When my physical therapist let go of my foot, I was able to hold my foot up. He massaged my leg and then asked me to raise up my leg…and I was able to do it! I was ecstatic! Finally, I was getting movement! I asked him if I could try standing up and at that point, he decided that he had to have a heart to heart talk with me about how I would need to learn how to walk again and how much of an uphill battle I was still facing, and told me that I needed to take things slow. I laughed at him and said “You don’t know me very well! When I put my mind to something, I won’t stop until I’ve accomplished it! I WILL be walking out of this hospital THIS week! Just watch!” Since I was able to now lift my legs a little bit, I figured it would be a cute idea to make a video of me kicking Mike in the leg to show everyone what I could do. This was so huge for me! I couldn’t wait for my next PT session. My Dad came to visit me and we were talking about his birthday coming up. I asked him what he wanted for his birthday, and he said “I want you to walk again!” Since his birthday was on Friday, I knew that I was going to have a lot of work to do, but I was determined to make it happen! That night, Mike took me into the bathroom and I wrapped my arms around his neck. He put his arms around me for support….and then I stood up! I couldn’t tell PT about this new accomplishment because they would take away Mike’s “privileges” to help me transfer from my wheelchair to the toilet or the bed. However, just knowing that I could do it was enough to make my whole day!
Tuesday morning came and I was determined to make more progress. Unfortunately, all of my physical therapists wanted to take things at turtle speed and I was ready to run marathons! I knew that I would have to use psychology to trick them into allowing me to push. With every “No” that I got, I became even more determined. I talked my physical therapist into allowing me to try to stand. She took me over to a set of bars that I could pull myself up with and she had my wheelchair behind me and she was in front of me to support me, in case I fell. I stood up and was able to shift my weight back and forth on each foot. I asked her if I could try walking. “Noooooo…..that is way too soon and no one is behind you to catch you if you fall!” I reminded her that I did have my wheelchair behind me and I had her to catch me, so I said “How about JUST one step?” She sighed, knowing that I was not planning on giving up until she agreed, so she said “Ok, ONE step!”
I was nervous. I knew I could stand, but what if my brain wouldn’t let me walk? I closed my eyes, said a quick prayer…and then took a step! “You did it! Open your eyes!” I begged her to let me take another step so that I could see it. She let me. I asked if I could use a walker to take a few more steps. After all, I would have the walker to support me and she could be behind me if my legs gave out. She got the walker and held onto the support belt that was wrapped around me. I pulled myself up from my wheelchair and I took a few steps. I can’t even put into words how excited I was! Mike hadn’t arrived at the hospital yet and I wanted to call him to tell him, but figured that him seeing it in person would make his day. So, I kept walking around the “gym,” having to take breaks, as my legs were still really weak. Once Mike arrived, I showed him that I could walk with the walker. He was as excited as I was! My physical therapist wanted me to rest, but I wanted to push harder. With Mike being there, I would now have two support people who could catch me if my legs gave out, so I talked her into letting me walk around the rehab floor.
I walked around as much as my legs and my aching back would let me. One thing that I didn’t anticipate was how much pain that I would be in once I was up on my feet. I jokingly said that it felt as if I was 20 months pregnant, but the reality was that my back was in intense pain, which drove down my cortisol levels quickly. I was told that this was a side effect of the paralysis. I also had shooting nerve pain that went from the bottom of my leg all the way up and across my lower back. Keeping the pain under control had already been tough, but once I was up on my feet, the pain was even stronger. I knew I had to be careful because even though I wanted to keep pushing, I knew that I was risking lowering my cortisol levels to an unsafe level.
The nice thing about the evening meds was that I was able to ask for more hydrocortisone when I felt like I needed them. I decided to take extra hydrocortisone because of the pain, but I also had a plan. The night shift turned out to be very busy for the nurses and CNA’s. I knew exactly when I would be checked on, and I made sure that I had enough broth and water to keep my electrolytes up. I waited until I got my pain meds and then I decided to use the walker to walk over to the door to close it. I then went back to my bed, but I didn’t sit on it. Instead, I moved my walker over to see if I could take some steps without it.
I walked over to a chair in my room and then back to my bed. Success!!! I then walked from my bed to the bathroom and then back to my bed. I was doing it! I was walking!! I had to take a lot of breaks because it was causing pain, but I figured that I had to take the opportunity to do as much walking as possible. Every time I was checked on for more meds or to take my vitals, I spent time relaxing in bed. I was wearing compression socks and my legs were hooked up to a machine that helped with blood flow. My doctor said that my legs were carrying at least 20 pounds of water weight in each leg, so that made walking even harder. I not only had the water weight in my legs, but it had spread throughout my body, making it harder to walk because I wasn’t used to the extra weight. I continued to walk around my room most of the night.
