Livin' with MS

Hello Again!

2011-04-11T20:33:00.000-07:00

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!

2011-03-31T20:06:00.000-07:00

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!

2011-03-31T20:03:00.000-07:00

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!

2011-03-26T20:24:00.000-07:00

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!

2011-03-22T22:12:00.000-07:00

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!

2011-03-16T21:31:00.000-07:00

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!!

2011-03-10T22:01:00.000-08:00

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?

I'm alive!

2011-03-06T21:39:00.000-08:00

Still dealing with the broken hand... I will post soon! Promise!

~Sarah

Fall down go boooooom!

2011-02-28T21:47:00.000-08:00

This will be short and sweet - not because I don't have much to write, but because I broke my left hand. Yup... busted, broken, snap crackle pop!

We had a great time in Whistler! The zip line was amazing. Terrifying, but amazing. I'll include the video at the end of the post. On Sunday morning we were walking to breakfast in the middle of a snow storm and I slipped down a flight of stairs and landed right on my hand. We thought it was a sprain, but today my hand was super swollen and a mixture of green, grey, black and purple! Xrays confirmed - I broke two bottom knuckles and both fingers. Awesome. I have a temporary splint on now, and I go in tomorrow to get a cast or a more sturdy splint.

In regards to my injections, everything is going well. No side effects after the 44mcg dose. We injected into my leg tonight which was fine. My leg is still the most pain free location for injections.

I had my neuro appointment today - it went well!! I will post more as soon as my hand makes it possible to type more than 10 wpm. Enjoy this video of me flying 400 feet above the ground at 100km/h until I can post again!

~Sarah

44mcg - nice to meet you.

2011-02-25T21:40:00.000-08:00

Well the dreaded day has come - time to double the dosage.

Injection was fine. I tried to suck it up as much as I could, but there was some whining and pleading. My boyfriend doesn't fall for the whining anymore so he hit the button. This injection was different though. I've always had the stinging, but this was megaaaaa stinging! I guess more medication means more stinging?!

I don't feel that great right now. I have a little bit of a headache and I feel run down. Whether or not this is the result of a long day at work, or the medication I will probably never know. Hopefully I get a full night sleep and I wake up feeling great.

I need to feel great tomorrow because my boyfriend is taking me away for the weekend!!!! We're heading up to amazing Whistler BC for a weekend of Zip Lining, snow tubing, shopping and exploring the village. We're staying at the Delta Whistler Resort and we have a 1 bedroom suite right in the village which is the best place to be!!!

I can't wait to get away from the city for the weekend!! I booked Monday off of work for my Neurologist appointment, so it's ALMOST like having a three day weekend. Relaxation and sleep here I come!

I think it's bedtime for me. As excited as I am, I'm being aggravated by the smallest little things right now. That is the #1 signal for me that it is time to go to bed. Good night!

~Sarah

Hey Rebismart - Happy one month anniversary! NOT.

2011-02-24T20:20:00.000-08:00

One month has come and gone. 12 injections complete.

It's been a month of up and downs, but not nearly as horrible as I thought it would be. Now that my boyfriend does my injections for the most part, the anxiety has passed. Last night was the last 22mcg dose and I move up to 44mcg tomorrow.

It was time to move back to the dreaded stomach location. My least favourite place. It hurts, it stings, it leaves HUGE red marks. I hate it. My boyfriend set everything up, and didn't let me whine too much before he hit the button. Once again, 13 seconds feels like an eternity! It wasn't nearly as bad as my previous two stomach injections so I'm thankful for that. We've started doing it as soon as I get home from work. This stops be from being nervous and anxious all night leading up to the injection. I like doing it earlier, it's much easier on my nerves! Tomorrow night we'll do it as close to bedtime as possible though because I'm nervous that I will get some side effects with the double dose.

After my injection on Wednesday, the Rebismart told me that the cartridge was empty. I was only two 22mg doses in with that vial, so I remember what the nurse had told me and I took the cartridge out and shook it a little bit. I noticed there was an air bubble in there which freaked me out. I put the cartridge back in the machine, and the Rebismart rescanned the cartridge and said I was good to go for another injection. I called Multiple Support today and asked about the air bubble. The nurse told me not to worry about it because they over fill the vials, and the air bubble won't be injected. Whew.... I know I'm paranoid, but this is all new to me!!!

