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.

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!

It's Always Something!

I want to start today by saying the gilenya has not been so bad. The percentage of the gilenya slowing the progress of ms is one of the highest of all the ms drugs.  If I can tolerate it as well as I have the past few days I will continue taking it. Some of the side effects the doctor will start checking is my white blood count. The gilenya will lower the white blood cells (lymphocytes) in my blood causing infection.  I will have to have my eyes checked for macular edema, which have the same symptoms as optic neuritis. I have had optic neuritis in both eyes, but that doesn't mean I have a greater risk of macular edema.  I will trust that the worst of any symptoms are over.  If I can tolerate the pill for 2-3 months, I may have it whooped!
I saw an orthopedic doctor today. I have an old injury so the "good" doctor said it started by being broke once and at least 20 years of playing softball, then I had it repaired 10 years ago.  Now and after the fall on Monday, I find out there is no way to repair my arm without having an elbow arthroplasty (elbow replacement). One of the bones doesn't connect at the joint, the bones and joints have arthritis. I did have a steroid injection in the joint for inflammation and pain.  I will have to decide in a few weeks about the surgery. Pain is an issue, but my body hurts everyday and I always make it through another day. God is good. I will not worry about the arm. I trust the Lord for direction.

Today has been a good day. I woke up to nice cool breeze, cloudy and a chance of rain.  I was able to get out of bed without being so stiff today. What a blessing! Little things mean a lot around here.  I continue to do stretching and it really helps with muscle spasms and stiffness.  Even in my neck and back it is helping. I even worked around the house without little problems.  I don't think I am having any side effects from the gilenya now.  I still have the symptoms of ms and probably will until there is a cure.  But for now the gilenya may slow the progress of this crazy disease.
Paul and I had an experience of a lifetime today. We were asked by my neurologist to have a photo shoot with him.  We accepted and spent an hour with photographers and Dr. Hughes. We were not sure what to expect. Then the crew came in started putting makeup on us and explaining what was happening.  The photos and videos will be used by the hospital, ms clinic, and websites for marketing. May not sound like a big deal, but he is "The MS Specialist of the Midwest." Hope the photos turn out okay since our three kids work for the hospital!
 Tomorrow I will see an orthopedic doctor for my hurt and swollen arm. I am anxious to get it over with and ready to ease the pain.
Today I am thanking God for a good day.

Today has been a much better day! Whoohoo!  I'm sure it is because so many of my family and friends are continuing to pray for me.  After a lot of stretching my legs finally felt okay.  I walked a lot today since I slept most of yesterday.  It's so hard for me to have two rest days in a row.  My numbness is still all over my body, but I could walk today!
While I was out and about today, I missed a step and fell.  Nothing too serious, but I do have a hurt left arm (elbow). Although it hurts quite bit, I suppose it could have been worse.  I will be seeing an orthopedic doctor anyway on Wednesday.
Yesterday I was hoping today I would have a better day & I did. Maybe it will continue to get better since the side effects seem to be getting better too.

Having slept most of the day today and the numbness all over, we are thinking I am having another exacerbation. Yuk! However, I am continuing the gilenya. I will call the neurologist to see if I need a
solumedrol infusion. That is the last thing I would choose, but if it helps I am all for it.  Nothing like five days of infusing steroids.  They have a complete opposite effect for me.  I sleep like a baby for five days. May not be a bad choice.  The side effects from gilenya may be the culprit tho. Some of the more serious issues that could be life threatening problems are cold sores and chicken pox. (had as a child)
My neurologist will check my blood count and liver enzymes every few weeks. All of this still is better than an injection every day and taking the interferon drugs for me.  The interferon injections, like Avonex gave me flu like symptoms within an hour chills, fever, nausea, vomiting. I don't want to do that again. Right now I am for the pill, gilenya.  Hoping at this point I will have good results in the next few weeks. Tomorrow will be a better day. 

What I've Learned

The garage sale went well today even tho I was going on 4 1/2 hrs sleep. The past two days have been exhausting. Lack of sleep and still trying to keep going makes for a long day. Everything will soon begin to spin....first sign of overdoing it, then the legs go.  I'm still sticking with gilenya and so far still have some side effects.  My vision is very blurred, headaches, & pain in my hips & legs.  I am thinking a pill that cost $48,000 a year would be near perfect. Hopefully, soon I will be saying how wonderful it is.

• What I have learned about ms. Just because I feel good doesn't mean I don't have ms. Just because I have an injection everyday doesn't mean I won't have ms. Just because I try to forget I have ms, it doesn't go away.  Just because I want to have a negative attitude doesn't mean I have to.

I have learned to live life, even with limitations, and even with ms. I don't have to be at 100% all the time. We all need something to make us stop and smell the roses.

