how I got a lot of my dexterity back. My newest hobby is creating items with essential oils. I tried my luck at making Chapstick last week and loved it! I’m obsessed. It’s so silky smooth. It feels so right to be back to creating things. Like my life is truly getting back on track.

Thank you all for following along with my Guillain Barre Journey. All of the positive words and even when a loved one tells me what I don’t want to hear, but needs to be said- thank you. They truly made a difference. To all of my GBS friends- you are all amazing and resilient. Don’t give up no matter how slow your recovery is. Most importantly- try not to compare your recovery to someone else’s. Every case is so different. Thank you all for never forget about me and truly caring about my recovery. 

There is a reason why the turtle is the symbol of GBS. Slow and Steady.

 

Back at it Again

After a busy summer I'm ready to set aside time me to show my beloved blog some love.

Throughout my recovery I have experienced many plateaus and see my improvements in bursts. In February I graduated from Physical Therapy and today I returned to it. I'm excited to be push again and have the opportunity to excel in my recovery and sharpen up all of my new tricks.

In February I left therapy being able to take 14 steps unassisted at the most. My recovery took off at the end of July. At that time I was 90% in my wheelchair I fell in love with essential oils, found vitamins and supplements that I thrive on. I now only use my wheelchair about 20% of the time. I mostly use my walking sticks https://www.amazon.com/gp/aw/d/B00U6W16VY/ref=ya_aw_od_pi?ie=UTF8&psc=1 and lately I have been able to go short distances without anything... or even while holding something in my hands... last week I walked around with a laundry basket. I may have gotten temporarily stuck on the floor of my garage under the washing machine door... but that is just minor details lol.

I had an amazing weekend in Monterey for my cousins wedding. I got to dance like crazy with the people that I love and walk on the sand up and down a hill. I'm thankful for my recovery- no matter how slow it has been.

 
Walking back up the sand

 
"Blame it on my roots, I showed up in boots."

 

My family- minus the two grooms 💕

 

The most handsomest grooms I've ever saw!

 

Doing the Macerana 😂

 

Tony, Kasie, dad and I 💕💕

 

The aftermath... so worth it!

 

No trip to Monterey is complete without going to the aquarium. I was pleased to see this guy! The turtle is the mascot for GBS/CIDP... slow and steady!

A lot of things may be repeated here throughout my blog but this is my personal journal about this crazy journey. It seems crazy that nearly 2 years have past and parts are feeling like a dream. Thank you all for following along and being the greatest encouragement!

Love for Luke

Luke- I have been a fan since the very beginning. I was sooo excited when my boyfriend- now husband, got me tickets for a huge Kenny Chesney concert in San Francisco in 2008. But not because of Kenny or the other big names... But because of you. 

I have spent countless hours cruising around on dirt roads listing to your CD's. Especially "I'll Stay Me" I may have cried when I sold my car and left it in the CD player. I still had it in my iPod but that CD it's self held so many memories.

Fall of 2007

I have went to 5 of your concerts. The latest was in Sept or October of 2014. I had no idea in 2 short me months my life would turn upside drown and my faith and strength should be challenged more than I could ever imagine. 

Fall 2014

In December of 2014 I was struck with Guillain Barré Syndrome. It's a rare autoimmune disease that generally affects 1 in 100,000 people. In true Justine fashion I was diagnosed with the most rare variant- AMSAN which affects closer to 1 in a million. 72 hours after my first symptom- a droopy eyelid I was completely paralyzed & on a ventilator. My eyes were shut and fixed for 5 weeks I had lock jaw. The only thing on my entire body that would move was my thumbs.

December 2014

It was a hard blow to my self and everyone who loved me. From an out going 26 year old to some who was locked in their own body. Guillain Barré Syndrome attacks the lining of the nerves called the myelin sheath. It's an odd disease where over time the myelin regrows and in most cases the paralysis reverses. From the beginning my husband and loved ones had Pandora playing 24/7 for 2 months- mostly on your station... But I will admit that I may have freaked out a bit and wiggled anything that would move every time "Drink a Beer" came on. It's a beautiful song but not exactly what you want to hear while a ventilator is breathing for you 100%. From the beginning I was fully concise. I could hear everything around me but didn't learn to communicate until the 3 week mark and that was usually just "suction my spit" lol.

