• Flickr Photos

  • Tweet with me!

  • January 2016
    M T W T F S S
    « Jun   Mar »
  • Pages

  • Meta

  • Advertisements

A new me

Dealing with a disease that is not fully understood by the medical profession has its challenges.  It will be 7 years next month.  7 years of living with the diagnosis of MS.  I think I have been hospitalized 4 times.  I think, it has been enough that I do not remember clearly.  I finally realize that I have been putting myself in the hospital.  Which really makes me wonder if the drugs that they have me on are doing anything for me.

How do I put myself in the hospital you ask.  Oddly it is by doing the things that we all know we should do or do more of and that is exercise.  For years now I dread the coming of summer.  The heat is overwhelming. It exacerbates all of my symptoms, even some I rarely experience.  Even looking at my posts over the last few years I have only written in winter.  I have always been busy.  I have not been able to just sit still and watch the world go by.  I have to be active.  I read a book or quilt of now I even knit if I am just sitting.  I am the person on the plane that has the light on (my apologies to those I annoy) through the whole flight because I am quilting, or knitting or working on something on my computer or maybe even reading a book.  Since my diagnosis I have found myself just sitting and doing nothing over extended periods, especially now in the summer.  It is one of the oddest things that I find myself doing anymore, odd at least to me.

What I have learned though is that heat is even worse than just making my numbness in my legs worse or making it harder for me to think clearly.  When I was first diagnosed I had a blown pupil (fully dilated) when I was about 30 days into P90X, which if you have seen the infomercial or done P90X you know it is a bit of an extreme workout.  I was working out at least 1 hour a day, every day.  Now I know that is not as extreme as you can get for a workout, but I was loving it.  I was also back on my bicycle and back to running.  The last time I went into the hospital it was after I purchased a total gym.  I was 5 days into 1/2 hour workouts each day when I remembered that I had a working theory of exercise puts me into the hospital.  So I stopped the workout plan and just did a little of exercise from then on, but within 3 weeks I was in the hospital.  It has been long enough that I do not remember the hospitalizations in between, but I had to have had exercise linked to my hospital stays to have had that theory.

After 3 or 4 experiences of going into the hospital because I had  a new lesion or plaque build up in my head or spine it is no longer a theory for me.  It is the way my MS works.  If I exercise just a little, to the point that I get hot and start sweating, that is to much.  What is the most difficult is I have always been active, running, swimming, hiking, walking, something, and now I sit and walk a little bit.  My pedometer helps me know if I have walked too many steps in a day, not how many more steps do I need to take today.  It is backwards and leaves me sad when I think about it.

What is worse has been the weight gain.  When I start working out, like P90X, I get my metabolism working at a higher rate.  Then I go into the hospital and they give me steroids to shrink the plaque so that it will stop putting pressure on some nerve in my head or spine.  Not just a little Z pack of steroids.  IV based steroids that is a higher dose than even the nurses are used to seeing.  That leaves me exhausted and I sleep a lot for the next few weeks.  The signal that gives my body is that something horrible is happening so it better store fat for  energy that can be burned later just in case.  I have repeated that cycle 3 or 4 times in the last 7 years.

SO… I gained a lot of weight and I cannot exercise to take it off.  What is a girl to do?  I looked for a diet plan like weight watchers  but I could not find anything I could do because I am also gluten intolerant.  Until last fall.  My dear friend Mina Fies introduced me to the Healthy Weigh Now.  What really had me interested in trying it was that it was completely gluten free!  So I signed up.  Since Oct 22 I have been eating about 800-900 calories a day with less that 50 grams of carbohydrates, which is not much food.  It is cleverly crafted to put my body into ketosis which has me burning that fat that I kept storing up.  So far I have lost 40 pounds all without exercise! It feels like a dream to me.  I keep shrinking and shrinking and clearing my closet out of clothes that are too big.

It feels amazing to know that I can wear any of the clothes in my closet with the only concern that they may be too big.  It has taken dedication though. To have been on this diet through the holidays, Thanksgiving and Christmas, was tough.  To watch the pumpkin pie or the pecan treats go by and not touch them was so tough.  I did sample them, but only a tiny small amount on the end of a spoon. Less than a 1/4 teaspoon of any sweet.  Knowing that next year I will be able to have some pie.  Knowing that I will not be so embarrassed wearing shorts this summer.  Knowing that my body will be healthier made it a little easier.

I feel that I still have a long way to go but I can also see that I can get there, even before summer gets here again.