I need to get blood work done once a month for the first six months. Rebif can be hard on the liver, so the blood work determines how my liver in functioning etc. I'm not too worried about this in my case because I feel absolutely fine for the most part. I would think if my liver was doing something bad that I would feel something? Who knows. The lab by my house opens at 7am so I thought I was being smart by going there early today on the way to my train. Apparently I'm not the only smart person. The waiting room was PACKED with a 15-20 min wait.... if I waited I would have missed my train and been late for work. I have a very accommodating and cool boss, so she let me take off for an hour to go to a lab downtown. Well, the thing about labs downtown - they are FULL of junkies. It was a gross place to be, but it's over and done and my blood is being tested as I write this! Cross your fingers for me - hopefully the results are good!

My fatigue is setting back in, but not as bad as it was previously. I can make it through the day without taking an Alertec, but I'm on the couch as soon as I get home, and in bed by 10 at the absolute latest. Leading up to 10 I slowly turn into a sleep deprived zombie. I'm sleeping a little better on injection nights, but I still wake up several times through the night. I'm a chronic toss and turner as is - throw some Rebif in there and I'm all over the map (or bed.)

Bedtime for me - I will post tomorrow night after my injection. Wish me luck!

~Sarah

I didn't say when!!!!!

2011-02-21T20:45:00.000-08:00

After what happened on Friday night, I was not stoked on my injection tonight. Luckily work was busy, and I didn't have too much time to think about it. The minute I walked out the door from work and got on the commuter train, the anxiety started to set in.

My boyfriend was here to help me tonight. I was rattled from being here by myself, so he set up the Rebismart and I laid in my bed. I find it MUCH easier to do the injection if I'm comfy and surrounded by pillows and my big feather duvet!! He put the Rebismart on the lower side of my back where all the padding is. I felt the machine on my skin and once again came "don't hit the button yet! I'm not ready!" - He didn't wait until I was ready. He hit the button and the Rebismart started the injection. At first I was mad, but I knew if I moved or twitched it would be much worse. So I stayed still for 13 seconds which feels like eternity. As with Monday and Wednesday's injections last week I had no pain, slight stinging, and that's about it.

I'm happy that it's over with. A successful injection tonight helps me get over the anxiety of what happened on Friday! Hopefully Wednesday will be uneventful too!

Wednesday will be my last dose of 22mcg. On Friday my dose goes up to 44mcg which is the full dosage for me. So far I have had no side effects what so ever except for injection irritation and the lovely red splotches. My biggest fear with starting this medication was surprisingly not the needles. I was more worried about the aches, pains, and flu like side effects that I was told could accompany the injections for months! None of that as of yet. I'm hoping that it stays this way. I've been taking two regular strength Advil before every injection. I'm not sure if it's the Advil preventing me from feeling the side effects, or if I'm not even having them to start with. My body appears to be reacting to the medication fairly well. I'm crossing fingers that things keep going as well as they have been.

Life has been very uneventful and boring lately. I need to get away, even if it's only for the weekend. Bedtime now - zzZZzzZz My energy level has been lacking this past few days.

~Sarah

Well, that was unexpected!

2011-02-18T23:02:00.000-08:00

This is gonna be another long one.

One of my readers left a comment on my blog regarding the ingredients that make up Rebif. I'm not sure why I never looked this up before. I never look up ingredients on other medications I take. I guess I mostly concentrate on what the medication is supposed to do for you, or what the side effects are. Well - you learn something every day. Rebif is made of Chinese Hamster Ovarian cells. Yup. Furry little critters. Now, I didn't take this person's word for it. I looked it up, and sure enough they were right! It's not that I didn't believe them. Perhaps it was that I didn't want to believe them!!! Oh well, I'm too far in to go back now. I just have to shake this overwhelming urge to store food in my cheeks and run on a wheel. I shall survive!

