Category: Change
Showing posts with label Change. Show all posts
3 Years. Forever to go
Tuesday, December 12, 2017
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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 http://www.dailymail.co.uk/health/article-4602430/Woman-28-paralyzed-CONSCIOUS-five-weeks.html
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 is a Spoonie?
Monday, May 23, 2016
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Instagram has turned out to be a blessing when it comes to spreading awareness about Guillain Barré. Through hashtags I have come in contact with so many people who lives have been changed. Either by GBS or other chronic illnesses.
I kept coming across #spoonie ... So I googled it and looked it up on Pinterest... Naturally lol.
Spoonie is a term that describes someone with a chronic illness or invisible disease.
I'm forever grateful for my recovery. It may be slow, but it's progress.
When we were taking these pictures my husband and My bff husband were trying to figure out what my sign ment. The best they could figure was when I had to be spoon fed lol.
I may have more bad days than "normal" people, but I love my life and so thankful to for all of the understanding people in it.
Instagram and those stupid little hashtags have introduced me to a community of amazing people that are living with chronic illness like me. Having a community has been so important and helpful in my recovery.

Change
Thursday, February 25, 2016
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This is not the life I chose, but I respect it and I'm glad that I'm here to live it. I'm glad that I get to share it with the people I do.
Since my world started spinning 14 months ago I clung to anything that would give me a since of purpose something that would remain constant... That has been my therapies. I've had about every kind you can have, speech, occupational, recreational and physical therapies.
I've been done with speech, recreational and occupational for months now but today was my last physical therapy session.
It's amazing how far that I have came.
And this is from today- my last day having PT.
I walked 500 and sum feet 😊
Stair steps
Balancing on one foot
As always it's bitter sweet. I'm so proud of the progress that I have made but it's always hard to leave behind the therapists and staff that I see on regular basis.
Today I brought in cupcakes and said my good byes.
Thank you to Eric and Gabe- who wasn't there today.
On the way home I stopped in at the local gym that's around the corner from my house. I got my membership and will be able to mob my powerchair- the "Hotmess Express" over to work out all by myself... I better order my orange flag for my chair now 😜. I'm excited for more freedom and the next step in my journey.
Thank you to every person who gave up their free time to take me to therapy or to come watch my progress. I love you all and appreciate more than you will ever know!

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