Fight of the Syrinx

Baby Steps!

Moving

My room in rehab

If you haven’t ever had the pleasure of visiting an In Patient Rehab facility let me explain what they are. It is a unit inside of the hospital where patients are re-taught how to live and cope with their new disabilities. In my case I was relearning how to walk and function as a mom and wife. They are very similar to Nursing homes in the fact that everyone has their own home like room and is encouraged to go to the communal dinning room for all meals. It is mostly elderly people in these units but there is the odd case like myself that end up there.

When I got to In Patient Rehab a couple things happened. I got my new room, which had an amazing view of the garbage incinerator for the hospital. Then I got my new wheelchair and walker. My bed and wheelchair came with alarms because I was a fall risk. All of this plus the fact that reality was starting to set in triggered the mother of all breakdowns.

Up until this point I had not shed one tear for my loss of mobility. I try to always have a positive attitude, hense the name Chronically Happy Ciera😍.  But at this point I just couldn’t keep up the facade, so alone in my room I cried. Grieving the life I use to have and fearing the life I still had ahead of me. I cried for hours, literally hours. I was expelling all the emotions I had kept locked up over the previous 2 weeks.

Dinner Time.

When it was time for dinner I was wheeled to the dinning room so I could eat with the group. I was still crying at this point, and getting all sorts of looks from the other patients around me. So as I sobbed into my giant dinner, I was stress eating, I see my dad walk in… His eyes met mine and he smiled a sad smile, and hugged me as I cried even harder. We sat like this for awhile, finally I was able to stop crying and eat my huge meal.

Then my little sister walked in and I smiled a genuine smile.  That night I went outside for the first time since I came in for my original surgery over 2 weeks ago. The cold November air chilled my skin, and helped me to remember that there was a world outside of the hospital and my sad little room. We “played” a game and my dad and sister wheeled me around the lower level of the hospital, which turns out is pretty creepy at night. What started out as an awful day ended very nicely. (The video below is me getting to go outside for the first time).

Day one.

I woke up the next day bright and early so I could get dressed and freshened up before heading to the dining room for breakfast. That morning I put my own leggings on for the first time since the surgery, and wow that in itself was a workout. I had to wrestle my limp left leg just to slip my foot in.  The CNA came in and wrote down my Physical and Occupational schedule for the day and wheeled me out to breakfast.

For the past 2 weeks I had been laying in bed, my big effort for the day was sitting at the edge of my bed, Woo Hoo! So rehab was a bit of a shock to my system. I had two, one hour sessions of physical therapy. And two, one hour sessions with occupational therapy.  I was exhausted but I was SO happy. That was the first night that I slept through the whole night since being in the hospital, and it was glorious. (The video below is a few days into my rehab stay when walking was not an easy task, feel free to not listen I am talking about my legging and shoes 😂 you know the important things).

Getting in the groove.

The next day I woke up got dressed, got my schedule and went to breakfast. i was really liking having a little routine back in my life. My first physical therapist really focused on just walking and relearning to walk stairs. One of the first things she had me do was a six minute walk test. Which is where you walk for six minuets and they measure how far you walk. I walked my little heart out for that test, and in the end I had walk 90 feet in six minutes. I was both happy and sad. I was happy because hey I walked 90 feet which is better than the 0 I was doing the week before. But also sad because it was 90 feet, that’s 15 feet a minute. Michael was with me and he was SO happy and his happiness rubbed off on me.

My first occupational therapist really focused on showering and dexterity. I was not sad at all that on of my therapies was to taking a shower. My first shower “alone”, therapist was outside the curtain , I turned the shower on to what I thought was a good temperature and pushed the head off to the side so I could wash. Well I looked down at my legs a few minutes later I saw my left leg was bright lobster red. I felt the water and it was scalding hot! Thankfully I didn’t do anything worse that a mild burn. But it made me realize I would have to be careful about everything since that leg had zero feeling.

My next week in rehab really got interesting. I was pushed in new ways as the hospital staff got me ready to go home.

 

 

4 Comments

  • Linda Brooks

    As I read your blogs, the same 3 words keep popping into my head, you’re so brave. And courageous, strong and positive. I love you Ciera.

  • Cindi Fleming

    Hi Ciera. I am a friend of your MIL Debbie, from CA. I knew Michael when he was younger. I am so amazed at your will and positivity. I too have fought a battle. So many similarities. CIDP. I lost the ability to walk and was hospitalized for a week. It’s been 7yrs and I’m in remission. I was on treatments for every 3weeks for 4days 3hrs a day for 7yrs. I have regained my feeling and depth perception but still symptomatic at times. Nothing is worse than having no control over our bodies. I used to repeat over and over “I may have this but it doesn’t have me”. You are so strong and determined especially with such precious babies and loving husband. It definitely changes life but moving forward is still the only way to go. Just wanted to say you’ve got this and you are stronger than you’ll ever realize!

    Always Cindi

    • ChronicallyHappy

      Cindi, Thank you SO SO much. Like you said being positive isn’t always easy, but it really does help. I am so happy that you are in remission, I hope it stays that way!

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