After returning home from my last hospital stay here locally, I rested up for a couple of more weeks and then decided I wasn't going to get stronger and better if I didn't follow doctors orders and go to Physical Therapy. I was dreading this because I don't like meeting strangers and having to explain my story, or I didn't at that time. I finally settled on Concentra because they had an Occupational Therapist and a Physical Therapist under the same roof.
Physical Therapy, this is where the fun begins. I hated being there, I hated having to tell the therapist my story, I hated having to tell him what CIDP was and that I had trouble walking and that I refused to wear my AFO's and I hated everyone and everything. I didn't want to do a balance test and a walking test and didn't want to lay on the table for him to stretch out my legs and muscles and I hated getting on the stationary bike to build that strength because I was already short of breath and everything he made me do made it hard for me to breathe and I will NOT show my weaknesses until, the day I fell during therapy and couldn't get up. My Physical Therapist became my hero that day. It wasn't anything big, but just the way he handled the situation and let me know that it was okay. I started to enjoy going to therapy after that and got rid of my poor attitude and stubbornness. My therapists name was Bob and he was the BOMB. Although, there were those moments I would finish up with an activity he had me doing and he would just sit at his desk on his computer, Im sure he was working, but I'm your patient right now, I am the one paying you, pay attention to me and let me know what I need to do next. My PT visits would end up being an hour and a half to two hours long and I loved it. Bob was entertaining and always making us laugh, I loved his personality. If you live in Austin and ever need a PT, look up Bob Carl at Concentra in South Austin, you couldn't find anyone better.
I wont even get into the Occupational Therapy part of it because that was the most boring, dreadful therapy ever. Nothing fun or funny about it. If I thought I could have made it without OT then I would have skipped it all together, but I can say it helped tremendously.
I attended PT and OT from Mid-April to the end of July. Once June rolled around I found out that Bob had cancer and by August he would no longer be there for at least 3 months so that he could receive his treatment in Houston at MD Anderson.
This is me with my new Therapist, Cierra the receptionist and my Occupatinal
Therapist.
I continued going to PT and had a different therapist, but it just wasn't the same. I have a short attention span so, if you don't make it fun, then I lose interest. I decided to skip the month of August and focus on work and I would come back later, that never happened.
August 1st, I attended the Younique convention. Remember those AFO's I said I refused to wear? Well, after enough falls and pleading with my PCP, I decided to start wearing them. Younique is a make-up line that I decided to start selling for extra income and they had their convention in Grapevine at the Gaylord Hotel. Two days of classes and demonstrations and meeting new people. I had started wearing my AFO's mid May and I had decided to stop wearing them this weekend at the convention. I did NOT want to look like the handicapped person I thought I was. See that, I "thought" I was handicapped. After this weekend at the convention, I realized that my foot drop was going away, it was not as pronounced as it had been in the past. Those weeks of physical therapy had paid off too, my legs were stronger and my balance was back to normal. August became the month of new beginnings. I ditched those AFO's after that weekend and to this day they sit in the trunk of my car. I never went back to physical therapy because I could see that I was able to do this on my own. Since then, it gets better and better on a daily and monthly basis. I still want to go back to PT for one last test to not only see Bob and how he is doing, but also to see if I score different on my test than when I first started. I know I will, I just want to see how much has changed and how far i have come along.
September 5, 2014: This is my 6 month post transplant birthday and this brought another exciting milestone. Here is my facebook post from the day before...
Ok, I did it. I finally dusted off my bike and went for a ride. I haven't been on it in about a year and a half to two years. I wasn't able to keep my balance in order to throw my leg over the bike, this time last year I wouldn't have been able to open my hands wide enough to grab the brakes. I also didn't have the strength to push the peddles, but tonight was a different story. I was able to do it all. My ticker still works and got a good workout, my legs were crying to come back home, but my body was a trooper. Tomorrow is my 6 month post transplant birthday and this is how I celebrated.
