One Year

It was nearly one year ago (November 6) that I found myself laying in the Intensive Care Unit surrounded by beeping machines with a constant stream of different neurologists coming in and out of the room. After receiving another dreaded spinal tap, I was diagnosed with "Guillain-Barre Syndrome"...again. In my drug-addled haze, I found it hard to communicate all the questions that were echoing inside my head.

I kept thinking:

"What? My doctors told me this couldn't happen again!"

"Am I going to have to start all over? Oh man, a wheelchair...again!"

"Why? How? This makes NO SENSE!"

It was a LOOONG 9 days of feeling completely helpless and locked up. I didn't have a window in my room, and they kept telling me I had to stay longer. My parents were finally given permission, on the eighth day of my stay, to wheel me down the hall to a window. I have never been so happy to see outside!

Once I was released, the real work began. I received in-home physical and occupational therapy 3 days/week until I was strong enough to start outpatient therapy. I was incredibly blessed with all of the therapists and assistants that worked with me! 

I have been thinking a lot about how thankful I am to have come so far in one year. I prayed more in this past year than I have ever prayed before- Begging to be healed. Looking back on this year, I can see my progress and know that God was there the entire time, placing the proper people within my path. I've been lucky to have an amazing support system and great team of doctors.

This year I have:

• Had so many medical appointments I’ve lost track.
• Spent so much time at Physical Therapy that the staff became my friends!
• Spent hours researching anything that could promote healing.
• Ate lots of clean food.
• Wore leggings or mesh shorts nearly everyday of the year...real clothes hurt!
• Became a smoothie queen!
• Watched my family and friends show me a crazy amount of love and support.
• Molded play-doh, stacked coins, and perfected nuts and bolts until I wanted to scream!
• Built multiple “obstacle courses" in our living room for practice.
• Cried in a waiting room knowing everyone could see and didn't care.
• Learned to walk, jump, tie my shoes, and write my name all over again.
• Received five rounds (three transfusions per round) of new plasma… and counting.
• Been so bruised that I looked as though I had been hit by a truck.
• Quit getting anxious about needles…any needle… any size!
• Learned to embrace the madness and be thankful for this season, even if I want it to be over!

It has been a life-changing, hard, happy, frustrating, crazy year! I will never quit thanking and praising my friends and family for their support and encouragement. I hope no one gets angry that I used pics of them in my "One year video"...Each of you were such a big part of my healing journey! Sorry… not sorry! 

Here is a look back on the highs and lows....and here is to the next 365 days of continued healing!

I do not own the rights to either of these songs. (They have however, both played in my ear phones over and over this year!)

Put on Your Positive Pants!

Happy Hump day friends! We have made it half way through the week! Today, I want to chat about POSITIVE THINKING. 

POSITIVE THINKING is so much more than that cute Pinterest quote you came across or those pretty letters on your coffee mug. (side note: that fancy mug above came from Target!) Those things aren't bad… at all. In fact, they’re actually great reminders for us to “put on our POSITIVE pants!" I know for me, seeing a quote on Instagram doesn't automatically turn my frown upside down! I will admit that I’m often guilty of being that "Monday morning Facebook quote poster," complete with hashtags! Like I said before, posting that quote isn't going to change anyone's life, but it might be a great reminder to slow down and look for things to be thankful for. 

I think (or at least I hope) we all have a few people in our lives who are just SO POSITIVE! I immediately think of two women in my life who are the human embodiment of POSTIVE THINKING. They both speak joyful and POSITIVE words, and I don't think I have EVER heard either of them speak negatively about anything! They always seem to focus on the bright side of things. They are the kind of women you want to hang out with and be like! 

When I first came home from the hospital I was in a lot of pain. I was mad at my situation… I was bitter about the things that had been taken away from me… and all of that negativity was showing up in my words, my face, and my attitude! I can remember the conversation that began a slow transformation in me. My husband politely told me that, "being cranky wasn't helping anyone involved." It was a hard truth to swallow. I felt like I had the right to be CRANKY! However, as I began to think about the effect my attitude was having on myself, my family, and others around me, I knew I had to change something.

It was not like a lightbulb that immediately switched on. I still struggled with finding joy in certain situations, but I started by finding ONE THING, just ONE TINY THING that I could be thankful for each day. Some days were easier than others. Some things were more obvious to identify. 

Eventually, I noticed that by finding things to be thankful for, I was finding the source of happiness- and my entire family's focus began to shift. We became the family who got EXCITED about the small things. My boys began to cheer for my progress instead of feeling sad about what I still couldn't do. I began to find the “small wins” in my life such as: 

• Walking across the living room unassisted
• Getting out of the bathtub on my own
• Cooking a meal
• Tying my shoes

It would have been easy to point out all of the things I COULDN'T do, but those simple, small things that I used to take for granted had suddenly become huge victories once I had trained my mind to see them and celebrate them!

