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.

A new year, a new project

I have to admit that I feel that my body betrayed me.  With MS it just does not behave the way it did and I don’t really like it.  But somewhere along the way I betrayed my body.  I will begin the work of changing that today.

When I was diagnosed and put on such a large dose of steroids my weight went up.  My B12 levels dropped dramatically and my weight went up further.  I am now afraid to work out, so my weight went up more.

I am starting a slow carb diet.  I found it in the Four Hour Body by Timothy Ferriss who was featured on Dr. Oz.  He seems to make sense from everything that I know so here it goes.

Four meals a day, 6 days a week.  Each meal to consist of a protein, a legume, and a vegetable.  No bread, fruit, potatoes (or other white starches).  On day 7, as he puts it, Dieters Gone Wild.

Lets see where this goes!

MS… and misunderstanding

This past weekend was a terrific event to raise money for awareness and research for Multiple Sclerosis in the WDC area.  The event was Bike MS: Beyond the Beltway.  My plan was to ride.  So many things got in my way though.  I could say that I was full of excuses, but I believe I made the right decision to be on the crew and support the riders.

What was bizarre and shocking to me was to have a rider tell me I was a wimp, but even more shocking was the way.  He lumped me and all other people that have MS into a single group of wimps.

The weekend was quite warm and humid.  I woke up quite worried, perhaps I could even say I was scared about the prospect of just being outside in that heat all day, and that was with the thought that I would not be riding. My body does not react well to heat, and when I say not well I really mean it.

I am not used to being called a wimp.  It is not a word that people have ever really used to describe me.  I have to admit thought that this past year+ has left me very careful about being tired and overheating.

Today is a nice comfortable day with minimal humidity.  I just went for a 20 minute easy bike ride, and yet even that was enough to bring on the first of the reactions that I have.

My head first feels like it is in a kind of vice.  If I don’t pay attention and the feeling just gets worse.  After that I feel even more tired.  But it is odd, it is this all consuming, unavoidable, inescapable tiredness.  Next I start to get dizzy.  The kind of dizzy that you feel after you have had WAY to much to drink.  The kind of dizzy where the world starts to spin and all you want to do is lay down.  If that was not enough my eyesight then starts to go.  It is not quite like I am blink, but I also get to where I cant really see either.

Combine that with a possible broken rib from coughing so much for long because I have yet to learn my lesson.  MS makes it real hard for me to clear any kind of infection without assistance.  The hospital did not do an X Ray to save my body from any more radiation than necessary, but the doctor was able to tell me I had all of the same damage to the surrounding muscle that I would have with a broken rib.

Combine that with an insane travel schedule that has kept me from being able to do any practice rides.

And well…. I thought is safest to not ride, but rather work as hard as I could in support of the riders.  I was still exhausted from just that and I was able to save energy by working inside all day.   On Saturday I left the ride early because I had gotten to the point of the world spinning on me.  I sat and rested for a little bit until it was safe to drive, then I went home to bed.

So I guess what I want to say is that if you know someone that has an illness of some kind walk a mile in their shoes before your judge them.  Please.

I am learning how to manage my tiredness. I am working to learn to manage my overheating.  Other than staying in the AC all the time that is.

This will not stop me.  I do plan on riding next year.  I just have to figure out how….

Where to begin… again… ???

It has been so long since I have been blogging.  Since being hospitalized and then diagnosed with MS my world has been a little different.  My main reason for silence here is that I have not had the mental or physical strength to handle my day-to-day life and to share my thoughts with anyone.

Being diagnosed with something that the doctors and scientists don’t fully understand the cause of and have no cure for is a bit odd.  Not only that but this is a disease that is different for everyone.  How exactly this disease will affect me in the future is not known.  I could live a very long and mostly healthy life.  I could have symptoms from this disease that affect me and the life I lead in a very negative way.  There is just no way to really predict the future.

I have often thought of the song by Tim McGraw “Live like you were dying” over these past many months.  There are places I would love to visit and since I don’t know what my future will look like I visited Chichen Itza in November.  My travels have taken me to Cancun and the surrounding areas several times but I have never visited any of the Mayan ruins.  So I went.  And I was blessed to have my dear friend and her husband join me for the trip.

Before that I went to Breckenridge Colorado in October and was blessed to take my parents with me.  It was pure joy to watch my parents as the amazing views of the Rockies showed themselves to us as we drove along.  It is truly an awe inspiring and jaw dropping place.

I will continue to move on with my life and do what I can while I can not knowing what will come in the future.  In other words I will live for today.

I feel like I have been a horrible friend to my dear friends over the last couple of years, and it only got worse (I think) this past year.  I have been all about me.  It is not that I have not wanted to be there for my friends, or to socialize, or to talk about someone elses life other than my own.  It is that I have not been able to.  All of my energy has gone into holding my own life together.  I deeply apologize to all of my friends and am very thankful for everyone that has been there for me.