Hello Again!

So... Rebismart and I have made up.  We're friends again.  I started back on my Rebif last week, but I'll stick to 22mcg for awhile and see how my teeth problem works out.  So far so good, and I even did my last two injections BY MYSELF!  In my stomach no less.  During my two weeks off, I had some time to reflect on everything.  If this is all I need to worry about, and it's helping me, and giving me a better future, I need to suck it up.  I think I already knew this ;)

Good things are happening in my life.  The MS Walk took place on Sunday and was an AMAZING success!!  We woke up to pouring rain and I was convinced that some of my team mates may have cancelled - but to my surprise, everybody showed up!  Everybody had rain coats and umbrellas and huge smiles.  The MS Society handed out these signs that everybody was supposed to pin to their coats that read "I'm Walking for _______".  When I saw that people were writing Sarah, I have to admit I teared up a little bit.  Good thing it was raining and nobody noticed!!

We raised $2,479.82!!!!  We were the 7th highest fund raising team in Vancouver.  I think that's something to be proud of!!!  I will definitely participate in this event next year, and perhaps volunteer my time on some of the other events that the MS Society holds throughout the year.

I have also been invited to to attend the MS Ambassador Program Advisory Board in Toronto May 5 and 6th.  I received an email letting me know that all costs are covered (flight, hotel and food!) and I let them know that I would LOVE to attend!  The only downside is that currently I would fly in Thursday May 5th, stay overnight, attend the meeting Friday morning and fly back to Vancouver that afternoon!  I get tired VERY easily and I'm sure that 10 hours of flying in two days will ZAP me.  I'll worry about it once I receive confirmation of the flight arrangements etc.  Even though they've told me that I'm confirmed, I'm a little hesitant to get excited until everything is arranged.

Basically, life has been BUSY which is why I haven't been posting as much as I did in the past.  On top of everything I mentioned above, I have a 3 day camping trip coming up!  Road trips and camping are my absolute FAVOURITE THING in the world.  Out of all the trips I've been on, my favourite trip was a road trip we took to Oregon and back through Washington to Mt. St. Helens.  I had a migraine from hell for the ENTIRE trip, and one day after getting back had a major flare up and ended up in the hospital.  Despite feeling like crap for the entire trip, it's something I'll always remember.  Our next camping trip will be to Cape Disappointment in Washington.  Sounds great right?!  It's actually extremely beautiful, we'll be camping on the beach with the dog, and I can't wait.

After Toronto and Cape Disappointment, I'm heading to Vegas!!!!  I have a feeling I'm gong to be exhausted for the next four months.  It will be worth it though!!!!!

That's all I have for now.  It's time for Rebismart and I to hang out for a little bit. 

~Sarah

Oh yeah - I forgot!

My team for the 2011 MS Walk in Vancouver is SOOOO CLOSE to our $1500.00 goal!!!
 
Please help us reach our goal!!!!!  You can pledge us at https://msofs.mssociety.ca/2011walk/Donate.aspx?PID=1267890&L=2&G=700175 .

THANK YOU!!

~Sarah

No needles for now!

My neurologist has pulled me of my Rebif for two weeks.   Wednesday made one week since my last injection, so I have another 6 days of relaxation and no pokes.  My tooth problem has calmed down a little bit, but is still around.  I'm only noticing blood when I brush my teeth now - still gross, but much better.

Nothing new going on.  Work is work as usual, my energy levels are great, things are going pretty well.

I will post again once I find out whether or not I'm going back on Rebif.  I'm hoping I do - it's familiar and relatively convenient when you compare it to my other options.  I guess I'll find out soon enough.

~Sarah

I knew I was right!

I went to a different dentist on Thursday, and what a difference.  As I suspected, there is absolutely NOTHING wrong with my teeth.  No cavities, gum problems, nothin.  I have a very healthy mouth with very healthy gums and teeth.  The dentist poked around a bit, and said that the amount of blood she noticed would not be as a result of anything in my mouth and she thinks it's the Rebif.  She wouldn't do the cleaning until my neurologist said it would be ok to start poking around in there.  Because of the amount of blood, it would be a messy job.  SO GROSS.

