Kickin' MS with HSCT

Oct. 25, 2013

Tuesday marked one month since I was discharged from the hospital in Moscow. I had my one month blood work on Wednesday and it was all still within normal ranges!! YEA!! I’ve stayed pretty close to the house during this month, and limited visitors as well, I really didn’t want to take any chances of catching something from anyone. With my still new immune system a cold could really be hard on me and set me back. The local doctor has told me if I get a fever to go straight to the ER, she takes this very seriously. So, as stir crazy as I’ve gotten, I haven’t gotten sick either. I’m starting to get out more, this week I’ve gone shopping with my sister and out to lunch the girls another day. So, I’m slowly getting out there but still be cautious.


I didn’t drive until last week, my legs were so weak I was afraid I wouldn’t have the strength to quickly change from the gas to the break in a timely manner. Trust me, you wouldn’t have wanted to be on the street with me driving. So after a test drive around the neighborhood, I felt ready to hit the streets, and that I did. So watch out Little Rock, I’m driving again.

I walk several times a day, walking my dog a few times and than every other day I add a solo walk for distance. I’ve done this since I returned and slowly walk a little further as it becomes easy. I’m now up to 0.6 of a mile, and last night it was getting easy, so it’s time to go a little further. This is the same distance that the walk was around the block in our neighborhood in Florida, and I had not been able to do that in a long time. (In Florida it was flat, here it is very hilly). If feels great, my legs feel weak, but not like I’m walking with cement blocks on my feet. And I haven’t felt that way in several years. Then on Sunday and Monday, it changed, the cement blocks were back. I was freaking out, was the transplant already failing? It’s only been a month. But then Tuesday I woke up and they were fine, so I’m on the healing rollercoaster of HSCT. I’ve been told by others that this is normal, especially the first few months. In the hospital the spasticity in my legs went away, this was a nice surprise. Usually in the late afternoon, it would start and by the evening it would become painful and you could see my legs actually jump from the spasm. When they went away in the hospital I was pleasantly surprised and every morning Dr. Fedorenko would ask how my spasticity was, I would reply, “What spasticity?” Well, that was nice while it lasted, it’s back. Not as intense as before, but still back. I take a magnesium supplement and it takes care of it, but hope it will go away again for good. So, my ticket has been stamped and I’m going to ride it through, all the bumps and loops that come my way.

Next week I start Physical Therapy, and can’t wait to see how that goes. I know just may walking has strengthened my legs, but they are still very weak. If I am on the floor, I have to crawl to something sturdy enough for me to pull up on, not a pretty sight. I don’t know what I’d do if I fell on one of my walks, there would be no way for me to pull myself up. OK, I need to put that thought out of my mind and just not fall. I’ve also started a Plank Challenge. If you don’t know what the plank is, check out this link, awesome exercise and easy to do. http://www.youtube.com/watch?v=kiA9j-dR0oM So, I can’t keep up with the challenge schedule, but I’m still doing it and able to add more time everyday. Never Give Up!!

My energy level is better too. When I first returned I had to take a couple of naps a day, now I start to crash mid day and take an hour nap and then good for the rest of the day. So, improvements are happening, slow and steady.

Thanks for everyone’s support and prayers. I’ll post again in a month and hopefully will have some good improvements to report.
VW
Fighter

Sept. 5, 2013

Just had to share this.

I was walking last night and noticed, my legs weren’t “heavy” when I walked. This is huge, because this is how my legs have felt for the past 4 years. Like I couldn’t take one more step because my feet felt like they had been put in concrete blocks. My legs are weak, don’t get me wrong, but it’s different. I was walking up the street to check out some work they are doing clearing for a new road, and walking up an incline and then walking around looking at the site and it hit me, I’m just walking, I’m not dragging my legs. I still am using my stick for balance, I have only been home a week and a half, but this felt so good. I know I must of had the biggest smile on my face walking back home. I know as my legs get stronger this is only going to get better. I have such hope!

These little things mean so much as I continue to heal and get stronger. The thought of being able to go walking with my husband or even explore all of the great hiking trails we have in our neighborhood. All of the possibilities.
VW
These Boots were made for walking…

I can’t believe it’s just a week and two days, since I was discharged from the hospital. It seems longer, maybe because I haven’t left my house except once.

Many have asked how I’m feeling. I feel great, considering what I’ve been through, just still weak, but that’s going to take time to build back up. I am walking outside regularly and last night went the furthest and felt the strongest I’ve felt yet. So, the walking is working, just taking it slow and easy. I still can’t seem to stay awake past 8:00 pm, but then wake up every couple of hours, so not sure how to resolve that problem. I really only nap a couple of times a day, for 45 min to an hour, so it’s not like I’m sleeping my days away. I do laundry and empty the dishwasher, so little things. I’m not supposed to clean, or handle raw meat, and I can’t walk Dottie, so some things Tom must do.

I did have my first outing this week, to the grocery store on Tuesday with my Mom. We were in desperate need for pretty much everything, and this is no exaggeration. So, Mom and I set out for the store, me masked up, antibacterial wipes in hand and ready for the adventure. (Mom did try to wipe everything down before it went into the cart, but had to stop her from that, they are just going to be touched by the check out and bagger, so what’s the point). Not to brag, but I did push the cart the whole time. 🙂 OK, that was also for balance, but just saying, pushing a loaded cart through a store is no small feat. We made it, bought everything needed, and only ran into one person we knew. OK, they recognized Mom, I was pretty much the masked, bald bandit, so no one would have known me. Anyway, good to see her again, it’s been years for me. We made it home, Tom unloaded the car, Mom headed home and I crashed for a two hour nap. It really took it out of me, more than I realized at the time. So, I had planned on making dinner that night, scratch that idea. Every man, woman, and dog had to fend for themselves.

I have my first follow up appointment scheduled for next Wednesday to check my blood work. So, we’ll see how I’m doing there. So, in the mean time, I’ll keep up my walks, naps, and continue to get stronger.

VW
“Ain’t No Mountain High Enough”