Wednesday, May 25, 2011

World MS Day

Happy MS day to all!  I totally rocked my orange today, although I was surprised I had a stitch of orange in my closet.  Orange is just not my color.  I am a total pink girl all the way, but for my MS, I put on the orange today. I know some probably think, "why bother, it's not actually helping anyone or helping to find a cure?"  My response to that is, no of course it doesn't cure MS, but it shows  that I support the cause, it shows that I am aware, it opened up a bit of dialogue to let others know, and it serves as a reminder to me of what we are fighting.  When I saw that others followed suit and wore orange, it made me smile.  When a friend posted on my wall that she wore orange from me, it made me smile.  When another friend dressed her baby up in orange and tagged me in a photo that said "for katie", it made me smile.  It made me feel a little bit less alone today. I saw that there were people out there thinking of me and my fellow MS'ers.

It's so crazy how emotional I have been lately.  I suppose it is just a mix of the shock of the diagnosis, the physical ailments, the emotional battle of trying to deal with this and process this, being scared and anxious, and being stressed out, that is causing me to ride that emotional roller coaster   I am looking forward to this weekend, so i can relax, and regroup.  I really need some time to just relax and have fun.

I woke up  this morning feeling terrible again.  The nausea was back, along with the usual vomiting that I have been so accustomed to these last 8 months.  I didn't have the odd vomiting yesterday, but my regular old vomiting today.  The fatigue and weakness have also been present all day, and I have even had moments where my left hand was a bit tingly when I was typing.  Some other random things I have noticed is that just about every morning i wake up with numb arms.  I thought maybe I had just been sleeping on them funny, but now I'm not so sure.  I have different body parts fall asleep so easily all of the time now.  I also get these shooting sensations, not pain, that run through my legs from time to time, especially at night.  It's not pain, but just like an electric shock kind of sensation that just shoots down my legs.  It's never constant, but it drives me crazy when I am trying to sleep.  I have also been having neck pain, but I am not sure what this is attributed too.  I know I have to be careful to not blame everything on MS, and I am not, but I have no idea why it hurts.   Perhaps I am just sleeping in an awkward position, I am not sure, but I will mention it to my doctor at my next appointment.

My shot tonight was VERY painful.  I don't know if I hit a muscle or a nerve or something, but I got shooting pains down my leg.  This particular shot was in my hip/butt region, which normally seems to be one of the best places to do it.  Of course it stung, but it was also just plain painful.  It feels like it is definitely bruising.  It left a welt and a red area around it.  I have to be sure NOT to repeat that mistake again.  Oh and speaking of mistakes, guess who wasted another shot tonight?   Yep, this girl.  I forgot to take the safety cap off.  Really, I need to be more careful and actually take time, slow down, and go step by step.  I think I try to rush it a bit too much, because i am so anxious, and want to get it over with.  I just need to slow down and go step by step.

Well, I am off too bed.  I can barely keep my eyes open any longer.  Plus I want to try to get to sleep so I can get up early and workout before work.  Errr that won't happen I am sure, but I WANT it to happen right now.  I can pretty much guarantee come 5:00 am, all I will want to happen is sleep.  I hope everyone has a great night and a fabulous Thursday!

Tuesday, May 24, 2011

Surviving and Celebrating

I hope everyone is having a great night!  My day didn't start  out the best again.  I woke up this morning, and I knew I was going to be sick. The vomiting was  ridiculous this morning.  Nonstop.  I was getting kind of frustrated because I started to think maybe I was improving with the vomiting, but of course it had to come back today.  After thinking about if for awhile, I think I maybe have just caught a bug, because it wasn't my usual morning vomiting with nausea.  It was different.  It was terrible, but I got through it, went to work, and survived the day.  I have still been extremely weak and tired, but I mean after a morning like that, I am not sure who wouldn't be worn out.  My throat was kind of sore all day from that.   Ugh.  Absolutely ick.

I fully intended to workout tonight after work, at least for maybe 30 minutes, but yeah that didn't happen.
My shot tonight went pretty well, I mean as well as a shot could go.  I doubt I will ever be thrilled to give myself a shot, but it's getting pretty routine now after 2 weeks.  The stinging is still there, but it seems to have gotten a little bit better, at least tonight.

Tomorrow is World MS day, a day that I never imagined that I would be celebrating, or even knowing about.  Even just looking back two months ago, I had no idea.  No idea that in a matter of just a month, I would be participating in such a day.  The fact of the matter is that I AM going to be celebrating this day.  Yes, I said celebrating.  Celebrating that I am here fighting this disease, and surviving.  Celebrating the fact that I have had the opportunity to give myself a fresh start.  Celebrating the fact that I have met some amazing friends in just a few weeks after being diagnosed.  Celebrating the fact that they are getting closer to a cure.  Celebrating life in general.  I have a chance, a chance to transform myself into who I want to be.  I was wrong when I said that this MS will give me an opportunity to "find myself."  It will actually give me the opportunity to CREATE myself.  Transform myself into the person I want to be.  I don't have to go searching for what I am supposed to do.  All I have to do is create my life, and do what I WANT to do.