Tonight was interesting to say the least. My confidence was at an all time high since my past two injections were perfect! No pain, no mark, no anxiety - I did it! So naturally, I assured my boyfriend he didn't need to be here tonight and that I could handle it myself.

I had originally designed a routine for myself so that I would not forget any of the steps I needed to take on injection night. However, because of the horrible anxiety I had been experiencing, my boyfriend was responsible for setting everything up while I stayed in the other room. This worked great - however since I hadn't done any of the set up this week, I totally missed a few steps.

It has been more than 7 days since I last injected my leg, so I decided I could inject again in my leg as long as I choose a different area. I totally forgot to clean the area. Nicceee. I put the needle in the machine and to my surprise the light started flashing red and the screen said "Check Needle." Fine - I took the needle out, and put a new one in. I didn't get any error messages, so I assumed it was fine. I was feeling a little on edge, so I called my boyfriend and put him on speaker so I could talk to him while I did it. I was confident, I was ready, and I hit the button. No pain going in... but holllllllllllllllly did it ever hurt comin out. I was just happy it was over, I lifted up the machine and was greeted by a quarter sized puddle of blood which promptly rolled down the side of my leg just as the machine decided to squirt a small stream of Rebif up my leg. I immediately freaked out, grabbed a Kleenex to wipe up the blood and thought I was going to throw up.

SERIOUSLY!!! Of all the nights for this to happen, the night I'm by myself was NOT THE TIME. When I looked closer at the injection site I could see a small but very purple/black lump forming. Because I'm a spaz who thinks I'm dying when I stub a toe, I grabbed some water, Advil, an Ice Pack and called Multiple Support. The messaging service took down my information, and a nurse called me back within 5 minutes.

Multiple Support is only open during business hours on EST. Anytime you need to talk to someone out of those hours, they have nurses on call. I'm assuming these nurses work from home outside of those hours, and as such I feel horrible. It's 1am there! I told her what happened, and she stated that the needle was most likely crooked or bent inside the machine. By this point, I had already discarded the needle in my sharps container and had no way of knowing what it looked like. When the needle was pulling out, it probably twisted and ripped some tissue. I told her that I thought I hit a vein, and she said that was rare and while I may have hit something that I shouldn't worry. It was most likely just an issue with the actual needle.

Nurse's orders: Ice pack for 5 minute intervals, and Advil for swelling/pain every 4 hours.

She let me know that I would most likely have a nasty bruise and that I need to pay close attention to the colours etc. This was not a fun night but the nurse assured me that this was most likely a fluke accident, and it won't happen again. Needless to say, I think I may be on edge when Monday rolls around and it's time to try again. I'm curious to know if anybody else using the Rebismart has experienced a similar situation??

I think it's time to go to bed. I am looking forward to sleeping in tomorrow - OH AM I EVER!

~Sarah

Things are lookin up!

2011-02-16T21:25:00.000-08:00

I am happy to report that for the second time in a row, I sucked it up. I've learned something this week - positivity = NO PAIN!

I've been doing it all wrong. As you can see from my recent posts, injections have been horrible for me. Not the after effects, but the actual act of the injection. I'd work myself up and let the anxiety get the best of me. By the time I finally did the injection, I was so worked up that it stung and hurt. These last two injections, piece of cake.

As with Monday's injection, I prepared myself in the morning. Told myself it wasn't going to hurt, and I'd be fine! It has been more than 7 days since I injected into my leg, so we originally decided that my leg would be a good place. My boyfriend talked me into trying a spot I hadn't done before, so we cleaned the little spot on my back above my butt. I was a little anxious because it was a new spot that I've never done, and I wasn't sure if it would hurt. But we did it quickly and TAAAADAAA! Best spot yet! I didn't even feel the needle go in and NO stinging!!!!

I really feel that my change in attitude this week has been the sole reason that things have become easier to deal with.

The red spots don't bother me nearly as much. They've all faded for the most part except for one. A couple injections ago I decided to try numbing cream. The red spot from that injection is BY FAR the worst. It's twice as big as the other ones, super bright red, and raised above the skin like a bug bite. Never again will I used the numbing cream!! I can't be sure if the red spot is just a bigger regular version of the red spot, or if the numbing cream had something to do with it. I won't risk it again though.

