Friday, May 13, 2011

Adjusting to a new life

The last 3 weeks have been full of adjustments for me.  I posted all about my flare during my last post.  I really thought things would be much better now.  Usually, my function has more than 50% returned by the time I finish the oral steroids.  This time, nothing.  My right leg has been paralyzed for almost 3 weeks now.  My whole life has changed in the last 3 weeks.  I can't do things the same way I used to.  I have to be careful about where I park or I can't get back into my van because there isn't enough room for the wheel chair ramp.  I can't go to the grocery store by myself.  I can't go to the fabric store by myself.  That is the hard one for me.  I love going to the fabric store and picking out the fabric for my next project and getting all the notions.  Joann's, the fabric store I visit most, is hard for me to get around at all.  It's a small, cramped store and my wheel chair doesn't even fit down all the isles.  I have to take one of my kids with me.  Rachael likes to go, but Andrew just complains and Jeremy isn't big  enough to be much help.  I can't  go over to friends house very easily because I can't always get into their house.  I can't just run into 7-11 for a drink.  I've been  really trying to just take things one  day at a time.  I've been trying to do as much as I can to keep some of my  independence.  I know when my mother in law had to go into a wheel chair, she had a hard time too.  She and I are both very independent people.

Tonight, I just about had a total break down.  I usually use the walker to get from the car to the house and just drag my leg.  This evening, I had a few bags of groceries plus my dinner and  no one else was home, so I thought I would take the wheel chair in so I could get everything in.  Big mistake.  I picked up a new wheel chair tonight, and it doesn't "off road" as well  as the one I've been borrowing.  Trying to get up on the side walk, I  got stuck.  The front wheel was against the side walk side ways and the power wheel was off the ground.  I tried to stand up and pull  it up, but it didn't work.  I called every person I could think of that lived anywhere close to me.  I don't know a lot of my neighbors very well.  We mostly just say 'HI" in passing.  I don't have any of their phone numbers except  my next door neighbor on the right and she was pulling out as I pulled in.  No one I called was home.  I had to walk and drag my leg over to the neighbors on the left.  No one answered at first.  I got all the way back home and they came out-they had been taking a nap.  He was able to get  the wheel chair unstuck and back into the van.  One of my closest friends, and the person I called first, called me back as I was coming into the house.  I broke down and cried hysterically.  I still start to cry every time I think of it.  Just that small ordeal totally exhausted me.  My leg is in spasms from the extra activity.  I just hate this.  I have known since I was first diagnosed with MS that I had a higher chance of ending up in a wheel chair.  I just didn't think it would happen so soon.  I thought I would have 10 or 12 years before a wheel chair was necessary and I thought it would be a little more gradual.  I'm still holding onto a little  bit of hope that I will get some function back.  It may just be denial though.

I have a few new jobs lined up.  I"m excited about them.  I've been asked by an old high school friend to make a few ruck sack style back packs.  I made a prototype for myself to make  sure I had the pattern correct (I made the pattern myself from a photo).  Now, I am working on hers.  It's a nice, big back pack and carries a ton of stuff.  There are also lots of pockets.  Jeremy's occupational therapist wants one too now.  I am also going to be making a quilt for one of the other VIR moms.  I may let the things in my  Etsy store expire and just make things custom for friends and family who request things.

Jeremy has decided he wants to learn to sew.  He wants to make a book bag for his cousin.  We did some embroidery together on it and now we have started sewing it together.  I'm going to be doing  some sewing with my cub scouts next year when they are Webelos.  This will be good practice for me to teach boys how to sew.  I hope the other boys are as excited as he is.

Tuesday, May 3, 2011

Already missed

Well, I was planning on posting at least once a week, but I've already missed.  I have a good reason though.  My monster of a disease, also known as multiple sclerosis, has shown it's ugly head again.  I was really hopeful that the Copaxone I have been switched to would be effective faster than expected, but that is not to be the case.  I am currently having  the worst MS flare I have ever had.  It started 10 days ago.  I woke up with my hip flexors feeling a little weak.  I could still walk normally, but I felt it when I stepped up.  It just seemed to take a little extra effort.  This was the Friday before Easter.  We had a normal Easter weekend, including an Easter egg hunt on Saturday.  Things were still  the same on Monday when I went to physical therapy.  I asked my therapist about it and he assessed my hip strength and he said it was just a little  bit weak.  He gave me soeme exercises to start doing at home.  Tuesday brought more weakness though.  I sent my neuro an email about it and by the time she got back with me, my entire right leg from the hip down was paralyzed.  I can't even take a step on my own now.  I was so not ready for this.  My neuro got me started on IV solumedrol right away.  However, it didn't help at all this time.  I usually get 50% or more of my function back from the IV steroids.  I didn't get anything back this time.  I'm on an oral taper right now and still  no improvement.  I have to go get an MRI tomorrow.  I'm hoping they can find where the problem in on the MRI.  I'm also hoping they can do something about it.  I can take a few steps if I pick up my leg by my pant leg and make it step.  Other wise, I'm stuck in a wheel chair.  I'm grateful that I have access to a handicapped van, wheel chair, walker, etc without having to wait to get all of that stuff.  My mother in law left her handicapped van to us when she passed away.  Stan's grandma has been using it for the past 2 years.  I feel bad we had to take it back from her, but Beth wanted to make sure I had it if I needed it.  I'm trying to cope the best I can, but it has been really hard.  I will be the first to admit that I am scared.  I'm scared I'm going to be in a wheel chair for the rest of my life.  I don't  feel  like I can take care of my family the way I want to either.  I'm glad my kids are older and can help me out around  the house.  I don't want to put extra stress on them.  I'm suppose to be the mom and I'm suppose to take care of them.  They are my life and I love them dearly.

Rachael is getting ready to officially graduate.  She won't have an actual graduation since she is homeschooled, but she will be considered graduated.  She has been taking some classes at ACC for the last 2 years.  She will start college with 26 credit hours.  We went to a local art museum with a beautiful garden a few weeks ago and took some great pictures for her senior pictures.  They turned out so good.  I'm pleased with my work, if I do say so myself.  I"ve been trying to load them onto FB, but I keep getting an error message.  I"m going to try to put them on here now and see if I can get them to load.  My daughter is so beautiful and she is so photogenic.  If she was taller, she would make a great model.  She isn't  interested in modeling though.  She only wants to dance.

Speaking of dance, her very last VIR show is this Saturday.  She has a solo in the show.  I"m really excited to see the show.  I love watching her dance.  If your in Austin and want to see a good show, it is at the Carver at 2pm and 7pm.