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The Faces of Guillain Barre 2017

Thursday, March 2, 2017 0 Comments

May is quickly approaching and with it is our chance to spread awareness about GBS. May is Guillain Barre syndrome awareness month. Last year I created a series on my blog called "The Faces of Guillain Barre". I was blessed enough to have enough support to spot light one GBS story a day.

I had so many well wishes and thank you for featuring this series. I'm excited to receive more stories to be able to make this happen again this May. I need at least 30 testimonials but would love to be able to share more. Or carry it on throughout the year.

Any story is welcomed. I just need them by April 7th. Im hoping to have a well rounded line up. Here are some topics I would love to include;

Newly Diagnosed
5 years out
10 years out
20 years out
Permanently in a wheelchair
Kids
Stem Cell transplant
Memory loss
Has a blog
Wrote a book
GBS triggered by- Flu shot, Pregnancy, Surgery, Zika Virus

Same family
Relapsed
CIDP
Locked in Syndrome
Medical Canabis
Men
Teenagers
Future health problems- other auto immune disease or cancer, ect

Service animal
Other Countries
Athletes
Feeding Tubes
Ventilator
Has young kids
Extended IVIG
Misdiagnosed
Hyperbaric chamber
Miller Fisher
AMAN
AMSAN
Chemo
Surgery for foot drop

All I ask is a summary of your GBS journey, treatments used, date diagnosed, where you are from, at least one picture but the more the better. A before, during and current picture would be great.

We are so blessed to be apart of great community. Sharing my story and writing on my blog has been unexpectedly therapeutic.

A special thank you to all of you who participated last year. I would love an update and to repost your stories!

Please email stories by April 7th.
justinesgbsjourney@gmail.com

Timing is Everything

Wednesday, January 11, 2017 0 Comments
I'm a firm believer that everything happens for a reason. A year ago I felt a strong need to create a blog about my Guillain Barré Syndrome journey. I was nervous about my writing skills and to lay pieces of my life out for the world to see. But I knew in my heart it was the right thing to do. I wanted a way to give back and reach out to people on similar paths. From personal experience I knew there was a need for a place that GBS Fighters and their loved ones could read stories of others. Where they could learn and maybe understand a little more..

 


GBS is scary stuff. There are no guarantees or real answers. I had to hit rock bottom- loose my ability to move anything but my thumbs before I hit my plateaue and started to recover. At that time I was desperate to hear about others. Yes my experience wouldn't be the exact same but I needed scenarios. I needed to know the truths... That yes some people do loose their fight but more often than not they survive and lead normal lives... But what it "normal" anyway?

 

In June I met the sweetest woman through social media. She was also recovering from Guillain Barré Syndrome/ CIDP. She told me that she found my blog and Facebook page when she was in the hospital and newly diagnosed. She talked about how much it helped her and thanked me. Since the beginning I have felt a connection to her, our lives are very similar and we are both crazy over our nieces... and nephews for me 😜💕 I'm forever grateful that we crossed paths. It makes this whole ordeal a little more bright and shiny.

I realized today, that it is her 1 year anniversary of being diagnosed and hospitalized. I launched my blog 2 days before her life was thrown for a loop... Timing is everything & everything truly does happen for a reason.

 


Oh and P.S.- as of today it's been a year since I took my first unassisted steps 😊 I've officially been wobbling around for a year. In a perfect world I would be running by now... but in reality I have always hated running. Slow and steady 💪🏻🐢💙

 
I thought I could only take 2 or 3 steps without holding on to the bars... I took 14 😊🐢💙💪🏻

 
Hagen and I after my big walk 💙💚
 
If you or someone you live has been thrown into this crazy journey, just know that you are not alone. I have met so many of you through Facebook and Instagram and value our chats. "Keep on dreaming even if it breaks your heart".

On This Day

Monday, January 9, 2017 0 Comments
I'll be the first to admit that I love the "On This Day" feature on Facebook. Over the past month it has stopped me in my tracks more than once. Reading the posts that my husband and loved ones carefully wrote out. The comments and prayer request after prayer request.

Seeing the love that these people, my people have for me. It feels good and hurts at the same time. I hate that the love these people have for me caused them so much pain and heartache. Not having answers was the worst.

 

Today January 9th marks two years since I was transferred to a long term care facility. I remember being terrified because I knew I would be alone on that first night. When you are unable to see or voice your needs it's unimaginable. I remember before I was transferred letting Bryan "know" to give my "list" of usual needs to the ambulance and care facility. The list consisted of; fan? Repositioned? Music?Chapstick? And then they would name body party's from my head down to find what was bothering me. I would shake my thumb when they named the right thing.

 

On the ambulance ride from Chico to Folsom- about an hour and a half, I recall a medic asking if I was in pain. I wiggled my thumb "yes" I figured they would push pain meds through my port thingy... not to be shanked by a syringe while on a bumpy road in the middle of nowhere Northern California... I really didn't see that coming lol.

Once I got there my anxiety was through the roof but I was instantly calmed once I heard my cousin, Tony's voice. He was definitely my hero that night. I knew in my heart that he wouldn't let these new people who didn't know me, kill me lol... you don't really think rationally when you are unable to speak or have a conversation for a month lol. Then I heard my mother in laws voice. I felt so loved and relieved. To go from expecting to be alone and terrified to surrounded by two people who loved me. I know it wasn't easy staying up all night and interpreting my needs. I love you both so very much.

