Walk MS 2011 Reno/Sparks

We had a wonderful time at the walk this year.  My family, friend's and co-worker's came and showed their support.  The weather was actually perfect for me.  It was overcast but it wasn't cold or too windy.  I didn't have to wear sun glasses or anything.  I couldn't have asked for better weather myself.  I was asked to speak about MS, how it affects me and why I walk for MS. 

 This is the first half of my speech.  Afterwards a lot of people told me that I had them in tears, but in a good way.  I couldn't believe how much it affected everyone.  A few people want me to speak at dinner's and other events.  This is something I have always wanted to do but that doesn't mean it's what God wants for me.  We will see, I will have to pray about it and ask God how He wants to use me. 



Me and my sister's in Christ

My Mom bought a raffle ticket and gave it to me.  I won brunch for 2 at Rapscallion's.  We've never eaten there before but everyone's says that they have great food.



My husband and I

Our team collected over $4000 for the MS Society.  I know the funds will be put to good use and I am so grateful to all who donated and helped our team raise money.

MS Warrior's




MS Walk

I know it has been a while since my last post.  For the past 2 months I have been busy raising funds for the Reno/Sparks MS Walk which is now 2 days away.  My team, the MS Warriors has raised over $2700 which is the most we have raised so far.  I formed this team 3 years ago and this year has been my best year.  We have more people walking, we have raised more money and I have had more fun than ever this year.  When you are a part of something so important and you get to witness everyone's love and support for your cause, it does something amazing to your heart.

My symptoms have been ok.  I believe I'm getting stronger.  The weather in Reno is utterly confusing but I eventually want to start walking more.  I'm not much of an outside person so we will see what happens.  Pray for me.  I really need to start some form of exercise.  I love pilates and it's a good way to strengthen my core muscles so that is what I will do.  I tell myslef that almost every day.  And I actually have the time to do it.  Having the energy is another story. 

I have been asked to speak at the walk.  Our team is the top fundraising team this year.  We have always been a part of the top 3 teams but this year we are number one baby.   I said yes of course.  I am honored but I am also nervous.  As much as I love to talk, it's a different story when I have the undivided attention of a crowd of people.  I will rely on my sense of humor.  I'm supposed to talk for 5 minutes.  Isn't that kind of long?  Well, my husband plans to record my little speech and I promise to post it in a few days.

In the meantime, I gotta finsih getting ready for work.  Sayonara

Awake

It's a calm, quiet night around 11:00 p.m. and I'm already half-way asleep.  I wake up to get a drink of water and go to the bathroom.  Once I get settled back into bed I am unable to get back to sleep.  A familiar sensation on my torso begins to take form.  It feels like something is crawling on me, mainly directly beneath my skin.  Oh no, not again.  I hate it when this happens.  I am unable to get back to sleep until 1:30 in the morning.  Sometimes when this happens, I get up and rub lotion all over my body.  Maybe my skin is too dry.  Other times I drink a few sips of Riesling. 

Wine often helps me settle down and get back to sleep within 30 minutes.  I don't do this often because I don't want to become dependant on any substance to relieve my symptoms. My primary care doctor recently prescribed me some Ambien 5mg.  I was somewhat nervous about adding to my list of meds and I'm skeptical abut sleeping aids because I don't want to become dependent on them or wake up feeling groggy but Ambien supposedly isn't like that.  I took one of the tiny 5 mg pills for the first time a few nights ago and it didn't take me long to get to sleep at all.  The next morning I actually felt great  much to my surprise .

There are different reason's why a person might feel this creepy, crawling sensation on their skin.  Sometimes it happens as a result of withdrawal from a drug like heroin, oxycodone, amphetamines, or alcohol.  It can also be the result of side effects from medications such as Ritalin or Lunesta to name a few.  I recently realized that this is also one of the many symptoms of MS.  I'm not sure why I didn't make that connection at first.



Diagram of nerves beneath your skin

   It's a nerve issue and we have thousands of them branching from our spinal cord to every part of our bodies from head to toe to skin.  I have googled this symptom quite a bit.  I found out that this is a rather common problem for many people.  Stress, anxiety, or lack of sleep can also cause this unwelcome sensation  to happen and it seems to be more of a night time issue for most sufferers.   The first time I had this problem, it went on for 2 consecutive weeks.  I thought I was losing my mind.  It's kind of scary when you can't figure out what your problem is and trying to describe it to someone might make you seem a little crazy or paranoid.  To add insult to injury, one night we were on our way somewhere in the car and it felt like something was crawling in my hair.  This time there really was a spider in my hair.  Aaghh, I was really freaking out and I'm so glad my husband was there to kill it with his bare hands which is typical of him.

The human body is so uniquely amazing at giving us warning signs.  Our God given instincts tell us when something just isn't quite right.  It might be a good idea to let a few weeks pass before going to a doctor but if it goes on for more than a month, I encourage you to get it checked out.  Also, be your own advocate or get someone very close to you to help you research and stay on top of your health issues.  You cannot depend on doctor's to do as good of a job as you can.  No doctor knows you better than you know yourself.  God bless you and take care of you.