I am inspired by so many people tonight.  I am  inspired by all of the wonderful people that I have met on the MS FB site, who are fighting every day and surviving.

So, I will do it tomorrow.  I will participate.  I will wear orange proudly.  I am not proud that I was diagnosed with MS, but I AM proud that I am fighting MS.  I am not giving into it.  I am celebrating the idea that I will finally become the person I want to be despite the MS..  I am celebrating all of the new friendships I have made with amazing strong people who fight this illness everyday. It is a celebration.  Hopefully pretty soon we can have another date to celebrate...the day they find a cure to MS.

Monday, May 23, 2011


I think this post might sound even more depressing than the last one. LOL  First let me start off by saying today was NOT a good day.  I woke up this morning with the horrible nausea.  I couldn't even more when I first woke up, because I knew that as soon as I did, the vomiting would come.  My neck was hurting, my head was pounding, and I had the sick feeling in the pit of my stomach.  I was so sick today.  All day I felt completely miserable.  The fatigue was unreal too.  I kept telling myself that I would go to work in 30 minutes, but it never got any better.  Of course then the guilt set in that I was staying home from work.  I just felt so horrible, I knew that I had to stay in bed.  I couldn't even get out of bed.  So all around it was just a bad day.

My shot hurt a lot tonight.  I gave my shot in my left arm, and ouch, did this one hurt.  It  bled a lot tonight, and left a welt.  I have a feeling this one is going to leave a bruise.

So, I know I talked about this yesterday about feeling alone, but I really do feel alone right now.  I mean I know I have a huge group of people in my life that are wonderful and support me, but I am just in a funk right now.  When i was first diagnosed I was getting lots of messages and calls, and I was overwhelmed by kindness, but now it's kind of like everyone went back to their own lives, and I'm still left here dealing with this...alone.  Not that I expect to be the focus or anything, but it's kind of like "wow  everyone supports me and I don't even have a moment to myself to let thoughts get to me, to wow where is everyone"  I hope this isn't coming off as bad as it could.  I just feel like everyone is so busy right now, which yes they should be, but I feel like everyone forgot me at once.  I know they didn't actually forget, but it feels that way.  I know that this is just me, and something I am going through. It's not about what anyone else is or isn't doing, I just feel so alone.  It's no one's fault.  I just wish I could move on too.

I know this is just me trying to deal with this, but it's so hard.  It's hard that everyone else gets to move on, but i don't.  I don't get to move on with my normal "pre ms" life.  I don't get to get distracted by vacations, new friends, spouses, and life, and put MS on the back burner.  I am stuck with it.  Not that I think everyone else should be, but it's just hard to come to terms with it.  Hard to realize that there are days when no one is going to be available, and I am going to be alone with my thoughts.  Being alone with my thoughts is not fun right now, because it makes me worry, makes me anxious, and just uneasy.

My therapist told me that I should not be afraid to ask my friends what I need from them. It's ok to let people in and ask for support.  The problem I told her is, I don't know what exactly I need.  It's not something simple that I need so and so to pick something up for me.  It's nothing tangible.  I just want people around and available I guess.  I just don't want to be alone right now.  I know that probably sounds silly.

I know it will all be ok.  I know it will get better, but right now I feel like I am kind of grieving.  I guess I am grieving over the loss of my old self, my old life.  I am sorry if I sound super whiny, I am just having another one of those days.  I hope tomorrow is a better, and I hope you are all having a fabulous night!  I leave you with some akon.  :)

Sunday, May 22, 2011

You had a bad day

I am not sure what is going on with me today, but I am just kind of in a little bit of a funk.  Nothing happened  good or bad, but maybe I was feeling a bit lonely today, I don't know.  Ok, I really did feel lonely, there isn't much kind of about it.  I always feel bad about bugging people, especially when I am really down, because I never want to be a "debbie downer."  Plus sometimes when you are in that kind of funk, it seems like no one is  around.  LOL  Not that it's anyone's problem, but my own, I am just saying, I kind of felt sad today.  Today was one of those days that I probably needed to hang out with friends or something, but instead I kept to myself.  It doesn't help that I am sad that the weekend is coming to an end.

 I am also sad because of this stupid diagnosis that I am not getting to go to Cancun in a few  weeks with my friends.  I can't even tell you how depressing that is.  That is our yearly thing, the most fabulous place on earth, and I will be stuck at home and at work.  I don't want to get to be too much of a downer, but yes that completely depresses me.  Yes, there will always be next year, but that doesn't make missing this trip any easier.