Other than that, all is good right now! Nothing new to report. I'm looking forward to my Neuro appt on Feb 28th to discuss the findings of my most recent MRI. This MRI is different than the ones I have had in the past as it was of my neck and spine, and was done to see if I have any clogged arteries or veins.

I hope all is well in cyber world!!! Keep commenting, I really enjoy reading everything!!

~Sarah

I win!

2011-02-14T21:03:00.000-08:00

I made a decision this morning. Something had to change. As you can see from my previous postings, I've been struggling with injection anxiety to the point where it was really having an effect on my life. This morning I decided, no more.

I forced myself to think about other things today. I concentrated on work, and looked forward to Valentines Day with my sweetheart. When injection time came around, I went and laid in my bed and while my boyfriend set everything up for me. Picked a spot on my arm, and he pressed the button with NO WHINING! And.. surprise surprise.. with no anxiety, no pain! Needless to say, I am pretty proud of myself right now.

I'm not a big Valentines person. I'm not big on the romance and mushiness that accompanies this holiday. That being said, today was perfect. My boyfriend got me the most amazing gift. He walked my dog this morning, after work, AND he's going to walk him before bed. This is the best. This means I got to take longer getting ready this morning, didn't have to rush back to walk him right after work, and I won't have to venture out in the rain before bed. THE BEST! Not to mention, I also was the recipient of a yummy home cooked dinner. I am a lucky girl!!!

And now for the mega cheese. I always make fun of these people who stick their photos in these tacky cheesy frames. So, here is my Internet tribute to Valentines day in a cheesy tacky frame:

Happy Valentines Day everybody!!

~Sarah

Done and Done!

2011-02-11T23:13:00.000-08:00

I knew tonight was going to be horrible. I was dreading it all day. I was fine up until I called Multiple Support to confirm the dosage, but after that call the anxiety came back and lasted the rest of the day.

I bought some numbing cream from the pharmacy. I figured if I numbed the area first and I knew it wouldn't hurt that the anxiety would go away. Wow was I wrong! I put the cream on, left it for an hour as per the instructions and got my Rebismart out and ready to go. For a half hour I kept re-adjusting my position, moving my arm, all while my poor boyfriend was holding the Rebismart against my arm. Once again, my only dialogue was "Don't hit the button, don't hit the button!" Finally I decided that my bed would be a better place, so I crawled in, wrapped myself in comfy blankets and put my head on the pillow. I finally let him press the button. I barely felt the needle at all, but the medication stung!!! It stung for a good minute or so after it was done. 13 seconds is A LOT longer than 10 seconds - I don't care what anyone says.

At least it's done and I don't have to worry about it until Monday. At least I know the needle itself won't hurt at much with the cream. I think I can deal with the stinging. I'm hoping that I can suck it up enough to do it again!!

It's only been an hour. I feel relatively normal, but have a little bit of a headache. I can't decide if it is caused by the huge amount of anxiety I had all day, or the medication. Chances are it's a little bit of column A a little bit of Column B.

One thing I noticed was how obnoxious the beeping is on the machine. I think the beeping caused some of the anxiety once I was ready to do the injection. I shut the sound off before I put it away for the night, so next time I won't have the constant BEEEEP BEEEEEP BEEEEEP. Hopefully that helps too. I will keep trying new things to help with my comfort level!

That's all I have for now. This pin cushion is on her way to bed zzZZzzZZzz

~Sarah

Injections - I'd like a divorce. Immediately.

2011-02-10T20:13:00.000-08:00

Yesterday sucked, again. In regards to my injection anyways. My first injection was fine. My second injection was also fine. Injections 3, 4, 5, and now 6 have all sucked!

Injection days are filled with anxiety - and it's so stupid. I know it doesn't hurt THAT bad.. but the whole process just sucks. I can go get a blood test and I'm fine, flu shots - sure why not. I'm covered in tattoos which were done by.... you guessed it... NEEDLES! One even took over 6 hours! 6 hours of needles constantly going in and out of my skin and I was fine. In my younger days I have had my tongue pierced twice AND my septum pierced. But these stupid little needles are making me on edge! It doesn't help that every time I have a shower, or change my clothes, these big red splotches are staring at me.

