3 Years. Forever to go

Tuesday, December 12, 2017 0 Comments

My second year as a gimp has came to an end. I figured I'd do a little survey and do it yearly to measure my progress. It's easy to forget how far I have came.

Medication: 400mg Gabapenton down from 1200mg at the beginning of the year and 2800mg at my worst

Mobility: I wobble around pretty good these days. Mostly with a walking stick but it's not uncommon for me to loose my stick for days at a time lol. I do bring my wheelchair on trips to have just incase. I have been without a wheelchair for daily use since Christmas of 2016 so nearly a year! But if I do go to a store where an electric cart is offered I do use it.

Pain: Managed with essential oils and doTERRA's Deep Blue Pills but mild pain is still there daily. You just learn to keep going.

Fatigue: Managed with doTERRA's Life Long Vitality Vitamins (half a dose). I still do have a few days a week spent on the couch unable to do much especial if I over do it.

Insombia: has gotten so much better. I may have a week or so every 4-6 months.

Headaches/migraines: Still get them but now less frequently

Foot Drop: Still there but I don't let it slow me down. My goal for this year is to wear my AFO's more and work on my droopy feet.

Physical Therapy: have been on a break since May. I will go back in January to mostly work on strengthing my knees and my foot drop

Depression: this has been the worst year for my depression and anxiety. There has been many times in the past 6 months when I have struggled. Im not sure if the severity if what has happened to me has finally sinking in after being in the sink or swim mode for so long. Who knows. Luckily I do have a wonderful suport system and medication available as needed.

Flare Up's: I had a bad flare up in January/February where I was convinced I was relapsing. That causes a huge anxiety attack and the start of writing up my wishes if something were to happen to me again. Very stressful and a bit heartbreaking to have to relive some of those buried emotions. I had an other mild flare in July. Mostly just weak hands, extra numbness and fatigue. I've pin pointed flare ups to happen about every 6 months.

Other Medical Issues: I was diagnosed with Endometriosis in November. I had a very small surgery to remove spots of endo (sorry if this is the first you have heard about it. I didnt want to worry everyone over nothing). My doctor says that endomitros is an autoimmune issue like Guillain Barré Syndrome. With removing the spots it should improve my immune system. I was also diagnosed with hypothyroidism and will start medication next week.

Trips: Reno in June, Oregon in August for a 4 day concert. Tahoe in Late August, The Philippines in Late November-December

Things checked off my Bucket List: Ziplining, Riding on a Motor Bike, Swimming with Whale Sharks, Swimming under a waterfall

New hobbies: my awesome husband surprised my with a nice camera for our anniversary. I've been wanting one for years. Learning the camera has been a welcomed challenge. Trying to get the perfect picture has been like physical therapy. It's made me work on my ballence and crouching down. It's also be great emotionally taking pictures that make others smile.

Other things to mention: I was featured in Daily Mail in June
And Chat Magazine in their December issue.

Goals for year 3: completely ween off of Gabapenton, wear AFO's more often, volunteer my time more and get better at photography.

Did I miss anything? Feel free to ask questions, I'll do my best to answer them

What im Watching- October

Wednesday, November 8, 2017 0 Comments

This is what I watched in October. If your looking for a show to watch, I hope these lists can give you an idea on what the next show you should waist your time on should be.

Kevin (Probably) Saves The World

⭐⭐⭐⭐⭐ 5 Stars 
What a fun easy to watch show. Plus I love the cast.

The Good Doctor
⭐⭐⭐⭐ 4 Stars
Im realy enjoying this so far. I'm not personaly close to anyone on the on the Autisum Spectrum. So I do not know how fairly the part is being portrayed.

Grey's Anatomy
⭐⭐⭐⭐⭐ 5 Stars 
This is the first show I ever got hooked on. Whenever I have "the dark and twisties", need background noise or something comforting to watch I turn on Greys

Jane The Virgin
⭐⭐⭐⭐⭐ 5 Stars 
Lovethis show!!! Growing up I loved watching telonovellas. This show always gets me laughing and is the best kind to binge watch.

The Last Ship
⭐⭐⭐ 3 Stars 
I really enjoyed the first 2 seasons and watched it because of McSteamy ❤ for those of you not obsessed with Greys Anatomy thats Eric Dane. 
The last two s3asons have kinda lost me. They were just ehhh.


Im not going to assign it any stars just yet. Im 4 episodes in and havent been able to get in to it yet. But I will give it a fair chance.

Stranger Things
⭐⭐⭐⭐⭐ 5 Stars 
My husband is all about Stranger Things so I have watched it and enjoyed it.

⭐⭐⭐⭐⭐ 5 Stars 
So easy to binge watch and Ive never been into comics 

The Sinner
⭐⭐⭐⭐⭐ 5 Stars 
So incredibly good. Go watch it now!

Have any sugestions for me?

Conquering Fears- Floating Part 1

Thursday, October 26, 2017 0 Comments

Have you heard of floating pods? If you haven't, dont worry I had no idea it was a thing until 2 weeks ago.

