Tuesday, August 9, 2011

It's been awhile....

...since I posted last.  This summer has been a bit of a struggle.  I'm still feeling my January attack.  While my legs are less heavy, they still aren't "right".  Walking long distances (like around the mall) is very tiring and sometimes overwhelming.  I still have numbness that comes and goes in my fingers and toes.  Finally, my bladder is crazy.  I have to urinate frequently and have been getting up 2-3 times a night to "go".

I'm still taking the Avonex.  I don't get the flu like symptoms too badly, if at all.  Each week is really different.  Mostly it seems to make me tired and lazy for at least the first 24 hours after injection.  The terrible and stressful part is that my hair is falling out.  It's been coming out since the beginning of July.  My neuro says it will stop, but it's not and it's very stressful.  I got about 3 inches cut off but it still looks terrible.  I went on-line and this seems to happen with the beta-interferons (so Rebif and Avonex).  It also happens with Copaxone (which isn't an option for me because my neuro said that it does not do anything to slow the disease) and Tysabri.  So, it seems that I'm just screwed.  I am using Nioxin shampoo and conditioner, which is supposed to help hair growth.  I also take extra zinc and biotin.  There does seem to be new growth, but it's still falling out.  I really dread washing it because it's a horrible sight to see all the hair around the drain and then in my hairbrush.  I see my neuro in a couple of weeks so we'll see what he says.  

I've eased up on my rigid eating a bit.  I was gluten, dairy, egg and legume.  What I was going to eat was really stressing me out.  It was really a challenge to keep shopping for and cooking appropriate meals.  I'm adding some bread (all natural, no oils or preservatives) at lunch for a veggie sandwich.  I also added some beans to eat with rice.  I actually feel better as I have more energy.  I really want to focus on low to no saturated fat, as Dr. Swank prescribed for his patients.  There is a great program created by Dr. McDougall, who is continuing Dr. Swank's work. You can heck it out here:  http://drmcdougall.com/free.html

It's time to begin thinking about going back to work.  Remember that I'm a teacher and have been off for the summer.  I'm always happy to go back in September, as I'm usually ready to get busy and have a routine again.  It's more bitter-sweet this year.  It's nice knowing that if I don't feel well, I can relax a bit and not have to worry about the "what if's" of the disease (what if my legs give out while walking down the hall at school).  I know, I need to stop worrying about "what if's".  They'll make me crazy.

1 comment:

  1. Hi Karen. I am so sorry that your hair is falling out. It's bad enough that you have MS and have to take medication... right? I have just finished reading George Jelinek's book. I think he puts forward an interesting case for diet, but in the end you have to live your life - so you have to do what makes you happy and feel right. I have recently blogged about him and his diet. Check out my blog. Good luck at work! Hope to read your next post soon.