I hope anyone who is reading this is able to walk across their living room, tie their shoes, and take a bath on their own power… But, this principle can be applied to anyone. We all have days, weeks, or months that just seem overwhelming. We all have seasons in our lives when it is so hard to find joy in things or give reasons to be thankful… but make today a season of change!

Do me a favor. Start that change today, right now, and find ONE THING you are thankful for. Don’t just say you are thankful for your family, your house, or your friends, etc… Find something unique to THIS DAY that makes you happy. Look for some reason you’re EXCITED! Write it down, type it in your phone notes, post it on Facebook, or tell a loved one. Then, when that becomes a habit, increase the number you write down. I promise you, it will change the way you see things. You will start finding joy in the small things, and that will lead to a more positive outlook on life! 

Go out there and be POSITIVE, my friends! The world needs more of it!

A Story to Tell...

I have been tossing around the idea of starting a new blog, but I've decided just to re-invent this one. This blog started out as a way to update family, to help me cope by writing down what was going on, and with some hope that someone out there who is also struggling would have a story to connect with.

This time around, I'm focusing on the latter. I hope that by sharing my story, you can be inspired. You may not have a rare disease or chronic illness, but I bet you know someone who does. Even if you don't, trust me in that you can learn a lot from a girl who was running 90 mph and was forced to suddenly, unexpectedly, STOP....and try to make sense out of what a new normal is. 

For those who are new here, I'll give you the short story. If you stick around the rest of the story will eventually be told!

I was diagnosed with Guillain-Barre Syndrome in the summer of 2016. My recovery was slow the first few months after being released from the hospital. But, I eventually improved from wheel chair, to walker, to walking. (I skipped the cane- I hated that thing!) 18 months later I was driving, working, and walking. I still had a lot of nerve pain in my feet. It never really went away. But I was, overall, about 80% back to normal. Then....I had a relapse. When the ER doctor told me it was GBS AGAIN, I was in shock. I was told this wouldn't happen. I was mad. All that work, hours upon hours of therapy, only to find myself back at square one. The second time around GBS took a few more things away. My hands were in bad shape. I couldn't even tie my shoes. My vision went from 20/40 to 20/200 (legally blind) in 3 months. I experienced seizures and hallucinations during my stay in the hospital. It was one big nightmare. 

I'm happy to say that I sit here typing this today and I'm in awe that my fingers are working good enough to type so quickly! My feet and legs are stronger! I still experience fatigue that I don't even know how to describe, but I can walk! My vision is still weak, but I have seen small improvements. 

I am a lot more than a stupid autoimmune disorder, so you will hear about things other than that! I am a wife, and mom to 2 crazy boys. We just recently moved out to  middle of nowhere, and are homeschooling (sort of-more on that later) our boys. I'm finally to the point of healing where I'm ready to figure out how my dreams and visions can become a reality with my new normal. The combination of all that will surely provide some quality stories! 

I hope you will join me as I share a glimpse into this crazy life I call mine! I feel like I have been given a story to share, and I'd be honored if you followed along with me!

Fight to the finish

I haven't updated this blog since August. I'm a little mad at myself for not keeping up, but I have given updates on Facebook, so I at least have that.
It has been 8 months since I was diagnosed with GBS. I've learned a lot about my body in those 8 months, but I still feel like I can't trust my own legs. Because GBS is so rare and effects everyone so differently, the doctors told me they didn't really know what to expect my healing time to be, but to expect at least a year. So, in my head, I would be back to Ashley in one year. We are 4 months away from the one year mark and it scares me a little that I'm not closer to be back to "normal." I've come a long way, but I never know what to expect day to day.
I challenged my friends and family to walk/run a mile on Rare Disease Day. I also challenged myself. It was a big deal to venture out and walk constantly for one mile. I was afraid I would fall, I was afraid my legs would give out, I was afraid that even if I completed it I would be hurting afterwards. It was an incredible feeling to finish that mile with my boys by my side. I had sore ankles and my feet were tingly, but it wasn't too bad. The pics of my friends, family, old classmates made my heart smile. It feels great to know I'm not doing this alone!
After I walked the mile, I thought a lot about what things felt like 8 months ago. I get teary eyed just thinking about how helpless I was. I couldn't even get in my wheel chair alone at first. I was surrounded by so many people loving me and encouraging me, but I still felt very alone because I knew no one fully understood what was going on. I didn't even know myself. I looked in the mirror sometimes and wondered how in the world my body deteriorated so quickly. Muscles that were there just a few weeks ago had disappeared. I couldn't even get a snack or a drink without having to ask someone to help me. I couldn't bathe unless someone was home to help me in case I fell or couldn't get out of the bath. I felt so helpless.
Fast forward 8 months. I walked a freaking mile unassisted! My legs look more like normal legs instead of chicken legs. I can drive, go to soccer practice, go up and down stairs! When fear starts sneaking in, I realize how far I've come and refuse to be afraid. I might fall down in public...I haven't yet, but I literally have nightmares about it! I came close this week when a kid kicked a soccer ball at me during practice. I would have been pretty embarrassed. But, I can live in fear and stay home, or I can suck it up and do a lot of the things I did prior to GBS and chance a fall that will more than likely be seriously funny story a couple days later!
I'm going to continue to challenge myself. I don't know what my body is capable of until I try. It's overwhelming trying to decide if I can do something or not. It is like living in someone else's body! But, I won't know until I try. Maybe 2 miles will be next on my list...my boys think I should try running instead of walking, but I do know that I am a ways from that happening! My legs feel like they have 30 lbs weights on them, so I will stick to walking for now!
When that one year mark comes it is going to be a day of celebration! I don't know yet how I will celebrate, but you better believe I will, and I want my body to be ready for some fun on that day!!
A HUGE shout out to my peeps that finished a mile for me! I'm surrounded by too many awesome people rooting for me to stop now....I'm going to keep pushing and enjoying every moment of life, and one day I'm going to look back and say I kicked GBS in the face!!