So floating... Well when I first heard about it I thought it was creepy lol. What happens is you get into a depervation tank filled of only 10inches of salt water. The salt causes you to float. Without gravity basically it allows you body to truly be at rest and often pain free.

If you wish, you can close the lid to the pod. While in the pod you gave the option to have a colored light on.  In theory if you do have the pod shut and lights off you deprive yourself of light sound and touch which ends up in a very restful hour. One hour in the pod can equal 8 hours of good sleep.

There are all kinds of wonderful health benifits to floating. For myself im mostly hoping for relief with my chronic pain from Guillain Barré Syndrome.

As always I over think everything. Just thinking of voluntarily putting myself into a situation alot like in my early days with Guillain Barré/ Locked in Syndrome... Being in a small dark place, no sounds and having to stay still made me nervous but I'm to a point where id try just about anything for this thing called chronic pain. For the most part I keep the bad pain at bay with essential oils and supplements but that's all for a diffrent post.
Im still in pain every single day.

I went in knowing that this wouldn't cure me in one hour. That this is something I would have to commit myself to do 3-4 times to realy have an idea on what it could truly do for me.

I mentioned floating to my husband and said we should go. He gave me a quick and expected no. Haha

The next day he texted me and said that I should book a time for us to go. He researched it and was intrigued.

When I made reservations I made sure that they could accommodate my gimpy self. Ha! I have yet to use my own bathtub in fear that I won't be able to get out. I also still use my shower chair because falling in the shower and being the naked 29 year old in the shower call to the fire department is a very real fear... Especially when your uncle is the Chief, brother in law is on the crew along with past teachers and classmates... Ya. Im extra careful.

We arrived at the float spa to sign in. We chatted with the lady who asked us to take off our shoes before leaving the lobby. They had provided flip flops for us to wear... Well since im special and heartbreakingly can not wear flip flops, I went barefoot. I still do not have all the movement in my toes and my hands and feet sill always feel asleep. This prevents me from holding on a flip flop with my toes. They just fall right off and would be an accident waiting to happen.

We were brought to a small room to watch a short video on what to expect and how floating worked. After that they gave us a tour and took us to the ADA room where she showed us how to work everything and what to do.

I stayed in the ADA room but was a bit nervous getting in all by myself and walking on wet tile. You are given the option to go into the pod naked or with a swim suit. I chose a swim suit just incase I fell and for good measure I left my door unlocked. Before entering the pods you must take a shower and use the shampoo and body wash provided. The reason is to get off all of your products so the water wont be contaminated. But before you shower they recomend putting in ear plugs that the provide. The ear plugs are so the saltwater doesnt get into your ears but the seal better in your ears if you place them before showering.

The ADA shower area was convient. Not pictured is a small portable shower chair. After showering I placed it right next to the pod. I was able to swing my legs around into the water. While hanging on to the edge I slid right in. The salt water is very silky and slippery. The one thing I would have liked to have had was a bar to hang on to. But I made do.

Once in if you would like the lid closed you have to kneel in the water and pull the lid closed. I chose to keep it open just a crack.

You lay down, find a position and try your hardest not to move. Every Once in a while i would bump intoe sides. I just let it be. For the first 15 min light peaceful music would play and then there was complete silence. It was a little freaky when I realized all I could hear was my own heartbeat. I choose to keep that blue light on, cause well, baby steps.

The recomend counting to 300 to relax. But for me that wasnt so relaxing.  It surfaced alot of bad times. When I was ventilated, to calm down and fall asleep I would count, sing 100 bottles of beer on the wall and sing the ABC's backwards.

While floating I couldn't feel any pain. The water is skin tempiture so you couldnt really tell if a body part was above the water or not. So weird. Towards the end I felt my body twitching and I fell asleep for a short while until the music came back on.

After getting out I showered again to get all the salt off of me and then met Bryan in a relaxing little room. Complete with yoga mats, essential oil diffuser, tea and journals to write in.

When I found him he was sitting recieving flavored oxygen... Weird. Weird. Weird...

As someone who had a treacheotomy and spent months on a ventilator and then oxygen through my nose the thought of being hooked to oxygen for fun baffles me... Let alone flavored oxygen. I watched Bryan enjoy his vanilla air for awhile. He talked me into trying it myself. I chose peppermint. That lasted about 2 minuets. I just cant get past all the bad memories attached to an oxygen tank or ventilator.

After leaving I felt wonderful. It was truly an awesome experience that I hope all if you will try atleast once.

While floating I had no pain but unfortunately it started creeping back about 45 min later. First with my knee and hip and then intense pain down my spine.

Like I mentioned above. I already decided to try 3-4 times before giving my total opinion and knowing how my body truly responds.

This is not Holy water. This will not cure you in one hour. I have a chronic illness. An auto immune disease that effects my nerves. Nerve pain is extremely hard to treat and for that I will stick with it and see how it can really help in the long run.

If you are curious in any way, just try it!