I really don't have much to say tonight, but I didn't want to get out of the habit of writing in my blog.  I want to make it part of my daily routine.  I felt ok today, just kind of depressed, and the fatigue was definitely there.  I have felt very weak and tired all day. No vomiting again, so that is definitely a plus.  My shot tonight went off without a hitch again, and the stinging didn't last as long after the shot tonight.  I guess that is a sign that it's getting better.  Maybe my body is getting used to it.

I am leaving on this note, because well I don't have anything insightful to say, not that I ever do.  LOL  I am just not myself today.  Here's to hoping tomorrow is a good day, but I will leave you with Daniel Powter.

Where is the moment we needed the most
You kick up the leaves and the magic is lost
They tell me your blue skies fade to gray
They tell me your passion's gone away
And I don't need no carryin' on

You stand in the line just to hit a new low
You're faking a smile with the coffee you go
You tell me your life's been way off line
You're falling to pieces every time
And I don't need no carryin' on

Because you had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day
You had a bad day

Will you need a blue sky holiday?
The point is they laugh at what you say
And I don't need no carryin' on

You had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day

(Oooh.. a holiday..)

Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I'm not wrong


So where is the passion when you need it the most
Oh you and I
You kick up the leaves and the magic is lost

Cause you had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
You've seen what you like
And how does it feel for one more time
You had a bad day
You had a bad day

New Horizons

I don't really have much to say today.  I know, I know that is very unusual.  I am just so beyond exhausted tonight.  I am sitting here at my computer too tired to get up and go to bed, because I don't want to move.  How ironic is it to be too tired to go to sleep.  I don't know if it's I am too tired to sleep or just too tired to move, but either way I am still here wide awake typing up an entry on my blog.

My day today went pretty well I suppose.  I had a tiny bit of nausea when I first woke up, but it didn't materialize and there was no vomiting.  The nausea was brief and passed only after a few minutes of initially waking up.  My shot went well tonight, so I think I am getting the hang of it. It still burns for about 15 minutes after every shot.  Maybe the burning will go away soon, or maybe it won't, but it is tolerable.

I didn't do anything out of the ordinary, just relaxed at home, but i have been researching a lot today.  My cousin sent me a link for the benefits of juicing and clean raw eating, and after reading the benefits, I am very interested in it.  What if eliminating all of the processed stuff out of my diet, and cleansing myself could do more good for me than the various medications.  It gets me thinking about what all of these preservatives doing to our bodies.  What if clean eating really will make me feel better.  I think it is worth a try, as I have nothing to lose at this point.

The MS diagnosis made me want to get healthier than ever before.  I took my health for granted before, and then in just a matter of minutes it can all be taken away.  You can go from having nothing wrong with you, to be diagnosed with an illness.  Will changing my lifestyle and trying this out guarantee that my symptoms will go away?  No, but changing my lifestyle CAN'T hurt it.  What better time than now to take control of my life?  Yes, ,all of this has been said thousands of times before, but this is different.  This time it isn't to fit into a certain size clothing, or look cute in a new dress, it is to maybe try to tame this disease.  This awful disease that is trying to take control of my life.  This disease that wants to take away my strength, take away my vision, take away my memory, take away control, take away my stability, take away my balance, take away health, but it can't take it away from me without a fight.

I am notorious for getting big  ideas, and then giving up whenever times get hard.  I am a dreamer.  I talk the talk, but then my follow through isn't always up to par.  I give up.  I give up on myself, because I let the doubt creep in.  I second guess myself.  I give up because it is easier to give up than it is to try your hardest and fail.  I don't like to admit this, but it's true.  The thing is , I don't want to be that girl anymore.  I feel like now I have more at stake.  I have my life at stake, my mobility, my memories, my loved ones, and my whole world.  I don't have the luxury of throwing in the towel, when times get rough, because they already are rough.  I am faced with no other options.  If I give up, I am giving in to this awful disease, and I can't do that.  It can't win. I have to bring my A game to the table and play all of my cards.  I need rest, I need understanding, I need to learn to how relax and take things in stride,I need my medications, I need support, I need exercise, I need healthy clean eating, I need my injections, I need love, and I need acceptance.  I won't settle for anything less.

It is easy to feel hopeless when you don't have a plan, when you don't have ideas, but now that I have made a plan for myself, I have hope.  I have hope because I believe these lifestyle changes will help me.  I know maybe I sound annoyingly cheerful or optimistic, but it's all about attitude.  I could choose to a downer and indulge in negative thoughts, but what good is that going to do me?  Not that I am going to be positive everyday, because I am not.  I will have plenty of bad days, but they will make me appreciate the good ones all the more.  I will have more good days than bad days.  I vow to appreciate life more, and treasure the good days, and filter out the bad ones.  I will prove to myself how strong I can be.  I have heard you never know how strong you can be, until you are tested.  This is my test, and I will NOT fail.  Never give up, never give in, and keep pushing forward.