Week 11 Video Update

Jesus, Please Make My Mom's Legs Better!

I'm still plugging away with therapy. Right now, I'm doing some stretches, then I work on my feet, balance, and strengthening on several different machines. I can handle about 3 minutes on each machine before my feet start feeling like they are on fire! But, I'm making progress, building muscles, and learning to walk better. I have walked with a cane the past two sessions. It's a slow walk, but my posture is good and I haven't wobbled or fell yet!

I'm amazed at how much my littlest one, who was a major momma's boy, seems to have completely forgot I exist! He won't sit on my lap because he is afraid he will hurt me. He doesn't ask me to help him with anything anymore, he goes straight to dad! He has made several comments about how he wants me to get better soon so I can do fun stuff with him! Several weeks ago he randomly shouted "Jesus, please make my mom's legs better!"

I continue to have good days and bad days, both physically and emotionally. I have a strong support system that get me through the days when I get down and frustrated about my current situation. I'm hoping that the physical pain will be gone soon. It seems to be different for everyone. I'm thankful that I have most of my feeling back in my legs, but ready for the pain in my feet to be gone!

I think I am done with the wheelchair, which is awesome! I have used my walker when we go anywhere, which right now is basically just church and therapy. I get tired a lot faster, but it feels good to be a little more independent.

We start enrollment for the boys next week! I was sure hoping to be walking independently by the time enrollment rolled around. It doesn't look like that will be the case, but I will just have to set a new goal!

As always, thank you to my prayer warriors and encouragers! I'm blessed to know so many people who check in on me and are constantly reminding me that they are praying for me.

One month

Here we are, one month into this whole GBS thing. 

I've had two therapy sessions and will continue to go twice each week. They are unsure how long I will have to go, like everything else with this syndrome it is different for each person. My legs are starting to look like a 9 year old girl. The therapist said my legs and feet were extremely stiff but they were impressed with my skills on the walker! ;) I've had quite a bit of practice maneuvering through the house.

Good news: I haven't been to the ER since my last post!

I went to a new general practitioner to work out my pain managment and blood pressure meds. So far,  with new meds I have been able to keep my blood pressure at a safe level. This is a major answer to prayer because it was getting dangerously high. I've seen so many different nurses and doctors the past month. Of course, the first thing they do is take your vitals. I always warn them that I typically have high blood pressure. I usually just get a quick "ok"....then they take it and start freaking out and taking it in different ways trying to get a lower reading. But, the week before last it was beyond high, when I saw a reading that was higher than what I had when they sent me in for an emergency C-section with Oliver....I knew I was in trouble! Luckily, the ER can usually get it down within an hour or two. But, it's even better to just keep it down with medication at home. I can't afford to go to the ER 2-3 times a week! So far, so good! I shouldn't have to stay on the extra meds after this is all over. This is just an extra "ooooph" while I'm dealing with the nerve pain, stress, therapy, and all the other fun stuff GBS brings!

We have had a meal prepared for us every other night from someone in our church since I was in the hospital. It has been so nice! We continue to receive encouraging words, cards, boxes of goodies, and people offering any other help we need. We appreciate it so much!

August will be here soon, you know what that means?! Back to school! I'm extremely nervous that I won't be walking/driving/half normal by the time the boys return to school. I want/need to be able to help with drop-off/pick-up. My own schooling is still up in the air. I'm just playing the waiting game to see how far I progress by the time it gets close. Time will tell!

Expecting a great week of therapy and progress!