My neurologist sent me for another blood test - this time to test my blood coagulation.  In the meantime, he's pulled me totally off my injections.  I skipped yesterday's injection, and while I thought I'd be happy about it, I'm definitely not.  I need to do anything I can to prevent any damage cause by the MS.  It was nice not having to poke myself, but I wish I didn't have all these issues going on.  My neurologist was supposed to call me on Friday and let me know if I could continue, but he didn't so I'm hoping I hear back by Monday so that I know whether or not I should start again.  I noticed a significant difference in the amount of bleeding when I dropped down to the 22mcg.  Maybe I can stay on 22mcg?  Regardless, the dentist did say that a good cleaning will help reduce the amount of bleeding, but it won't stop it.  I guess we'll have to wait until I hear from the doctor.

Nothing else new right now.  I received my Kobo in the mail yesterday and was super stoked!  THANK YOU MS SOCIETY!!  It's awesome, and I've already read an entire book on it.  I love it!

Now, as for my MS Walk Team - WOOOOWWWZA!  We have raised over $1300!!!!!  Can't wait to see how the other team members do as some have not started collecting pledges yet.  Very exciting, and very cool!!

Well, it's almost Earth Hour so I'm going to shut everything down, and go chill in the dark for a bit.

Good night!!

~Sarah

TMI on the tooth blood? Gross - but I win!

It's been awhile, so this could be long.

Well, I'm back down to 22mcg.  Things were going great, I felt fine however I noticed that my gums were bleeding - a lot.  I would wake up in the morning, and spit blood... noticed blood in my mouth throughout the day.  Enough that it was totally grossing me out, and in the mornings I would feel a little nauseous from waking up to blood in my mouth.  Gross right?!

I called Multiple Support who instructed me to call the MS Clinic, who in turn sent me for a blood test and told me to change the dose back to 22mcg.  The nurse at Multiple Support was amazing as usual.  She went through all the information on side effects and couldn't find anything on bleeding gums so she told me that she would contact someone else, and email me.  Sure enough, my Blackberry alerts me to an email today where it stated there were a small small amount of reported cases similar to mine, but not enough that they were noted on side effects.  Of course, only I would get the one side effect that nobody else gets.  I get none of the super common ones, and only get the super strange one.  Regardless, it might not even be associated with the medication.  We haven't figured it out yet!

My blood test came back completely normal, so I'm waiting to hear back from my neurologist regarding whether or not I'm supposed to go back up to 44mcg or what the deal is.  In the meantime, I was instructed to go to a dentist and get checked out.

Convenience is not always the best reason to choose a dentist.  I learned that the hard way today.  There is a dentist office in the same building as my office, so I booked an appointment for a cleaning and check up/exam for my lunch hour.  1.5 hours later I'm still sitting in the chair and only had xrays done (and a ridiculous amount of them at that).  The doctor came in and told me that my teeth where in terrible condition.  This is ridiculous - I have great dental hygiene and have never even had a cavity in my life.  He then proceeded to tell me I'm grinding my teeth down to nothing and my enamel is shot and I need some super expensive retainer to prevent any more damage.  What a crock of you know what.