I had a great night last night. I went to a cool restaurant to watch the Canucks game with my friend and my boyfriend. All was great, until I got home and had to whip out the Rebismart. My boyfriend was going to do the injection on my arm. This resulted in him holding the Rebismart against my arm and me going "Don't hit the button! Don't hit the button!" for about 10 minutes until I finally gave up and decided to do my leg, AGAIN. I was so worked up by this time that I couldn't even push the button by myself on my leg, and he had to do it for me.

I have a prescription for Ativan that my neurologist prescribed to me for my MRI appointments. Yet another totally illogical fear, but more to come on my MRI experiences in a future post. I'm going to ask Multiple Support, or maybe my Neuro if I can take one of these on injection nights until everything becomes sort of routine and I'm used to it. I hate taking Ativan, but I HAVE to get over this some how. I'm so disappointed in myself right now. I understand that my fear is irrational, and I understand that this is for the greater good of my health, but I'm ready to saw screw it and throw the stupid injection business out the window. I know I can't do that though, I shall trek on. I'll pretend it's an adventure.

To top everything off, my lovely little Rebismart told me that my next dose (tomorrow night) goes up to 22mcg. I'm almost positive the nurse told me after 6 weeks the dose would go up. I've only done 2 weeks now, which is six injections. I guess she was confused. I'm still going to confirm with Multiple Support tomorrow - Just in case! I'm nervous that the dosage goes up in such high amounts. From 8mcg to 22mcg?! That's almost 3x as much! I'm concerned that I'll start feeling the side effects more. I guess we'll find out. I also forgot to adjust my settings so that the injection time was 13 seconds and as such, I still had a drop on my skin after the injection completed. So, on top of my unexplainable anxiety, and a higher dose, I now have to worry about 13 seconds. It doesn't seem like much, but I definitely noticed the difference between 8 seconds and 10 seconds.

Other than all the injection crap going on right now, things are pretty good. Work is much better, my energy levels are back to normal (even though I took an Alertec this morning for the firs time in awhile) and the icing on the cake - IT'S JERSDAY! No injection for me tonight, so I'm going to be a lump on the couch, eat a yummy supper and get my fist pumpin' on.

~Sarah

NOOOOOOO not another one!

2011-02-08T21:31:00.000-08:00

This illustration of a dalmatian with red spots sums up how I'm feeling right now.

I noticed a huge red spot on my leg where I did my injection on Friday. It's bigger than the one on my stomach, much redder, and uglier. Out of four injections, two have left nasty red circles. This is the worst!

I can already see a faint outline of one forming on my stomach from the injection last night. Am I going to get these EVERY TIME??? Ever since I changed the settings on my Rebismart, I'm getting the spots.

The nurse at Multiple Support said that these spots are actually a good thing, because it means I'm getting the correct Rebif dosage, but what happens when my dosage goes up in a few weeks? Am I going to get even bigger splotches?!?! I am not a happy camper right now.

~Sarah

Oh stomach, what will I do with you?!?

2011-02-07T22:27:00.000-08:00

My little red spot is still there. It doesn't hurt, it's not itchy. It's just there. I really wish it would hurry up and go away, but it doesn't look like it's going anywhere anytime soon.

Multiple Support called me this morning to see how my Rebismart was working after the adjustments. I let them know that there was still some drips on Friday, so we upped the injection time to 10 seconds, and the needle speed to fast.

My boyfriend was going to do my injection for me tonight. I decided that it wasn't a good idea, and I needed to do it myself! It took a few minutes (or more than a few minutes) to suck it up and press the button, but I did it! It felt like 10 seconds took FOREVER, but it wasn't as bad as I thought. It stung a little bit, but the injection itself only hurt for a split second. Once the needle was in, I was ok. My stomach is still my least favourite place to inject. BOOO! Oh well, it's done for another night. We'll revisit this irrational fear on Wednesday.

Unfortunately there was still a drip. I will need to adjust my Rebismart to a 13 second injection for next time. Hopefully this works. If the adjustments don't work, I'm not sure what else there is to adjust!!