Back to School

Summer has officially came to an end. The kids were anxiously waiting to get on the bus, but the first day of school can be a stressful time for parents. Especially parents with ms. Preparing for school takes time, energy, and money. With those 3 words comes stress.  I am always excited for a new school year,  but we get so busy with homework, early drop offs, late pickups. Fun or stress?
With the gilenya, I made it through the first 7 days.  Taking this new pill has made a difficult week.  School starting and the new medicine.  What was I thinking? Maybe I should say I wasn't thinking.  I have had most of the side effects that go with gilenya, but also the ms symptoms have been much worse. I just have to trust my neurologist that gilenya is the best for me right now.
All the information about ms now is exercise, exercise. I have tried both relaxing and exercise.  I know that moving does help with muscle stiffness, but it also makes resting essential. And I am not a good "rester." Ms keeps my life and walking so out of balance. This is so unpredictable. At this point, I sometimes have to wonder what's the difference in a good day and a bad day?  Then I am reminded of one important detail, Jesus only makes good days.

Almost a week has gone by since I started the gilenya.  I feel like the side effects are getting less noticeable.  Although I still have a lot of ms symptoms, who can say it is just the ms or now the gilenya.  It should take about 12-14 days for my body to get used to the new drug.
Let me explain a little about ms. It is an autoimmune disease and nobody knows how you get it.  It is unknown at this point.  Being autoimmune is exactly what it says-the body's cells begin attacking itself.  When the cells cross the brain barrier it causes multiple sclerosis. 
In MS, the immune system attacks the myelin sheath, damaging it. There can be so much damage that the neuron itself is hurt or even broken. It was explained to me like an extension cord and the protective coating is being damaged. Causing the wires to be exposed. When this happens, the neuron cannot help electrical impulses travel where they are supposed to go. This produces the different symptoms of ms.
Today, I haven't had any rest and it is all my fault! I thought I would feel better if I just kept going.  WRONG! Makes me so mad when that happens. I should probably listen to my body and take rest a little more serious.

Today being Sunday, first I think of is going to church, then an afternoon nap. Being up two to three times in one night sure calls for that nap, but it doesn't always happen. One thing about having ms is a very irregular sleep pattern.  Some days I can sleep 12 to 18 hrs. then other days I sleep 4 to 5 hrs. I know it sounds crazy and doesn't matter how tired I am that's just the way it is. So usually by noon it's nap time.
Most days I only plan one thing. A trip to the grocery story or going to church will wipe out all my energy. Like the grandchildren say sometimes it's time to take a rest!
Well, today being day six for gilenya, I have to believe the worst is over. I didn't even notice a change in heart rate today, even though the pill has had the same feelings as having an ms exacerbation. I am thinking the gilenya will be a good thing after the first few weeks.
Ms is not the worst thing that could happen, I know it could always be something much worse.

Day 5

Today was a little better!!  At least I did have the energy to get out of the house a while.  Although, within one hour of taking the little capsule, gilenya, I have some strange effects.  My vision is still blurred and still no depth perception, my legs are shaky and still not much feeling. I do think my heart rate is back to about 50. That is supposed to be the worst of the side effects of gilenya. So I am thinking at this point my body may be getting used to the new drug. My family does tell me my memory is not so good (like I don't know) and I don't always think so fast anymore, but that is part of the ms and not the gilenya.
Ms is a strange disease. Most people think it is all about walking and either you can or you end up riding on a scooter. That is not true. It can affect every nerve in your body. I don't even know how to describe the feeling of having pain and being numb at the same time.  Nor can I explain why the muscles stay so tight and stiff,  like when I was in high school and Coach Smith made us run lines, the muscles would throb for a while, with ms the throbbing doesn't stop. And what I would give if I could run lines now! Funny how we miss some of the strangest things.
The purpose of gilenya is to slow the progression of the disease. I can only hope and pray I can tolerate it so it can do what it is supposed to do.
I read this quote the other day, "You may have to fight a battle more than once to win."

Day 4-Well, I don't have a lot to say (good) yet about gilenya. Having to be careful walking, crazy feeling of numbness and stiffness, so much more than usual. The same headache and muscle aches after taking the wonder drug! Still have blurry vision and achy all over. By the end of day three walking was getting doubtful.  I can only hope soon and very soon the side affects taper off. 
Some things we take for granted: walking, our family & friends, sunshine, & cool mornings!

Well, after exhausting all other ms disease modifying drugs, my neurologist recommended gilenya. It required jumping through a lot of hoops, finally my insurance approved it. Maybe it is the miracle drug for ms, if it has anything to do with cost & a cure...this is it! It is very expensive. One would hope this is the one we have all been waiting years to get.  First and foremost, it is a pill, not another injection.
The first day, (a six hour dr appointment) was the beginning of gilenya.  A group of us, checked in at the dr, got vitals done saw the dr and took the first pill.  We were provided food and drinks from Novartis, and then at the end of six hours I was on my new journey.
Day one-heart rate dropped to 48.  Slight headache, shortness of breath. At the end of the day, I had a change of attitude, what could be worse, a few side effects that will hopefully go away or an injection everyday?
Day two & three-heart rate pounded and shortness of breath, hip pain, maybe within 30 days the side effects will go away.
I will post more as time goes on.