That was one of the happiest days so far since my transplant. I haven't been on my bike since then, but to know that I can do it is an accomplishment. Now I just need to motivate myself to ride it more often and make it a habit. I bought that bike 7 months before I got sick so, it broke my heart to see it sit in the garage and rot. I almost sold it a couple of times so maybe someone cold get some use out of it and because I could have used the money, but each time I talked myself out of it because I was determined to get back on it one day. I was not going to let this disease win.
Over time throughout the month I noticed I was getting better and better at balancing on one foot. Before the transplant, just barely lifting my foot off the ground would throw my balance off. Now, I can get dressed and put my pants on, one leg at a time, without leaning against the wall for balance or sitting on the bed. It took me 6 months to get to this point and I am feeling human again.
I was supposed to go back to Chicago at the beginning of this month, September, for my 6 month evaluation, but I put it off for another month. I wanted to go back when my friend Brenda was going for her one year evaluation. Plus, Chicago is prettier and much more pleasant in October.
September 30 - October 4: Chicago and my Evaluation
September 30th: This day started bright and early. I scheduled a 6am flight, we would land in Chicago at 8:30am. I figured that would give us the day to play and explore, but it didn't work out that way. A few days beforehand I have received a call from Nicole Peters, Dr. Burt's assistant, asking if we could change my appointment with Burt from Wednesday to Tuesday the 30th. Ok, no problem, that would just give us the following day to do whatever we wanted. We, my friend April and I, boarded the plane and patiently waited, and waited. They were having issues with the plane so they decide to make us get off the plane and catch a new flight. Fortunately for me, my flight took off at 6:30am and we have a layover in Nashville and then on to Chicago. I go to Chicago at 11:30am. Unfortunately for April, she couldn't catch that flight with me because she had a conference call that she had to be on at 10:30am, there was no way she would be able to be on that call if she would have caught that next flight with me. She settled on a later flight, I cant remember when it was supposed to leave, but I do remember she was supposed to land in Chicago at 3:30pm. Well that didn't happen either, I can't recall the circumstances that came about, but she didn't show up at the hotel room that night until 11pm. Talk about a long day for both of us considering we got up at 3am that morning.
After I had landed at 11:30, I met up with Brenda and we caught a ride to the hotel where we ran into Donna Hightower and her husband. Donna received a call from Paula at Dr. Burt''''s office and we were all three told to come on to our appointments. I had missed my scheduled time because it was set 11am and I was still on the plane at that time, but Dr. Burt is so awesome at fitting you in whenever you can get there. He cares so much for his patients and loves his job, he makes adjustments when needed.
Donna went on ahead of me and Brenda, but we weren't far behind. I was the last to be seen by Dr. Burt, but once I got back to the exam room and he walked in the door, I asked him if I could give him a hug. He smiled and of course let me and I gave him the biggest hug ever with a big fat Thank You to follow and told him I felt like a million bucks. I then gave Paula a hug too and let them know I was so grateful. I know Dr. Burt lives for these moments because it shows him that he is doing good and there's a purpose in what he does. These are the reasons he does this research for stem cell transplants. I got a good check up and Dr. Burt said I could just expect to continue getting better, I told him that I did expect that and knew that i would continue on the path that I'm on. I also told him and Paula that hopefully soon they could expect a video of me running.
After our appointment with Burt, Brenda and I had blood work done and then met Donna and her husband at Pippen's Irish Pub and ate the BEST hot dog ever in the world. I ordered the charred cheddar dog Chicago style along with cheese fries and an ice cold beer. A great meal after getting a great report from Burt.
After returning back to the hotel and waiting on April to arrive, I rested up some, but decided to go bother Brenda, I figured this may be the only chance to have "us" time with nobody else around and give us a chance to get to know one another better. We laid in the bed telling our secrets and laughing and had a great time talking. I was getting tired and knew April was about to be there so I went back to my room.