Here's hoping that I can get a restful sleep on injection night for once!

~Sarah

What is that?!

2011-02-06T13:40:00.000-08:00

So during my morning shower, I noticed it. The dreaded red spot. I knew it was a possible side effect, but I hadn't seen any on my legs so I thought I would be spot free. Wrong - right there, to the left of my belly button is a red spot the size of a quarter. Just another reason for me to HATE injecting there. GRRRRR. I've heard it can take several weeks for the red spot to fade. GREAT! Who wouldn't want a big red spot? Not a fan.

Other than that, I'm doing fairly well! No flu like side effects, I've felt fine. The only thing I've really noticed is that I don't have a restful sleep on injection nights. I have to call Multiple Support about the drips again, so I'll ask if there's anything I can do to help me have a good sleep!!! Tossing and turning 3 nights a week does not make for a happy Sarah.

Tomorrow is injection night. My boyfriend is coming over, and I'll do the injection on the right side of my stomach. I will not be pressing the button though. I work myself up to the point where I can't bring myself to press the button, so my boyfriend will do it for me! I'll lay down, close my eyes, and he'll just do it without warning so I won't have time to freak out! Wednesday I will have to do the little spot on my back, or behind my arm. Not looking forward to those nights either.

My boyfriend bought us tickets to go zip lining in Whistler. Unfortunately, with all the mess and press surrounding the sled dog slaughter we haven't been able to book a time for us to go. Even though the zip line company is not associated with the sled dog company, they are being inundated with calls and we can't get through. So instead of going zip lining this weekend, we went to the gun range!

I am not a gun person. When my boyfriend said he wanted to go, I was hesitant but figured I'd give it a try. As soon as we got there and I heard how loud the shots were, I almost chickened out. Once I realized that I could pick a target that looked like a big fat zombie, I was good to go. It turned out to be a really fun day. I think I don't try a lot of new things because I'm nervous or scared. Yesterday showed me that I need to suck it up and stop being a princess - I might just have fun!!!!

That's all for now. I'm sure tomorrow will make for an interesting post. My boyfriend hasn't had to help me with my injections yet. He says he's not nervous, but I guess we'll find out!

~Sarah

Cluck Cluck Cluck

2011-02-04T21:16:00.000-08:00

Ok... so I chickened out.

I was ready to go, cleaned a little patch on my tummy, put the Rebismart on there... annnnnnnnnd nothin.

Promptly cleaned a little area on my left leg - done and done. Once again, a little drop. I'll have to call Multiple Support next week to fix up the settings!

I know I'm supposed to rotate my injection sites, but injecting into my stomach on Wednesday SUCKED. I couldn't bring myself to do it. I will need to work up to injecting in my stomach.

I feel pretty bad about chickening out, but I still injected somewhere which I was pretty proud of. I called my boyfriend, and he wasn't very impressed that I injected into my leg. A little bit of "hey babe that's ok, next time you'll be able to do it!" would have been nice, but whatever. Such is life.

I'm trying to figure out a game plan to get over this fear of pain!!! So far, I'm only comfortable injecting into my legs and I can't do that each time. I need to rotate the injection sites! My boyfriend will be here on Monday night for my next injection. It might work if I close my eyes and he presses the button.

I am now off for TWO DAYS! No work, no injections, no waking up early. I'm puppy sitting my friend's dog right now, and I'm surrounded by puppy love, a warm couch and blanket, and the peace of mind that I do not have to do ANYTHING tomorrow! WOOOOOHOOOOO!

I've had a killer headache since I came home. Just letting some time pass before I take the puppies outside, and then I'm crawling into my warn comfy bed. Injection days make for restless sleep. I haven't been able to distinguish if it's the Rebif or the anxiety of the injections that cause me to toss and turn all night.

THAT SUCKED!

2011-02-02T20:56:00.000-08:00

I woke up early today so that I could call Multiple Support and have them walk me through updating the settings on my Rebismart. Luckily my regular nurse answered, and he walked me through all the steps. He said to give it a week, and if I'm still getting drips to call back and he would adjust it some more.