Vitamin Savvy

I read a book called "The Vitamin D Solution"by Michael F Holick.  It was extremely interesting.  I encourage people to make sure that their vitamin D levels are within normal range. 

I have included a link to a post from my Keepin It Real blog about what I found to be the most interesting facts about vitamin D:

Keepin It Real: Vitamin D Deficiency: "Vitamin D deficiency is related to autoimmune diseases, depression, osteoporosis, heart disease, cancer, diabetes, chronic pain, Psoriasis, ..."

A Day in The Life

   Today was a good day.  I had my Tysabri infusion which I get every month for MS therapy.  It's actually a good time for me to just unwind and chill for 2.5 hours.  I sit in a recliner and I usually bring a book or my journal.  I always do my therapy first thing in the morning before I go to work from 8:30 to 10:45 or so.  It seems like the months fly by and before I know it, it's time to go back.  I have a great relationship with my nurse.  We spend the whole time talking about our families and our back ground.  She is Philipino and she lived in Nigeria for 6 years.  Her father was in the military so they traveled a lot.  She has been all over the globe.  My new nickname for her is "The Globetrotter".  I have never been out of this country, which is fine with me.  I would love to go to Paris or Tuscanny but I'm just as satisfied watching Under the Tuscan Sun or the travel channel.  I'm more interested in seeing the places than actually being there.
 
     After the infusion today I had a giant burst of energy and my day at work went very well.  I usually get pretty tired between 11:00 and 2:00 but not today.  By 5:00, I was still feeling great.  It's not always like that.  Sometimes it's just the opposite.  I was a littlle shaky after my therapy today.  I need to make sure that I stay hydrated.  Once I got some food in my system, that went away.  I am so grateful for this treatment.  It really makes a difference in my quality of life.  God is always blessing me left and right.  To be able to work and to still have a job is a major deal right now that I do not take for granted.  I really love my job and having MS does not prevent me from being able to keep up and do a good job. I don't even want to imagine what my life would be like if it wasn't for God's favor.  I know without a doubt that I'm doing as well as I am because of Him.  I feel like I can do anything, and most of the time, I do exactly that.

Word Fishing

I learned a new term used a lot in the MS world.  It's nice to see that we have a name for the times when we draw a complete blank on simple words.  I talk a lot so for me it seems like every 3 words get hung up in my head and I'm trying to figure out what to say or at least use a synonym.  I am not very good at explaining things.  God has taught me so much about myself since my MS diagnosis.  He taught me how to slow down a bit and not to bite off more than I can chew or put too much on my plate.  Anyways, I haven't been able to master the "tongue".  It's a constant battle for me.  I have gotten better though since my attention span is so short.  I thought I was just an amazing multi-tasker.  I start one task in the kitchen, walk into a room and see something else that needs my immediate attention.  Then the phone rings and it's my mom.  She uses me to talk to her on the phone because she gets her house cleaned without even realizing it.  Then she hangs up on me.  Then I go back to the kitchen and I have now forgot what I was doing. If multi-tasking means starting all these little tasks and not accomplishing anything then clearly I am an amazing multi-tasker.  So far today I started getting ready for work, then I decided to make some coffee, now I am editing this blog while I wait for my coffee to brew.  Truth be told, I do this every single morning and I end up forgetting to wake up my daughters to get ready for school.  On that note, I gotta go.  I have 2 minutes before I have to wake them up.

New Symptoms pt. 2

Last night I experienced a new symptom.  I was sitting in bed and I noticed this tingling sensation in my forearms and hands.  It went on for about 20 minutes.  It felt like they were asleep but really it's what happens before you go numb.  My feet started out the same way in the beginning.  Since this sensation is in my arms, that means that I must have new lesions in my spinal cord near the nerves that affect my arms.  I don't know. Since I'm on Tysabri, I'm supposed to contact my neurologist anytime I experience new or worsening symptoms.  I cannot take any other disease modifying drug or steroids for 6 months after stopping Tysabri.  Supposedly that's how long it stays in your system.

 I was explaining to a friend that MS affects both your brain and spinal cord and that's why I experience such a wide range of symptoms.  She didn't realize this and she asked me if I worry about my future.  Yeah, maybe sometimes I find myself thinking ahead but I don't worry about the future because tomorrow isn't promised to me or anyone else.  I'm finding out that a lot of people, including my friends don't know much about MS at all.  They seem to get it confused with Muscular Dystrophy, another debilitating disease except it can be fatal.  MS is rarely fatal. 

I see that my thoughts of becoming an MS activist need to be put into action.  I would like to speak to others about MS.  I actually enjoy answering people's questions about my condition.  As long as people want to know, then I don't mind telling them.  I guess I better get started on finding out what my next step should be because I am very serious about this.  I do as much research as I can and that's another thing.  People don't feel like they have the time to research their situations but I strongly encourage it.  Whether you have MS or any other condition, take the time to educate yourself as much as you possibly can.