Wednesday morning, my physical therapist came in. She was my first physical therapist I had had and the last time she saw me, I was crying because I couldn’t move my legs. She gave me a huge hug and told me how happy she was to hear about my progress. “I want to walk today…without my walker!” She looked surprised and tried telling me that I wasn’t ready for that. I winked at her and said, “Trust me….I CAN do it!” She gave me a look like she instantly knew that I had broken the “rules” and started laughing. “Ok girl, show me what you can do!” She put my support belt around me and then had me walk from my bed to the chair. My legs were a lot stronger from the night before, so it almost looked like I had been walking for a long time on my own. “Wowwww….ok then!” I told her I wanted to walk to my doctor. Dr. Nicocio was up at the front counter, like he was many mornings. I walked up to him and said, “Hey Doc! Can I go home now??” He was floored, in a good way. He looked over at my physical therapist, almost as if he was asking for her permission but also wondering how on earth I was walking. He then said “Ummm….well…how does tomorrow sound?” “I’ll take it!!” He then did a few exams on me to check things out. He said that he would need to get everyone to sign off on me going home. I asked him for one favor. “I know that the rules of the hospital are for me to be wheeled out of here to my car when I’m discharged. I’m begging you to let me walk out of here…on my own!” He gave me a sideways smile, and said “I’ll see what I can do.”
Wednesday, I had to spend the day passing tests in order to go home. My occupational therapist’s test was the hardest. She took me outside to take a walk on unlevel ground and up and down stairs and sidewalks. I was in a lot of pain. This was a lot harder than I had anticipated. I kept having to take breaks and sit down for a while. There were a couple of times that I felt as though my legs were going to just give out but I didn’t say anything, in fear of them keeping me at the hospital longer. The pain got so bad that my cortisol levels started dropping rapidly and we had to go back inside for me to get meds and to relax. I was still on Cloud 9! I had my nurse make a video of me walking and I sent it to everyone. My new friend, Jennifer, in Tower 6, started crying. She ran around the floor, showing all of my former nurses and everyone who knew me the video. Later that evening, Mike wheeled me over to Tower 6 to visit the night shift, who wasn’t aware that I could walk yet. The first person we saw was Yaya. She was excited to see me, but when I stood up from the wheelchair and walked over to her, she started screeching. One of my favorite nurses was working that night. I showed her that I could walk and gave her a big hug. She laughed at how short I was and that she hadn’t realized it before I could stand up.
We went back over to the inpatient rehab unit. I ran into a sweet, older couple that I had spoken to a few times. The wife was there because of a stroke. They noticed that I was walking. They hadn’t known why I had been there, so when I told them that I was paralyzed less than two days before, they were blown away. The husband jokingly told me that I couldn’t leave. He said that I had the greatest spirit and I literally lit up the entire floor. He said that I had eyes that just went into people and made them feel good. I felt so warm about the nice things he had to say about me. As much as I wanted to leave the hospital, I had also grown close to so many people that I may or may never see again. I’ve grown to accept that mixed emotion, as I’ve had it many times. I normally do end up running into a lot of caretakers that I’ve had in the past with every hospital trip.
The next day, I was able to get everyone to sign off on my discharge. It was so surreal. I knew that I still had a lot of work to do to get back to the same physical condition I was in before, but I was so ready to go home. We packed up all of my stuff and I got my wish….they let me WALK out of the hospital! My journey did not end there. We went from the hospital to my chiropractor’s office, with hopes that he could help with the pain I had in my back. He has helped me so much in the past so I put all of my faith in his care. Although he did help, the pain would return the same day I saw him.
I spent the next several weeks trying to figure out why I was in so much pain. It took a huge toll on my emotional well being. I’m normally a very social person, but I ended up withdrawing from wanting to see anyone or even being on social media much. I was being proactive with my health. I found a new doctor that was committed to helping me with this journey of health. It was very encouraging. I also saw Dr. Nicocio again, and he suggested that I get cortisone injections in my SI joints. I got the injections and for the first few days, I was in a tremendous amount of pain. The doctor who administered the injections told me to expect more pain, and he also told me to expect that the first time I got the injections, it would provide relief anywhere from a few days to a few weeks. After the first few days, I finally woke up in no pain. It was amazing! I was able to cook and clean again. I felt amazing! For the first time in quite a while, I finally felt like I was returning back to “normal.”
Right before New Years, I got hit with the flu. I knew I had to double my dosage of corticosteroids, as the flu can literally kill me. After a couple of weeks, I started feeling better, so I went down to my normal dose of coritosteroids. However, the pain in my SI joints had returned. My dad came over to celebrate Christmas with us. We had all of the kids here. It was a good night, but I was in a great deal of pain, so I had to go soak in the bathtub a few times. Mike recognized that my cortisol levels were low, so he had me updose. I went upstairs and took another bath. I had time to think and realized that I was having low cortisol symptoms and that I should really have taken more corticosteroids than I had taken, so I got out of the bath and got dressed. My phone was downstairs so I could not text anyone to ask for more meds. Everyone was watching a movie, so it was loud. I started feeling dizzy so I sat on the toilet for a few minutes. I started to panic because I knew that I needed meds as soon as possible.
I started heading towards the door and then I felt it coming….it was too late…I passed out. Austin found me a few minutes later, unconscious. Mike gave me an emergency injection, while Taylor called 911. I woke up….but I couldn’t move and I couldn’t speak. Mike was yelling, “Jen, can you hear me?”
Tears ran down my face. I was scared. I couldn’t believe this was happening… again!!! I could hear Taylor on the phone with the 911 operator. She was asking if I was responsive. Trapped in my body again, all I could do was blink once to let them know I was ok and that I could understand….