16. Down the Hatch

So, in order to write this blog I must eat my words and those of you that know me well know how difficult that is. Here it goes:
I saw my MS Specialist last week.  The visit, in my opinion was not positive.  She evaluated my progress, asked me questions, blah, blah, blah...Then asked me if I considered her recommendation for treatment. I told her, as best I could, my feelings on the risk of Tysabri.  She looked at me and told me how many people she sees with MS and to all different degrees, but I am just unlucky.  Unlucky as to where it has  hit me and to what extent.   Wait a second, Im never unlucky.  This was just supposed to hit me mildly, resolve completely and leave me to go on to be the Poster Child of MS.  I was supposed to be able to treat this all naturally, run marathons and return to supermom status asap.  She used the words 'worried' and 'scared' and 'quality of life'....things you don't ever imagine hearing from your doctor.  She assessed my vision and is also worried that I will not regain sight in my right eye.  She excused herself to consult with another colleague and when she came back she let me know they both would support my decision to not use Tysabri, but disagree.  Her last attempt at changing my mind was another MRI.  With those results in hand, we could re-discuss tomorrow.

  The next day I had another MRI done, this time just of my brain.  The results showed no new lesions(for the first time in 3 or 4 MRIs).  Though, some of the old lesions were still active.  I think now I have the 6 or so on my brain, 1 on my Cerebellum, 1 on T3 and 'the big one' on the base of my brain.  As the doctor put it, she is more worried about the extent of disability from future attacks than she is about the risk factors of Tysabri.  So, yes, I will eat my words, put my life in her hands and try the drug.  Seems as though all this 'coming up smelling like roses' has run its course.... (Those of you keeping up, that's two down the hatch, Tysabri and Im in fact NOT lucky)

 So, We made the best of the day and spent what I had available on my new flowers and veggies.  I love them, cant get enough, filled a cart and a flat bed with all kinds of gardening goodies.  I perched myself on the back of the shopping cart and walked until I couldn't walk anymore(really only a matter of a half hour, but I did it).  The next day, with the help of friends and family we began transforming my back deck into my oasis.  I figure if that's as far as I can get this summer, I want it to be beautiful.  Besides, gardening is great therapy!

Next comes the outdoor furniture venture!  I cant wait, got to give myself something to look forward to.  Interspaced with all these (as a friend calls them) play projects  Im making the doctors calls and appointments and trying to push through this Tysabri.  Ends up its highly regulated and even more highly priced.  So, the paperwork and authorizations are quite an undertaking.  My greatest hope is that I don't get a new lesion before I can get on this medicine.  Its looking like it will take a week or two to get everything in order.  It is administered by IV infusion at a few certified clinics around the state.   I guess, once infused, it begins working immediately to prevent future attacks(80% effective).  Im  just hoping it doesn't hit the other eye, or worse, before then.  Because I really am doing better.  I can walk around(a little tipsy).  Im working with my PT to try and be able to walk like a normal human and not like a zombie. This loss of vision thing wouldn't actually be so bad if I could regain normal sensation in the right side of my tongue ,face and head.  It wouldn't feel like I have just half a head. I have sensation back in my hands and my arms are getting stronger.  I actually was able to make dinner last night for the family.  What a treat since my passion is, besides my children, being in the kitchen.  I made fresh ricotta cheese the day before and saved the whey.  So, I marinated some chicken in the residual whey, also cooked the wheat pasta in it.  Then I just added some fresh kale, tomatoes, garlic and white wine and mixed with the pasta.  Delicious.  Felt SO good to make my own dinner after weeks of prepared(yet really good) food.
  I also am able to dress my kids, do their hair, put them to sleep at night and keep an eye on them while they are playing quietly here at home.  Baths, feeding anything to do with running after them are still things to conquer.  If all else fails, wheelchair rides on my lap around the house seem to settle them. My oldest loves this new mom, for the most part.  She loves me home and to have me actually still do be able to do my nails and watch movies and such.  She is a huge help with the kids and around the house too.  I feel its finally the boost she needs to teach her responsibility and concern for others.  Maybe not quite the way I thought she would learn...  But that's life, not quite what you expect!!