Wednesday, October 1st. At 10am we had a meeting with Chicago Greeters to get a tour of Chicago. This is a pretty cool thing Chicago offers, it's free and they give you a 2 to 4 hour tour of anything you want to see. You have to be a visitor, you cannot be a local, and it is given by a local who volunteers their time to tell you about their wonderful city and the many things it has to offer. We got a tour of the loop, saw some pretty cool stuff and enjoyed our day.
Later that day Brenda and I met up with Jessica, the photographer that snapped a few photos of us at the Rosebud back in March. She generously took our pictures for us t no charge. Like I said before, she has a heart of gold. Here are some pics she took.
Thursday October 2, 2014 consisted of going back to the hospital to have an EMG and NCV test. This is not a pleasant experience. The NCV consist of them sticking electrodes on you and zapping you with little shocks of electricity to see how quickly your nerves relay the message. The EMG is the same thing except they stick a tiny needle into your muscles. This test hurts, not too terribly bad, but enough to get you very agitated.
Once I left the hospital I was on my own. Brenda was about to have hers done, Donna was out doing her own thing and April stayed back in the hotel room to work. I decided to take this time to do some roaming around on my own and take some pictures.
After having my little chat with God, I went back to the hotel room to meet up with April and figure out what we were going to do about dinner. The winner that night for dinner, Jake Melnick's. Home of the best wings in Chicago.
Friday October 3, 2014
After the EMG and NCV test yesterday, I had to go back to see Dr. Allen to discuss the results and answer a bunch of questions regarding what I can and can't do on a scale of 1 to 5. I also had to get up out of a chair and walk to a point down the hallway and back and they timed me to see how fast I was compared to last time. Significant difference for the better this time around. Dr. Allen told me that he could see great results with the EMG (muscles) and only a slight change on the NCV compared to last years results. He did explain though, it doesn't matter what the test results say, what matters most is how I fell and how I'm doing. I let him know I was feeling great and doing perfect. He was not as encouraging as Dr. Burt was. He told me I may not see anymore changes and that I may not get any better than I was at that point. I think maybe he didn't want me to get my hopes up, you know, use a little reverse psychology on me. That doesn't work with me. I know in my heart that I WILL get better, but I told him that even if I didn't, I was happy with my results now and anything beyond this would be a little bonus.
That evening me, April and Donna went back to Pippen's Irish pub for another hot dog and a drink before meeting up with Brenda and Donna's husband to go to the top of the Hancock tower for cocktails. We figured our last night there deserved a special treat and this was just the place. We found a spot right in the corner of the bar with great views of downtown Chicago all lit up.
I have no idea how I was able to get those two pictures to connect like that, but it looks pretty cool. That bottom picture is Donna, Me and Brenda. Oct. 3, 2014 Stem Cell Sisters for life.
Saturday October 4, 2014
Our last day in Chicago and it was cold. I believe it was around 42 outside and raining. April and I slept in, took our time getting ready and packed up. We had a lunch date with another HSCT patient, Scott Hucks. I didn't bring a coat with me because I didn't think it would get cold enough while we were there so, we stopped at the H&M store to do a little shopping, oh darn it, lol. I found a coat, a sweater and I was good to go. Off to meet Scott, his girlfriend Heather and his brother Luke. Can you guess where we met them? That's right, Jake Melnick's. This has become my all time favorite place in Chicago to go for good food and drinks.
You go Scott, kick MS to the curb.
Back home and back to daily life. The weeks and days passed and on October 24th I had to run down the driveway after my 2 year old granddaughter. Wait, what? Did you hear that? I RAN. It was by accident that I found out, but I did it.
My facebook post on October 25th: 2 1/2 years ago I acquired an autoimmune disease that made it impossible to run, heck even walking was hard. In March I had a stem cell transplant to restart my immune system and gave me a new one. Today at almost 8 months post transplant, here I am running. Not perfect, but way better than before the transplant. For those of you who wonder why I had the transplant or wonder if it was worth it, YOU BET. Watch and decide for yourself. Stem cell transplants work.