So far, I've done one injection in my right leg, and one on my left. If I had my choice, I would just go from leg to leg, and never inject anywhere else. Unfortunately, I can't do that. I need to rotate between my legs, stomach, love handles, and back of my arms.

When the nurse was training me how to use the Rebismart, she told me that the stomach was the least painful place to inject. Well, she was wrong.

I had convinced myself that injecting into my stomach was going to hurt. Perhaps this was the problem. I laid on the couch with the Rebismart ready to go for FIVE MINUTES. My boyfriend was trying to talk me into it, and I ended out freaking out and sitting up. Not gonna happen. I started to feel the same way as I do when I walk into the MRI Machine room. Not a good feeling.

I took a breather, and we decided to put something distracting on television so I could watch that while I pushed the button. American Idol did the trick. I pressed the button, AND IT HURT!

I'm not talking about excruciating pain, but it still sucked none the less. It wasn't as horrible as I had made it up to be in my mind, but it wasn't fun. Since we adjusted the Rebismart to inject the medicine faster, I also had more of a stinging sensation. It's faded for the most part now and I feel ok.

I'm a little concerned about my injection on Friday. My boyfriend won't be here, so it will be my first time doing it totally by myself. I will do the other side of my stomach next time. My plan is to lay in bed, turn the lights out, and listen to my iPod. I figure wearing headphones will block the noise out which will help. The noise freaks me out a little bit.

I'm disappointed that it wasn't as easy as the last two, but they all can't be perfect. I guess I'll just have to get used to it!

~Sarah

Drip Drip Drip Drip

2011-02-01T19:04:00.000-08:00

Today was relatively quiet. Definitely better than yesterday, but I still find myself watching the clock more and more. I'm considering putting a sticky note over the clock on my computer so that I'm not constantly staring at it.

I knew that something was strange when the Rebismart left some droplets on my leg. I called Multiple Support today to see what's up, and was told that the settings needed to be adjusted. Unfortunately I was at work, and didn't have the Rebismart with me so I have to call back tomorrow before I leave in the morning so they can walk me through the steps. I asked the nurse whether or not those droplets should have been injected, and they confirmed that there should be no droplets and any medicine on my leg after the injection should have been injected.

Great - no wonder I had no side effects! I wasn't getting the full dose!

My assumption is that the length of time the needle remains in my skin needs to be lengthened. Or maybe they can make the medicine come out faster? Either way, the needle comes out before all the medicine has been injected which leaves me not getting all the medicine I need. According to Multiple Support this is an easy fix! Whew! Tomorrow night is injection night, so hopefully it goes well.

I've decided to do the Monday, Wednesday and Friday injections. I was cautious when the nurse told me I could do it that way, and skip the weekends. I was originally told every three days. Multiple Support assured me it's actually three times a week, and it's fine to take the weekends off. That works for me!

That's all I got right now! Check back tomorrow for Injection #3!

~Sarah

Injection Round 2!!!

2011-01-31T21:03:00.000-08:00

I'm sorry I didn't post over the weekend. I had a quiet relaxing weekend, and was Rebif Side Effect free!

I was cleaning my apartment this weekend, and realized that I had my Rebismart supplies ALL over. I bought a large container, and some smaller ones to organize all my supplies and keep all my healthcare/Rebif docs/literature all in one place. I found this very helpful!! I also supplied the box with Lysol wipes to clean the table before and after my injection, some hand sanitizer, and some Kleenex in case I turn into a big baby.

It was time for my Rebif injection tonight. I was anxious all day! Even though I didn't experience any pain or discomfort last time, I was still nervous. I was even more nervous that I would remember everything that the nurse taught me. I cleaned the area, inserted the needle into my Rebismart (this was surprisingly easier than last time!) and was ready to go. This time, it stung! My boyfriend noticed that I was pressing the Rebismart pretty hard against my skin and told me to ease up but I was pretty tense. Next time I will be more aware of the pressure and hopefully I won't experience the stinging as much.

All laid out and ready to go!

If you look REALLY closely, you can see the tiny needle that I'm so scared of!