Friday, May 20, 2011

Keep on dancing till the world ends

Ahhhhhh Friday, how I LOVE you so!  Today has been a good day, and not really for one particular reason or another.  I just feel like I am getting to a better place.  A number of things are helping, and I think i am just finally accepting things, or starting to.  This blogging has actually helped a TON, I think because it just gives me an outlet, a place to vent, and to just get things off of my mind.  

I am going to be going into my second week of injections, have a solid treatment plan, getting into a routine, the nausea has started to subside a bit, and I all around just feel more positive and less anxious.  I am also seeing a therapist, no shame, and it actually totally helps.  I feel so much better about things.  I am NOT happy to have MS by any means, but I kind of am starting to look at this as kind of a fresh start.  A way to get Katie in order, to better my life, lead a healthy lifestyle,follow my dreams, try to help others and make a difference, and find myself.  

Today I woke up with only a tiny bit of nausea, that ended up going away on it's own and no vomiting.  I feel like this is HUGE progress.  My shot tonight went out without a hitch.  The sting was there, but it was minimal.  The stomach shot actually seems to be the least painful.  Today I am just really starting to feel more at peace, and like I can totally deal with this.  I also had another therapy session today, and it has been so wonderful.  It has eased my anxiety with the new diagnosis, and just given me a better outlook.  I am so hopeful now.   I would encourage anyone going through this, or really anything life changing event at all, to not hesitate to seek out some help.  Admitting you need help, or seeking out guidance or advice is not a weakness, and you should not be ashamed.  There is no reason to take it all on yourself.  I can't even express enough how much it has helped me so far.  Just to see i am not alone, and that my feelings and concerns are normal, means so much.  

I am starting to see my way out of this tunnel.  I see that I am not alone.  I see that my life isn't over.  I see that i can  still accomplish anything I put my mind to.  I  see that there will be challenges, but I will overcome them.  I see a fresh start in my life.  I see positivity.  I will be dancing till the world ends!  No matter what challenges I face in life, or what I have to overcome, I will keep dancing.  Never give up!

For the record I do NOT believe in any of that nonsense that the world is ending tomorrow, but I was giggling to myself that I was listening to this song. Besides didn't the world end in Y2K?  haha  Morons.  Anyway, back to the song, keep on dancing till the world ends...Good message again though, no matter what don't ever stop dancing/loving/living your life.  Stop worrying, and just live.  If you feel it let it happen...keep on dancing till the world ends...

"Till The World Ends"

This kitten got your tongue tied in knots, I see
Spit it out cuz I'm dying for company

I notice that you got it
You notice that I want it
You know that I can take it
to the next level, baby
If you want this good shit
Sicker than the remix
Baby, let me blow your mind

I can’t take it, take it, take no more
Never felt like, felt like this before
Come on get me, get me on the floor
DJ what you, what you waiting for?

Woah oh oh oh oh oh ohhh. [8x]

Watch me move, when I lose, when I lose it hard
Get you off with the touch dancing in the dark

You notice what I'm wearing,
I noticing you staring
You know that I can take it,
to the next level, baby
Harder than the A-list,
next one on my hit list
Baby, let me blow your mind


Woah oh oh oh oh oh ohhh. [8x]

See the sunlight, we ain't stopping
Keep on dancing till the world ends
If you feel it let it happen
Keep on dancing till the world ends
Keep on dancing till the world ends
Keep on dancing till the world ends

Woah oh oh oh oh oh ohhh. [8x]

See the sunlight, we ain't stopping
Keep on dancing till the world ends
If you feel it let it happen
Keep on dancing till the world ends 

Thursday, May 19, 2011

Shots Shots Shots Shots Shots Shots Shots Shots Shots, Everybody!!!!!!!!!! Shots...

That's right, when I was preparing my shots tonight, I couldn't get the "shots" song out of my head.  I mean who doesn't think of Lil Jon when trying to take care of your health?  For good measure at the end I yelled out "Whooooooowhat????????  Yeah!  OK!!!!!!!!!!!!!!"  LOL  Now that is how the shared solutions nurses should teach people how to give themselves injections.