I told them I had to go back to work and would have to skip the cleaning.  They scheduled me an appointment for Friday, which I agreed to but planned on cancelling and never going back.  Well, when I got back up to my office and looked at the bill (which I already paid) I noticed they had PRE BILLED me for the appointment on Friday.   By this time I had already found a good dentist (based on online reviews) and booked an appointment with them on Thursday.  This new dentist office actually called the one I went to today, cancelled my Friday appt for me and transferred all the xrays over.  I had to call my insurance company and tell them not to approve any claims because I DID not have an exam, I only had xrays!  And now I have to go back to this place tomorrow to get a refund for the exam that they pre billed me for.  THE WORST!  I did not need all this aggravation right now - not to mention that I have to switch my days off around and take Thursday off to go to this new appointment.  I am NOT enjoying being an adult right now hah 

Other than all that crap, things are going pretty well.  My energy levels have been pretty much normal lately with no Alertec!  I'm not sure if I'm getting more restful sleeps or what the deal is, but I'm not complaining.  Perhaps the best news is that my team for the 2011 MS Walk in Vancouver is KICKING BUTT!  We have raised $865.00 as of writing this post!  Our original goal was $500.00 and we've blown that out of the water.  Our new goal is $1500.00!!!  If anybody is interested in pledging me, you can do so at the following page:

http://msofs.mssociety.ca/2011walk/Sponsor.aspx?PID=1267890&L=2

Any donation, even $1.00 TOTALLY helps and goes to a great cause.  Hopefully one day this disease can be cured, or prevented. 

I also want to take this time to thank those who have pledged me, and to those who have pledged my teammates!!!  You guys are amazing!!!!   I couldn't ask for better friends, family, and even strangers!  Thank you Thank you Thank you!!!!!! Oh yeah, THANK YOU AGAIN!!!!!!!  <3 <3 <3 <3 <3 <3 <3

The MS Society called me yesterday and gave me some very unexpected news.  Apparently there was a draw that took place which included all the Team Captains for the MS Walk this year and my name was chosen!!!  I never win anything, so this is very exciting to me!!!  My prize is a new Kobo reader.  I have wanted one of these since they came out, and I actually bought my lovely boyfriend one for Christmas.  I was VERY jealous of his, and now I have my own.  THANK YOU MS SOCIETY!!!  This was very unexpected (I didn't even know there was a draw!!!) and VERY APPRECIATED!  Very cool - thank you so much!!!!

And now for the super fun part - I'm going to Vegasssssss!  My boyfriend and I love Vegas, and we went a couple times last year.  He's planned a trip for us in May which includes an overnight cruise, and 2 nights in Vegas!  I can't wait!  The only thing I'm nervous about is travelling with my Rebif.  My doctor said I could skip it, but honestly I don't want to skip a dose if I don't have to.  Does anyone have experience travelling (specifically flying) with your Rebismart??  I'd be interested to know how it went, and what you brought with you!

That's all I have for now, I'm runnin out of gas and my dog is giving me the "ok enough already it's bedtime" look.  Good night!

~Sarah

These boots were made for walkin!

I apologize for the lack of posting.  My Rebif injections are going swimmingly with my lovely nurse boyfriend!  He does almost all of my injections, and aside from the red spots, I feel ok!  Still no side effects.  I'm finding that I'm easily tired, but I'm managing it by eating well, taking vitamins, and the odd Alertec.  So far so good!  The Arnica gel is really helping with the red spots - if I get a red spot at all, it's more of a faint pink mark that fades relatively quickly.  I have a few spots that have a small purple bruise where the needle went in, but nothing as bad as I previously experienced.  I am a very lucky person.

Tonight was a small milestone for me!  My boyfriend wasn't here tonight so I couldn't depend on him to help me out.  I sat on the couch, got the Rebismart ready, and off I went!  I did a stomach injection totally by myself with almost no whining or complaining.  I didn't give myself enough time to freak out - I just pressed the button and was done with it.  I found it much easier to do the stomach injections while sitting up.

As a way to give back to those who have supported me, and those currently going through the same things I am, and for those who are worse off, better off, and anyone touched by MS - I have decided to put together a small team to participate in the MS Walk here in Vancouver.  The walk takes place on April 10th.  If anybody lives in the area and wants to participate, I would LOVE to have more team members!  Please contact me by commenting on this post and I will point you in the right direction to join my team.  For those of you that cannot participate but would like to pledge myself or my team, you can do so online directly through the MS Society at:

http://msofs.mssociety.ca/2011walk/Sponsor.aspx?PID=1267890&L=2

Any donations are GREATLY AND AMAZINGLY appreciated!!!!!  I will give shout-outs on my blog to anyone that donates, and by donating please know that I am eternally grateful.  The MS Society is extremely important and does so many great things for the community.  Without the MS Society, I would have nowhere NEAR the amount of support that I currently have.