Not the greatest picture, but that's the bottom of my Rebismart. The needle goes inside the big hole. The small oval shaped black spot in the bottom right hand corner is the sensor. This sensor detects skin, and the Rebismart will only inject if the sensor is placed flat against your skin.

I'm a little bit concerned about the little droplets of medicine that I see on my leg, and on the end of the needle after I'm done the injection. I'm not sure if this is normal, or if that medicine should have been injected. My boyfriend is convinced this is normal, however I couldn't find anything in the FAQ about it. I'll call the Multiple Support Program tomorrow for some advice. I'm sure they will be great and helpful as usual!

On an unrelated, but sad note, a news story came out today that broke my heart. It was just revealed that a sled dog company in Whistler, BC called Outdoor Adventures Whistler was responsible for the brutal massacre of 100 beautiful sled dogs. After the Olympics, business dropped. The company said they attempted to find homes but were unsuccessful, and a veterinarian refused to assist them with the humane euthanization of dogs. They ordered one of their employees to kill 100 of the pack. The employee brutally shot and wounded them, and even used a knife to kill some of them. This unspeakable act only broke the news when it was discovered that he filled a claim with the Worker's Compensation Board for some sort of traumatic stress disorder. Google news "Whistler Dog Sled" for more information, but be warned the graphic details are not for the weak of heart.

This story made me sick to my stomach. It's stories like this that made me sad. I came home and hugged by dog Toby. People are sick.

To end on a happy subject, Monday is over! Thank goodness it's (almost) Tuesday?? Keep checking back as I am currently doing some research to do a big post on CCVSI as well as the Anti Inflammation diet. It should be an interesting read. I should also mention that each time one of the advertisements on my blog gets clicked, I make a tiny bit of money. The majority of the advertisements that appear are selected by Google, but seem to relate fairly well to my blog and Multiple Sclerosis. If you see an advertisement that looks interesting to you, please don't hesitate to check it out. By doing so, you're helping me, and possibly finding something else that is of interest to you.

~Sarah

Hello Rebismart, you're my new friend!

2011-01-28T21:57:00.000-08:00

My day did not start out in the best of ways. I woke up this morning and thought to myself "sweet I woke up before the alarm." I rolled over, grabbed my phone and the screen was black. My battery had died in the middle of the night and as such, my alarm never went off. I missed my train to work, and had to take the bus. The bus takes an hour, makes me motion sick, and is full of stinky people. I was not impressed. Not a great way to start the morning.

My nurse came this evening and was very friendly and extremely thorough. She wasn't down with the idea of my video taping the injection, but I assured her that she wouldn't be on the tape. She was awesome! I took two Advil to help with any possible side effects and she went through all the literature that came with my RebiSmart. She taught me how to do everything from putting replacing the batteries to loading the cartridge of Rebif in. I had a hard time getting the needle into the machine. I have very shaky hands so this could prove to be challenging for me. She helped me out and we got the needle inserted. With practice I should get better at inserting the needle. We went through every setting on the machine, and then came the time to inject myself.

I chose my leg because I thought that would be the least painful. The nurse told me the stomach was actually the best place to start, but the thought of injecting myself in the stomach freaked me out. I used one of the alcohol pads to clean my injection site, and then came the big moment. I pressed the Rebismart onto my skin, grimaced and waited for the light to turn green. Once it turned green I pressed the button - and nothing happened. Or so I thought. I didn't even feel the needle pass through my skin. It injected the medicine, and it beeped to let me know it was done! It was awesome, I didn't feel a thing.

The nurse told me they are required to stay for an hour after the injection. I was feeling fine, so I was permitted to sign some sort of release form which said I was aware of any risks associated with the medication. It's been 2 hours since my injection and I feel fine. I'm tired, but I'm attributing that to working all day!

As promised, here is the video! I apologize in advance for my appearance.... it's been a stressful week!!

I couldn't figure out how to make the video appear bigger, so if you want to see a larger version you can go to http://www.youtube.com/watch?v=Zz-wg9UBGaE

Today turned out to be a pretty good day. For those of you injecting with the RebiSmart for the first time, take it from me - It doesn't hurt!!!!

~Sarah