Step One:  bust out out your ipod or boombox if you are kicking it old school, and play "shots" by LMFAO ft Lil Jon
Step Two:  Wash hands
Step Three:  Apply warm compress to area
Step Four:  Clean area with alcohol wipe
Step Five:  Prepare autoinject device
Step Six:  Press play
Step Seven:  Take two shots 
Step Eight:  Rock out to "shots"
Step Nine:  Give yourself shot with autoinject
Step Ten:  Yell at the top of your lungs "Whoooowhat?   Yeah!   OK!!!!!!!!!!!!"  Then apply cold compress.

That would be Copaxone 101 according to Lil Jon.  Easy Peasy!

So tonight's shot wasn't the most pleasant experience in the world.  It was my night to do my right hip area, which I have done before, but apparently tonight, I picked the wrong spot.  I normally don't get a lot of pain when the needle actually goes in, but tonight I did.  I got shooting pains down my legs, and then the usual burning began, and lasted for about 20 minutes.  There is a bit of a welt there, and the site is red.  Hopefully it will heal tonight.  I haven't really noticed any marks in my whole 11 days on copaxone.  The sites that caused me a bit of trouble up until now are my thighs.  Both thighs hurt SO bad when I injected and left bruises.  I am sure this will all get easier over time.

Today was overall a pretty good day. Perhaps  it was that pertinent info about knowing Jerry Lewis was on my side that made all of the difference, or maybe I am just starting to adjust to things.  Yeah, who are we kidding, it HAD to be Jerry Lewis.  Seriously though, I seemed to be in a good mood all day, despite being at work, despite feeling the fatigue.  I kind of just felt at peace most of the day.  That is a GOOD feeling.  Scratch that, GREAT feeling.  I didn't even throw up this morning, which is a win in itself.  I suppose looking at the bright side of things definitely has it's advantages.  Score one for positivity!  On top of it all the weekend is here, so that means lots of relaxing time, destressing time, fun time, and reflecting time.  So hop on the positivity train as we head into the weekend!  All aboard!  Toot toot!  Yeah I'm lame as hell.  lol  In the spirit of shots...

When i walk in the club 
All eyes on me 
Im with the party rock crew 
All drinks are free 
We like ciroc 
We love patron 
we came to party rock 
Everybody its on 
Let's go 

Shots shots shots shots shots shots 
shots shots shots shots shots 
shots shots shots shots shots 

Before I go, I will leave you with this little gem...I couldn't leave you hanging

Wednesday, May 18, 2011

The show goes on...

Alright already the show goes on all night til the morning we dream so long...I have been listening to this song non stop.  I love it.  The more I listen to it, the more I think about everything I'm going through, and my life in general.  Yes, it's catchy and has a good beat, but I think it has a great meaning too.  I think this message is something that I probably need to hear especially when I'm feeling low.  

Basically, no matter what you are going through, no matter how bad things get, or what you have been through in the past, the show goes on.  Life goes on.  You can overcome anything, you just have to put your mind to something and do it.   Be the best person you can be, go after your dreams, put your heart into everything you do, and never give up.  No matter what challenges you face, never give up.  We all have obstacles in our lives, but that doesn't mean that life stops or that we can give up.  We have to push through no matter what. 

It's easy to give up, to make excuses as to why we can't accomplish things.  It's easier to say "I can't because..." than it is to say "I can and WILL because..."  When we say that we can and will we actually have to follow through.  Following through is hard, especially when life gets in the way.  Life ALWAYS gets in the way.  Not to say that we can't have limits when we are having bad days, we obviously will, but it's important for me to remember that I can't give up on my dreams.  I can't put things on hold, just because I am sick.  I can't spend every moment away from work in bed.  The show goes on...I need fun, I need a life, I need to follow my dreams.  I want to look back on my life years down the line and have fond memories to look back on.  

This song makes me think about all that.  It makes me think about my life, and think about all of the things that I want to accomplish.  I can be in the worst mood, and this song totally picks me up.  It's so positive.  I guess music has a much bigger effect on me than I ever realized.  It gives me hope, it makes me happy, it makes me want to get up and want to dance, it makes me think, it makes me reflect, and it just makes me smile.  I think music can do so much for me.  That is why I will probably post lots of songs in a lot of my posts, because music mimics life.  Music is life.  I am not just posting random songs, I am posting songs that I feel apply to my life at that moment.  It helps me.  It heals me.  

So for the rest of the week, I am going to try to make a list of things I want to accomplish, things I want to do, a realistic list, and actually put a plan in place to do these things.  I have to remember to respect my limitations, and not push myself, but to always remember the show  goes on...

