Well one more day of treatment! I'm having a hard time believing this is going to be permanent. I can't descibe the numbness over my entire body. I never realized what people with ms were talking about but when I have the same numbness inside and outside of my body, I now know. Things have to get better. It has been a long couple of weeks. I don't understand how people do this without family to help with driving, cooking, and errands. I am so thankful to be blessed with mine. Tomorrow will be a better day!

The First Blog of The New Year

What better way to begin the new year than the birth of our newest family member. Ellie Elizabeth was born Jan. 5th. Born on a record high temperature of 65 degrees. A wonderful day. Ellie was named after her great grandmother, my mom. Well this blog is coming in the middle of another ms relaspe. We have been so busy since the last blog. We moved to the country. It has been a great thing. I love living in the country. I have a huge picture window with a wood burning fireplace so i have been able to watch deer and snow at the same time, while staying warm. I am waiting on my neurologist to call this morning. I explained to his nurse yesterday, I haved waited 12 days to call again. Hoping the flare of symptoms would get better on its own. No luck. I am numb from head to toe. My eyes do not feel the blinking, can't feel my feet nor my hands. My muscles are stiff all over. The pain all over is worse than ever before. I know my good luck has came to an end. My entire body is now effected by ms. My bloodwork says normal. What a joke. Too bad it all shows everything is normal. Proves I cannot be treated by my family doctor. I am sure today of all days, with the temperatures down to 15 degrees, 3 new inches of snow, wind chills of -2, a sick child, I will be going somehow to get the pic line for 5 days of steroids. That is the usual treatment to stop the inflamation during a relapse. The next 10 days will be a challenge. It may help but sure comes with a lot of side effects. I pray after this relaps the numbness will go away. Hopefully I can feel close to normal again. It's killing me to be dependent on my family to drive me around, and do the most simple things for me. I am happy I have time to blog, but not happy I have changes to blog. Ms is such a challenge. Hopefully this will be the only relaps for the year.

A New Year

I haven't posted in a while so let me give an update.  Gilenya is not a miracle!! I still have ms. hehe
To be serious now, it is manageable and I will continue to take it.  I have been able to go and do more in the past week than I have in months.  That's a good thing.  Even with 4 hrs of sleep.  Absolutely despise night. Just napping.  Maybe it's my age. Nobody ever said when you get this age you stop sleeping.  It makes a long, long day. 
But, God works in mysterious ways, for some unknown reason to me he gave me this life so, I deal with and I am giving God the glory for all things. Good and bad. .

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.