Homecoming!

If anyone has ever been to high school homecoming parade, you know how much fun it can be.  Today I went to ours. A lot of football, cheering, bands marching and the king and queen.  So happy to be able to enjoy a great day with all the kids.
I haven't had any new problems with the gilenya.  I did see my neurologist and we talked a lot about the side effects. I was glad to hear one of the side effects they have been hearing a lot about is fatigue.  Of the 90 patients Ruan Neurology has taken the gilenya, at least half are having an increase in fatigue. I'm most thankful it is the gilenya making me more tired and not the ms.  The one symptom most ms patients have and the single most complaint is fatigue.  It has been described as a normal person (without ms) at their most tired point of the day and multiply that times 100.  A short nap of even 20-30 minutes can revive some energy. But at times even 10 hrs of sleep we can still be exhausted.  The heat and humidity play a huge roll in my fatigue. That is coming to an end soon!
My neurologist lectured me about swallowing a little bit of pride and try using a walking device more often (aka-cane). And I know it would be easier to use it than falling and breaking something else, but it is sure annoying to depend on to walk.  If I just knew when the legs weren't going to work would be so nice.
Today, I am so grateful to be able to walk (without the cane) and enjoy my day.  

Fall is here!  Cooler days and nights are just around the corner.  We have had our last 90 degree day. Yeah! A busy but fun time of year. Trees are just beginning to change colors.  I love sweatshirt weather.  It's the most comfortable season we have. Absolutely perfect.
I have nothing new to brag about with the new treatment...gilenya.  It been four weeks today since I started taking it.  I think it's making me a little more tired than usual, it that's possible.  I go in a couple days to have blood work and get my white count, so that may have something to tell us. I'm anxious to see how the other ms patients are handling the drug. My legs aren't as wobbly as last week and my ole' messed up arm is better, swelling down and not much pain.
I don't have a lot to complain about, I woke up this morning, slid my legs over the side of the bed, put my feet on the floor, stood up and said, "Thank You God."  Oh, the little things we take for granted! Always reminds me who is really in control!

Finally it is 2:53 am!  I am begging for it to be 5:00 am, as lie there and watch the clock. Got to bed about 10, thought I would sleep great.  Who couldn't sleep as nice as it is. Windows opened, quiet and 55 degrees. Sounds like a dream? It is wonderful until I roll over and I have only been asleep 2 hrs.  It's like taking a nap. Seems like I have slept for hours, until I look at the clock, again. Then again.  Might as well get up and blog about the past couple of  (notsogreathadbetter) days.
You remember a week or so ago, I fell, hit my arm, got an injection? Well, now I know why I shouldn't have any steroids while taking gilenya.  Because that's the rules.  Even only being on the gilenya three weeks has been long enough to lower my immunity. I don't fare well with steroids anyway, so the one little injection was a good lesson learned for me. Reasons not to take steroids:

• I get thrush, (white patches) in my mouth, tongue, throat. That hurt, so I rinse & swallow, YUK!
• I have a slow heart rate, after steroids it has been in 30s.
• I get a chemical taste in my mouth.
• I have erosion's in my stomach and intestines, from so many steroids. Very painful trying to keep to my southern living/cooking diet!
• I have "roid rage" and no one in my family likes me.

I am hoping the aftermath of the injection is about over.  I'm sure it could be worse, I just don't want to experience worse right now.  The gilenya is so easy. I feel lucky I don't have to wake up and think about giving myself an injection. For now I will keep taking the pill & rinsing.

Also, being the 10th anniversary of the twin towers, I feel pretty lucky to live in America.  Let's remember the friends and families of everyone affected by the 9/11 tragedy.

Officially three weeks today was my first day on "gilenya."  The only thing I can say about it is I am still taking it!  I still have the ups and downs with the ms, but I can rest assured I am doing all that I can to slow the progression in my body.  Too bad that is the only thing to report about it.  It has not been a huge boost of energy, or a repair of damage, but it may be coming....later.  If I can keep from getting any infections (remember to get my flu shot) I think I can handle this. 
This morning was cooler than any so far and I could already tell the signs by my numbness.  The cold will be worse on my feet, legs and hands than the heat.  Unbelievable that it is so nice outside, but my feet and fingers are frozen. That's a good description!  I know I still have toes on my feet, feet on my legs, fingers on my hands & so on, but to me they feel frozen.  To the touch they aren't cold. Weird huh? Trust me it feels weird, too.  I'm sure if I could figure it out, the 400,000 people who have ms wouldn't.

One of the best things about waking up at 3:00 am is the quiet. Oh my gosh, I can walk outside and it is so peaceful.  What a great time to think, pray and listen.  Nobody is asking, where is this, can you find...etc!  Too bad my alone time is 3:00 am.  Sure makes a long, long day. 
It has been a couple weeks now on the gilenya.  I don't think I'm having any new side effects from taking it. However, taking the cortisone injection for my arm was not a smart idea while taking the gilenya.  My body does not welcome any type of steroid at all.  When I have a treatment of solumedrol (steroids)  I usually have to get a pic line, then 5 days of treatment.  I never thought in a million years one injection in my elbow would cause any problems. WRONG!  Same effects as usual but at least this will soon be out of my system.  Since having the injection, I have learned not to have any more while taking gilenya.  I have to remember the purpose of gilenya is to lower the immune system by decreasing the lymphocytes. Steroids will also lower the immune system so taking them at the same time could drop my immunity even lower.  Not a good combination!
Waking up to 50 degrees is a good feeling.  Maybe today is the beginning of a new season!