Alright already the show goes on
All night til the morning we dream so long
Anybody ever wonder when they will see the sun up
Just remember when you come up the show goes on
Alright already the show goes on
All night til the morning we dream so long
Anybody ever wonder when they will see the sun up
Just remember when you come up the show goes on

(Verse 1)
Have you ever had the feeling that you was being had
Know that shit that make you mad
They treat you like a slave
Put chains all on your soul
And put whips up on your back
They be lying through teeth
Hope you slip up off your path
I don’t switch up off I just laugh
Put my kicks up on they desk
Unaffected by they threats
Then get busy on they ass
See that’s how that chi town made me
That’s how my daddy raised me
That glitterin may not be gold
Don’t let nobody play me
If you are my homeboy
You never have to pay me
Gon and put your hands up
When times is hard you stand up
LUPE the man
Cause a brand that the fans trust
So even if they ban us
They’ll never slow my plans up

Alright already the show goes on
All night til the morning we dream so long
Anybody ever wonder when they will see the sun up
Just remember when you come up the show goes on
Alright already the show goes on
All night til the morning we dream so long
Anybody ever wonder when they will see the sun up
Just remember when you come up the show goes on

(Verse 2)
One In the air for people ain’t here
Two in the air for the father that’s there
Three in the air for the kids in the ghetto
Four for the kids that don’t wanna be there
None for the niggas tryna hold them back
Five in the air for the teacher not scared
To tell those kids that’s leaving in the ghetto
That the niggaz holding back
That the world is theirs
Yea yea the world is yours
I was once that little boy
Terrified of the world
Now I’m on a world tour
I will give up everything
Even start a world war
For these ghetto girls and boys, I’m rappin round the world for
Africa to New york
Haiti then I detour
Oakland down to Auckland
Ghaza strip to Detroit
Say hip hop on a destroy
Tell him look at me boy
I hope your son don’t have a gun, and never be a D-Boy

Alright already the show goes on
All night til the morning we dream so long
Anybody ever wonder when they will see the sun up
Just remember when you come up the show goes on
Alright already the show goes on
All night til the morning we dream so long
Anybody ever wonder when they will see the sun up
Just remember when you come up the show goes on

(Verse 3)
So no matter what you been through
No matter what you into
No matter what you see when you look outside your window
Brown grass or green grass
Picket fence or barbed wire
Never ever put them down
You just lift your arms higher
Raise them til your arms tired, let em know your there.
That you struggling, surviving that you gon persevere yea
Aint nobody leavin, nobody going home
Even if they turn the lights out, the show is going on

Tuesday, May 17, 2011

"At least Jerry Lewis is on your side..."

Some days, all you can do is laugh.  Not just chuckle, but truly laugh.  Laugh so hard you almost cry.  I have been so stressed out at work lately, but I have taken to the attitude of just doing my best.  That is all I can do.  I was a little stressed out today, but taking it in stride, and I got a phone call from a co worker in a different state.  She inquired about my health, after our work jib jab, and asked if I had a firm diagnosis yet.  I replied that, yes I did, Multiple Sclerosis.  She replies "oh, I am so sorry, but at least you have Jerry Lewis on your side..."  Now keep in mind that my brain isn't fully operational, and a tad delayed.  I giggled a bit, and I didn't even compute what she said.  We said our goodbyes, and as soon as I hung up, I realized what she said.  Jerry Lewis?  Jerry Lewis???? Ohhhhhhhhhhhhhhh the Telethon guy for Muscular Dystrophy....LMAO.  She thought I had MD, not MS. 

So I laughed, and laughed.  Laughter is probably the best medication we can take.  Sometimes laughing is all we can do.  All we can do to hold it together, when everything seems like it's falling apart.  The MS might have taken my energy, it might have taken my memory, and a few other things, but it WON'T take my sense of humor.  The MS has already taken my direction with this post.  LOL  I have completely lost my train of thought, but it's all good.  Just as the lady said today, I just have to remember "at least Jerry Lewis is on my side."  Whenever I have a bad day, i will just think of Jerry.  LOL

My shots went ok tonight, I got it in on the first try, and I have officially given myself 8 successful shots.  The shot itself is ok, but almost immediately after it stings so bad for about 15 minutes.  Again, I can deal with this, because I know that there are so many worse things that people are dealing with.  It's not pleasant, but it is bearable.  As far as symptoms go, today was ok.  I actually woke up not sick, just had some major fatigue, but that seems to be normal these days. 

Yeah see my focus on this post has completely went out the window.  I feel like I am just putting a bunch of random words on this entry.  Which I guess mimics my life  lately, trying to put random pieces together, and they end up not making sense. 