Being alone with your thoughts is hard for any person but I was stuck with them for the 2 months that I was on a ventilator and unable to talk. When scary things were happening I would say a prayer and usually sing a Disney song in my head or repeat song lyric over in my head. Your music and words truly saved my sanity and for that I could never tell you thank you enough.

February 2015

I was in hospital care for 4 1/2 months. I have now been home for over a year and I'm 19 months into my recovery. It's been a long hard journey but through it I have found my strength. I know my worth and how much I'm loved and cherished. I'm learning to walk again and I'm able to take a few steps unassisted. Although every time I do, my husband starts singing, Michael Jacksons "Thriller". Lol

I try to not let being in a wheelchair stop me from doing the things that I love. I strive to challenge myself and to not say I can't. I would like to see you in concert once again because that is what the original Justine would be doing this September. More than anything I would love to meet you one day. Just to say thank you in person for everything that you have done for me with out ever knowing.

February 2016- Kaity and Whitney helping me walk over the finish line at the color run.

My goal was to attend your concert in Wheatland CA this September. Apparently I was to focused on laying on my couch and watching Netflix to realize that the tickets for that concert already went on sale. Unfortunately handicap accessible seats are hard to get because there is so few. They are already all sold out. I asked if I could get an isle seat and simply stash my wheelchair out of the way but the lady I talked to said that wasn't possible. That my chair would have to be my seat. That I could purchase tickets for normal seating and on the day of they can try to find somewhere to put me but couldn't guarantee where that would be and why the view would be. On behalf of other fans with disabilities, I don't think that is fair. 

July 2016- out on the boat at the lake.

I would be thrilled if this actually got to you. And again thank you for your words and music. Someday, some how I will have the pleasure of meeting you. Until then I'll be pushing my limits to get out of my wheelchair forever.

#lukebryan

Healthy Choices

I've been trying to make healthy choices the last few days. Since I'm not very mobile and take medication that is known to cause weight gain it has indeed caught up to me. 

I purchased a new veggie spiralizer and tried it out last night with zucchini to make zoodles- zucchini noodles.

 I had them with this Creamy Sundried Tomatoe Chicken and it was wonderful.

http://www.chef-in-training.com/2016/04/slow-cooker-creamy-sun-dried-tomato-chicken/

I'm not an breakfast person and usually don't eat until 12-1ish. Today I prepared smoothie packs for the freezer. It took forever; a hour and a half for 6 smoothie bags... Ugh, being fat is so much easier lol. 

I wrote on 6 ziplock bags what I would be putting in them. I figured when it was time to blend them up I could throw in extra fruit I had on hand.

I washed, pealed and chopped up mangos, pears and kiwis. I've decided I'll only buy pre cut mangos from now on. Those suckers are slippery and hard to cut up- with out cutting off a finger. My hands are still always numb and tingly from neuropathy left by my Guillain Barré. But atleast I have smoothies ready to go for a week.

 Mangos

I figured out that it was easiest for me to set the bags in cups to keep them up right.

Kiwis

Pears

I fought with my enemy- the seal on ziplock bags and flatten them out and stacked them up so they will easily fit in the freezer.

For dinner I tried out this recipe For Taco stuffed mini peppers

http://skinnyms.com/skinny-bell-pepper-nachos-recipe/

Ground turkey, cheese and salsa in a mini pepper and baked. 

Topped with Greek Yogurt. I'll definitely be making these again.

Having yummy recipes like these make eating right a little easier. I'm grateful to have a second chance in life since my fight with GBS. Now hopefully I can get in a routine with going to the gym.

To other GBS or autoimmune disease fighters; what changes have you made with your diet and lifestyle. I'd love if you could send me your favorite recipes to justinesgbsjourney@gmail.com