Im hoping to go again this week. I will be updating after each float experience.

Guillain Barré Awareness Rocks

Monday, October 23, 2017 0 Comments

Have you heard of painting rocks?

Painting and hiding rocks is a fun activity being done all over the world. Its an easy way to make others smile. I joined a few local groups and participated in on the fun.

I thought it would be the perfect way to spread awareness about Guillain Barré Syndrome. So I created a group on Facebook. Id love for any of to join and help spread awareness. On the group I have added some info about GBS and will continue doing so. When someone finds a GBS Rock they can come to the group to learn about GBS.

As someone who is recovering from GBS, painting rocks has been a great outlet for me. Its helped with my dexterity and anxiety. Hiding and finding them has gotten me out of the house so much than usual. Im walking more and more and having fun 💙🐢 Its been a great thing to do with my niece, Hadlie and nephew, Hagen.

Its easy and fun! All you need is some paint (I use the .50 cent craft paint from Walmart and old nail polish), brushes, rocks (I get mine from my front yard. No need for anything fancy), and clear spray paint. Optional is a printer to print the QR Code (in files) and Modge Podge.

Pinterest is a great reference for ideas. Just have fun. Feel free to paint ribbons, turtles, motivational lines, ect. On the back of the rock please write "FB- Guillain Barre Awareness Rocks". Hash tags work too! #GBSAWARENESSROCKS. I also add our local rock group and my hashtag #thegimpygirlwhocould

Once you hide a GBS Rock, post a picture and its location- Town and State. When someone finds it they can come to this page, find your picture and post that they found it.

If you find a rock you can choose to keep it or rehide it. If you rehide it, please post a picture and where its located and where you first found it at. Lets see how far these rocks and knowledge of GBS can go.

Lets get the word out about Guillain Barré Syndrome 💙🐢


Please join us on Facebook- Guillain Barre Awareness Rocks

If you already paint rocks we would love if you would add our group info and #GBSAWARENESSROCKS to the back.

Here is a link to a story our local paper wrote about the local group im in. They even nention me but mispelt my last name lol

What Im Watching- September

Like most people with chronic illnesses I end up watching alot of TV. Im always looking for shows to binge watch so I figured Id do you all a favor and let you know what im watching each month and let you know how I like it.

Brothers and Sisters
⭐⭐⭐⭐⭐ 5 stars
I really enjoyed this show. I can definitely relate to their dysfunctional but loving family

This is Us
⭐⭐⭐⭐⭐ 5 Stars
This is one of my favorite all time shows. Im excited for season 2. Id recomend it to anyone looking for something to binge watch.

Against The Wall
⭐⭐⭐⭐⭐ 5 Stars 
This is another good one. I watched it when it first came out in 2011. I rewatched it and still loved it. Im bummed it was only 1 season.

The Game of Thrones
⭐⭐⭐ 3 stars
ehhh... I probably going to have all of you saying im crazy but I just cant get into it. I did like the first 2 seasons but seasons 3 & 4... I just dont feel like keeping up with it and binging for hours. Ill eventually get back to it.

The Night Shift
⭐⭐⭐⭐ 4 stars
The Night Shift is decent I really liked the first few seasons. I watched them in a few days. But it did start slowing down in the last season. If it gets a new season I will most definitely be watching.

Ill make a new post monthly about what I watched that month. It will probably be a mix of new to me shows and rewatching ones I love. Ill also work on a list of my all time favorites... yes I need a new hobby.

Subway Caves- The Gimpy Girl Who Could goes hiking

On Saturday we celebrated one of my best friends birthdays. She requested a day hiking through Subway Caves. I was excited to be invited to come along and up to the challenge.

I had such an amazing day hanging out with Kari and everyone. Sometime its nice just to "be". Driving down the road singing to The Judd's and other 90's country with Kari and Shell just makes everything right. Although it realy made us miss Rylee.

It was a beautiful day. Bits of snow on the way over and fall colors everywhere. The caves were nice and chilly. I came prepared with a flashlight, my walking stick, oh and baind aids... lots of baindaids and a few choice essential oils and a little chair to carry along... but lets be honest, Nessa ended up packing it for me lol.

My sassy little niece, Alyse 😘

There was a few flights of stairs to get to and into the caves. Once in the caves its pitch black and the ground is very uneven. The caves its self is actually lava tubes from Mt. Lassen. For "normal" people its not much of a hike. Just a nice little .6 mile stroll.

Kari, myself and Shell

Me, Shell & Alyse

Alyse loved the caves or as she called the "cages" and didnt want to leave.

It was a nice challenge for me and just plain awesome to be able to do something with my friends that they actually want to do without modifying it to my gimpyness. To top it off, I only fell once... Winning!

 A close up on how rough the ground was. This was the smoother part.

But as predicted, I over did it. Im currently writing this cuddled up on my couch in my dark living room. Living with a chronic illness sucks but hey... Im living. Just look how far I have came and remember. "Normal is just a setting on a washing machine."

Here is a link for more info about Subway Cave in Northern California