I guess my advice to anyone else going through this, is just to know that this just comes with the territory.  Take one day at a time, do research, but not too much, take care of your health, keep stress to a minimum, find your "new normal", recognize that you are going through a huge life changing thing, and don't feel guilty about it , STAY POSITIVE, breathe, LAUGH, live your life, and most importantly ALWAYS REMEMBER that no matter how bad things get that Jerry Lewis is on your side... :)

Monday, May 16, 2011

Breathe (2 am)

Just breathe...It seems like a simple enough concept, but these days I need a constant reminder to "breathe, just breathe."  Truth be told, I need a constant reminder to do pretty much anything, but especially breathe.  Ever since the diagnosis, my life seems to be spinning out of control.  I feel like I'm holding on to everything I have walking on a tight rope, just waiting for it all to come crashing down.  I know it sounds a tad dramatic, but I feel like I am losing or about to lose everything.  In my head I know that isn't true, but I can't help but let these thoughts creep into my head.  My life has just been totally turned upside down.  I went from thinking everything was fine, to trying to come to terms with the fact that I now have a lifelong disease in which there is no cure.  Talk about overwhelming. Breathe, just breathe, ohhhhhh breathe, just breathe...

I know I need to take a step back and just breathe.  I realize this isn't the end of the world, and there are so many worse things that I could be diagnosed with, but it doesn't make it any less hard.  It doesn't make it any less hard to JUST want to sleep, because the fatigue is unreal.  It doesn't make it any less hard to wake up every morning sick with the nausea and vomiting.  It doesn't make it any less hard to get through the day without feeling like I am going to collapse.  It doesn't make it any less hard to not remember what happened yesterday.  It doesn't make it any less hard to have to pause when someone asks me a simple question like "What is your name?"  It's not that I don't remember, but it's like my brain can't multitask anymore.  It can't think of the question, compute it, and then come up with the answer.  I have to process the question, think for a minute, and then give an answer.  Breathe...

I have realized that I need to just take a little extra time.  Don't put so much pressure on myself.  Don't stress over the small stuff.  So what if I have to ask someone to repeat a question.  So what if it takes me a little bit longer to do something than it did before.  So what if I have to write reminders or have to take a few extra naps.  I have realized that I CAN'T stress about the small stuff.  I can't get all worked up over something silly, because that causes my symptoms to be worse.  My health is more important to me than this petty stuff that I am worrying about. 

I am going to get through this.  This IS going to make me a stronger person.  I will NOT give into this mess (MS)  None of us should.  We can all beat this.

My goal for this week is to just breathe.  When my head starts to get the best of me and my worries take over, I am just going to stop and breathe.  So, I will leave you with my theme song for the night...

"Breathe (2 AM)"

2 AM and she calls me 'cause I'm still awake,
"Can you help me unravel my latest mistake?,
I don't love him. Winter just wasn't my season"
Yeah we walk through the doors, so accusing their eyes
Like they have any right at all to criticize,
Hypocrites. You're all here for the very same reason

'Cause you can't jump the track, we're like cars on a cable
And life's like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe... just breathe,
Oh breathe, just breathe

May he turned 21 on the base at Fort Bliss
"Just a day" he said down to the flask in his fist,
"Ain't been sober, since maybe October of last year."
Here in town you can tell he's been down for a while,
But, my God, it's so beautiful when the boy smiles,
Wanna hold him. Maybe I'll just sing about it.

Cause you can't jump the track, we're like cars on a cable,
And life's like an hourglass, glued to the table.
No one can find the rewind button, boys,
So cradle your head in your hands,
And breathe... just breathe,
Oh breathe, just breathe

There's a light at each end of this tunnel,
You shout 'cause you're just as far in as you'll ever be out
And these mistakes you've made, you'll just make them again
If you'd only try turning around.

2 AM and I'm still awake, writing a song
If I get it all down on paper, it's no longer inside of me,
Threatening the life it belongs to
And I feel like I'm naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you'll use them, however you want to

But you can't jump the track, we're like cars on a cable,
And life's like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.

Sunday, May 15, 2011

Over My Head (Cable Car)

April 8th and April 26th are two days that will be forever etched into my failing memory.  I don't remember much these days, but those two days will always stand out in my mind as "the ms" began.  April 8th, 2011 is the day my neurologist told me that I most likely had MS.  If it walks like a duck and quacks like a duck, it's a duck.

I walked into her office with my blood work and brain MRI in hand, hoping for some answers.  Hoping that I wasn't crazy.  Hoping that this terrible fatigue I have been feeling would go away.  Hoping that I could wake up in the morning without the nausea and without the vomiting.  Hoping my memory would return. Hoping for a day that I could feel like me again.  Hoping that I could be normal.

I was a little nervous because this was my second neurology appointment in less than a week.  The first one left me confused, scared, and feeling like maybe it was all in my head.  I met with the first guy who was nice enough, and very funny, but left me uneasy.  His bedside manner wasn't the best, and I am thankful to this day that I got a second opinion.  Even though my brain MRI showed multiple lesions, he said it was BS.  The radiologists were wrong. I was so young, and my brain wasn't all that exciting, he was hoping to see lots of injury, and to come back when I was numb all over.  Hmmmm ok.  So people around me urged me to get a second opinion, including my primary care dr., and I did.  I got an appointment with an MS specialist, and thank goodness I did.