On that day was also the begging of me being able to open my eyes after nearly a month. They would only squint open and could not focus. But it was a start. 



Last year on this day, this blog officially began. It has been a hell of a journey and I'm so thankful for all of the wonderful people it has connected me to. I never dreamt that my words would travel so far. It's an odd but wonderful feeling. I wanted to create a place where GBS fighters and their families could go for support, answers and to easily find stories of others. I'm so proud of my project "The Faces of Guillain Barré" and how many people it helped.

 

I never thought I would enjoy writing. It intimidated me to be truthful... but spilling these words out has helped me heal. I never expected that. Thank you to each and every one of you who deal with my ramblings!


Today I woke up to my phone buzzing like crazy from multiple texts from my sister, Brandi. She told me she would pick me up in 30 min and I was going shopping in Chico (30 min away) with her.

Then I realized that all 3 of my walking sicks, my wheelchair and handicap placard were in my truck that was with my husband at work.

I decided to challenge myself and to go anyways. We went to a few stores for Brandi and then lunch at Hulas- Mongolian BBQ. It still feels weird to be up right while out and about. It's a whole different perspective. We then roamed around Ross. I pushed a cart for added support and then found a comfy chair to camp out in.

Well I survived my first shopping trip without any Gimp equipment 🙌🙌  whoop whoop! But I promptly took a nap when I got home lol

Yay for milestones. And extra points to me since I accomplished this while having a flare up- sensitive skin, sometimes it feels on fire, fatigue, aches and pains, sickness, headaches, ect. It's not fun but I'll take a flare up over a relaps any day. On these days I try to get extra rest and pull out an adult coloring book. They help me not think about my pain... and who doesn't love coloring?


Hopefully January 9th, 2018 bring something else exciting.

365 Days of Writing- Day 3: Am I Content

Tuesday, January 3, 2017 0 Comments
Day 3- Am I Content 

 

Contentment can be hard to reach. After learning and accepting that my life is not what I thought it would be. No one ever thinks they are going to be the one that comes down with a rare medical issue. Four years ago when I married Bryan, if someone asked what I thought the next few years would hold for us- I would have said maintaining our boring low key lives and starting a family, maybe returning to school.

Letting go of what I thought my life would be like has been the hardest part of this journey. But throughout this process is have found my strength. I have also found my voice. I have had the opportunity to talk to and befriend amazing people that without GBS I would have never “met”. I have to believe that everything happens for a reason. I can confidentiality say that I’m content in this life that I’m blessed to live. To truly be surrounded in love and to know how precious my life is.

This Tim McGraw song is beautiful and fits in with how I feel perfectly ❤❤



365 Days of Writing: Day 2- What I'm most grateful for

Monday, January 2, 2017 0 Comments

Day 2: What I'm most grateful for

 


Having a chronic illness really made be appreciate what I have in life. I know how lucky I am to have such an amazing, devoted husband. A dad who is there when I need him and to fill both the mother and father roll. Hands down I could not have survived my hospital stay without my dad and Bryan. I will forever be grateful for them for always putting me first.


 

January 2015- Bryan and I... I had no idea how I looked, I thought I was smiling. This was when my eyes first opened after being closed for 5 weeks... but then they wouldn't close for months.


 

Dad and I on our "Independence day" from Sutter- Roseville Rehab 


 

Both Bryan and Dad trying to but my hair in a pony tail lol.



My family; aunts, uncles, cousins, siblings, my nieces and nephews, friends who have become Family, my community and so much more.


 

My cousin Kasie and Aunt Kim camped out in my room in the ICU


 

Kasie, my aunt Leann and grandma visiting me after I was transferred to Sutter- Roseville Rehab... I'm definitely grateful to have my smile back and to not have a catheter 😬


I have a place to call home. Plenty of munchkins to love and spoil. The best and fattest dog who loves me. I can take care of myself- wipe my own ass (yay), drive again. I feel like I'm finally on the path to getting my life back.


 

Photo by- Matt Sanchez 



 

Sage and I- March 2016... Photo by- Matt Sanchez


I can open and close my eyes when I chose. I can breathe on my own and not depend on a machine. I can tell the ones that I love how much they meen to me. I can walk. There is so much to be grateful for. 


I'm a lucky lady and so very blessed to get a second chance at life. There is always something to be grateful for!


 


365 Days of Writing- Day 1: My number one goal this year

Sunday, January 1, 2017 0 Comments
 
'Tis the season of New Year's Resolutions. I wanted one for my blog and to get me in the habit of writing every day. My goal it to write about something everyday.At the first of the month I will post my monthly writing prompts. 

 

I hope to be writing a lot more about my experience and challenges with Guillain Barré and living with a chronic illness. This May I will also be picking back up "The Faces of Guillain Barré. I'm hoping to be able to post updates from everyone I featured in 2016 along with new stories of other fighters and their families.

 


I look forward to connecting with more people on the same path of life that I am. As always I'm excited to help as many people as I can. If there are any subjects you would like me to write about, feel free to send my your ideas and questions. I try to be real and honest in the hopes of helping others. 

I have never felt comfortable writing but this blog has helped me heal in many ways. My Guillain Barré experience is starting to feel more like a dream... sometimes a nightmare but it's finally doesn't hurt as much to think or talk about. For that I'm thankful but I do want to write down as much as possible about the past two years while it is still fresh.

Cheers to 2017

Saturday, December 31, 2016 0 Comments

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.