Thank you to everyone for your continued support!!

~Sarah

Ok I'm back!!

My hand is healing nicely!!  The splint didn't last long.  It was SO annoying to wear, I couldn't type, I couldn't walk the dog, I couldn't open a door... nothin.  It's almost been two weeks, and other than being a little stiff and sore I think I will survive!!

My energy levels have been pretty low this week.  I think it's the weather!  It goes from being sunny to rainy, spring to winter - Mother Nature cannot make up her mind.  I am still Rebif side effect free!!!  This is a huge relief to me.

As some of you may remember, my biggest complaint was the nasty red spots that I got after every injection.  The small red marks turned into GIANT red marks when my dose went up to 44mcg.  The spots were driving me crazy and I was not impressed.  I did some research online and learned about this stuff called Arnica Gel.  It's made out of daisies and herbs and is used for sore muscles and bruises.  It smells horrible, but it WORKS!  I rub it on every injection site, and my huge red spots never appear!!!  So far I've used it for my past three injections, and I'm spot free for all three.  I highly recommend it for anybody that is having the red spot issue with their injections.  If you can deal with the smell until it dries, go buy some!

I had my neurologist appointment the day after I broke my hand.  As always, the office was running an hour behind.  I don't know why I continue to rush there for my appointments when they have not been on time once for my appointments.  They even lost my spinal tap appointment after I had booked the day off work, arranged for a ride and for my boyfriend to look after me.  We got there, and they said they didn't have my appointment written down.  Luckily they pencilled me in, but still!!  Anyways, my appointment this time went great.  My spinal MRI came back with NO lesions, everything looks normal and good.  I should have asked about the arteries in my neck, but I figured since he didn't bring it up that there was probably nothing there.

I've made some really great changes in regards to my diet.  Trying to eat healthy lunches, avoiding high fat/salt foods.  Making sure that I'm eating breakfast, lunch and dinner.  It's HARD!  I've cheated a couple times with some sweets/candy, and McDonalds for dinner last night hah but I'm definitely better than I was in the past, and it can only mean good things for me!  I need to concentrate on getting more exercise now - but it's hard when you're so tired!! ARGHHH.  I should really be taken my Alertec more often.

Now here's the best story.  My last four vials of Rebif cost $700.00 after my insurance went through.  Actually it was $800.00 until I complained to the pharmacy and they knocked $100.00 off.  Before insurance it was $2040.00.  I decided to take my prescription to few different places and see what kind of prices I was offered.  Save-on grocery was around $1800.00, and Costco was $1600.00.  HOW IS THAT POSSIBLE?!?!!?  A $440.00 difference between a People's Drug Mart and Costco?!?!?!  I was so furious at People's Drug Mart when I found out the price difference that I transferred every last prescription to Costco and I'll never use the People's Drug Mart Pharmacy again.  Talk about taking advantage of sick people.  It makes me want to throw up.  Since Fair Pharmacare (the insurance I get through the province) is paying a higher percentage now my monthly Rebif supply cost me a whopping $104.00!!!  That's manageable.  I think it will be cheaper the next round because each time I fill the prescription Fair Pharmacare covers a higher percentage but I'm not exactly sure.


That's all for now.  I worked late tonight, and I'm ready to sink into my comfy bed with my dog, my cat, and an iPod full of podcasts.

~Sarah

Just about to go to bed, and I see this!  http://www.vancouversun.com/health/First+oral+treatment+approved+Canada+says+drug+company/4420028/story.html   Thoughts?