So here I am waiting in her office, waiting to go back, and expecting to hear that it was all in my head and nothing was wrong.  I went back and she was so kind, and listened to me, I mean really listened.  She then put my scans up to see, and said that it looked like classic MS, paired with some of my "episodes", which at the time I thought were nothing.  Months ago my vision went blurry for about 2 weeks.  I thought nothing of it, and chalked it up to bad contacts, and then maybe the bad contacts gave me an eye infection.  I figured it would pass.  Right before I was getting ready to mention it to my Dr, low and behold it went away, so I never mentioned it until this appointment.  I also had a small episode where my left pinky went numb all the way down to my wrist, just my pinky.  Again, I thought maybe I pinched a nerve or something.

Then of course there was the biking accident, where I managed to crash in slow motion, but my legs just gave out.  Then when I was getting out of the limo at Erica's wedding I lost my balance and sprained my ankle.  All of these things were starting to add up.  This Neuro saw it.  She saw the big picture.

She sent me in for a cervical spine MRI, the dreaded lumbar puncture, and told me to review a bunch of information on what kind of MS treatment I would like to move forward with.  Needless to say this was so incredibly overwhelming.

Then we go to April 26th, the day of my official diagnosis.  The day when she went over my results with me, my elevated igg levels from my lumbar puncture, and my cervical MRI results which showed 4 or 5 more lesions. An official "Multiple Sclerosis" diagnosis was made. I have MS.  I have MS!  I have MS?!?!?!?!?!

So overwhelming.  I couldn't break down there at that point.  It hadn't sunk in it.  I was in disbelief.  After all these months of being sick, I knew something was wrong, but I never in a million years expected MS.  NEVER.  It hit me like a ton of bricks that weekend.  I cried and cried for hours.  Just thinking that I now have a  disease in which there is no cure, that I will now have for the rest of my life.  It sent me into a tailspin.

I was angry, I was scared, I was sad, I was in denial, I was in disbelief, I was anything but happy.  My emotions were, and still are all over the place.  I was in over my head.  I cried, and listened to music, and this song really stood out, "over my head" by the fray.  I was completely in over my head.  This is my theme song for the month of April 2011. Listen to it...

Over My Head (Cable Car)"

I never knew
I never knew that everything was falling through
That everyone I knew was waiting on a cue
To turn and run when all I needed was the truth
But that's how it's got to be
It's coming down to nothing more than apathy
I'd rather run the other way than stay and see
The smoke and who's still standing when it clears

Everyone knows I'm in
Over my head
Over my head
With eight seconds left in overtime
She's on your mind
She's on your mind

Let's rearrange
I wish you were a stranger I could disengage
Just say that we agree and then never change
Soften a bit until we all just get along
But that's disregard
Find another friend and you discard
As you lose the argument in a cable car
Hanging above as the canyon comes between

Everyone knows I'm in
Over my head
Over my head
With eight seconds left in overtime
She's on your mind
She's on your mind

Everyone knows I'm in
Over my head
Over my head
With eight seconds left in overtime
She's on your mind
She's on your ...

And suddenly I become a part of your past
I'm becoming the part that don't last
I'm losing you and its effortless
Without a sound we lose sight of the ground
In the throw around
Never thought that you wanted to bring it down
I won't let it go down till we torch it ourselves

And everyone knows I'm in
Over my head
Over my head
With eight seconds left in overtime
She's on your mind
She's on your mind

Everyone knows
She's on your mind
Everyone knows I'm in over my head
I'm in over my head
I'm over my...

Everyone knows I'm in
Over my head
Over my head
With eight seconds left in overtime
She's on your mind
She's on your mind

My life is not MS (a mess)

My life as I know it is over.  No, this isn't going to be all doom and gloom, my life is over, because I was just diagnosed with a disease kind of post.  My former life is over, but my new life is just beginning.  My "Messy/MS'y" life has just begun.  I am trying to look at this as a fresh start.  No, I didn't want to be diagnosed with a disease with no cure, but I am and I have to accept it.  This is my chance to start fresh, my chance to do something with my life.  My chance to maybe inspire others, and help others come to terms with their new diagnosis.

I am not even sure that I can be someone to help anyone, because I am a "newbie", but I can certainly try.  If I can just let one person know that they are not alone going through with everything they are going through, then I did my part.  Just being there for one person, making them not feel so alone, making them feel like someone does care about them, then it's worth it.

MS won't define me, but it is now a part of me.  I am starting this blog just to document my MS journey, and hopefully help some people along the way to know that they aren't alone.  We will beat this thing, MS won't beat us.