Injection Round 2!!!

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!

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

It's JERSDAY!

Most of you are going to think less of me, but I can't help it.  My name is Sarah, and I am addicted to crappy television.  First, let me make this clear.  I'm not laughing WITH these people, I'm laughing at them.  Thursdays make me happy because I can watch Jersey Shore, and Friday mornings at work we talk about how awesome it was.  I also have a thing for Teen Mom... I know.. just as bad.  I can't help it!  Do they have support groups for people like me?

Today dragged on, but I'm still feeling better.  As tomorrow draws closer, I'm getting more anxious about starting my Rebif Injections.  I'm not sure what I'm more worried about - the side effects, or the psychological effect.

Let's break it down:

Side Effects (as copied directly from http://ms.about.com/od/treatments/a/rebif.htm):

Flu-Like Symptoms: The most important side effect is the flu-like symptoms, which are experienced by about 69% of patients. These include: fever, chills, sweating, muscle aches and fatigue (but not nausea or stomach upset), and they last for 8 or more hours. This side effect is usually the worst after the first injection and progressively lessens with each injection, so that most people do experience it (or it is tolerable) after six months – it can also be reduced by starting with a low dose and increasing to a full dose gradually (over several weeks). Taking ibuprofen or acetaminophen a couple hours before and after can help with some of these side effects.

Red Spots: Red spots usually occur at the site of injections (in 71% of patients), which may last several weeks. These can break down into sores (injection-site necrosis) in 5% of all cases.

Liver Damage: Hepatic injury including elevated serum hepatic enzyme levels and hepatitis has been reported. Regular monitoring is required to prevent such damage from occurring or progressing. If you notice that you begin bruising easily or that your skin or the whites of your eyes begins to look yellow, go see your doctor immediately.

Blood Counts: Rebif can cause a decrease in the numbers of red and white blood cells, as well as a reduction in the number of platelets in the blood.

Depression: Rebif should be used with caution in patients with depression.

Allergic Reactions: Although rare, some people have experienced an allergic reaction to Rebif (which can happen after the first dose or after several doses), which has caused difficulty breathing and loss of consciousness.

Thyroid Abnormalities: Rebif should be used with caution in people with thyroid dysfunction, who should be monitored for thyroid function every six months while on Rebif.

And Psychological Effects:

The constant reminder that I actually have MS: Typically I can forget about it unless I'm having a flare up.  I feel relatively fine except for the fatigue and occasional grumpiness.  Having to inject myself every three days is going to remind me, even when I feel fine, that I do have an incurable disease.

In order for me to be able to do this, I need to remember that this will keep me healthier.  I'm sure once I get into a routine and things get back to normal it won't be nearly as bad.  Until that time, I guess we'll see how I feel.

The nurse comes tomorrow evening when I'm done work.  As I've mentioned in the past, I plan on recording my first injection and posting it so everybody can experience it with me!  Lucky you!  I'm not sure how the nurse will feel about this.  If she's not down with it, I'll have to make sure my boyfriend doesn't have her face in the recording.

Tonight however will be full of "juiced up gorillas", "guidettes", and fist pumpin' from the couch!

~Sarah

Today wasn't so bad!

Things are getting better.  My energy level is getting back to normal.  I'm glad to be at the tail end of the low energy/feeling like crap phase.  Work went by incredibly fast.  When things are busy, the clock doesn't move nearly as slow!

My faith in humanity was lost today - ok not really, but sorta.  The company I work for made a slight change, and the customers FLIPPED OUT.  The customers needed to make a small change to their accounts, and it really couldn't have been made any easier.  People could NOT figure it out.  After dealing with these people ALL day, I'm surprised they even remember to breathe, or eat, or function in a normal fashion.  Tomorrow will be no better, so I'm hoping the day goes fast again.

The home care nurse called me today.  She's coming Friday evening now instead of Saturday morning and I'm much more comfortable with that.  I'm just anxious to learn what I'm doing so that I don't have to depend on other people to teach me how to do it!

As you are all aware, I'm pretty new to this blogging thing.  I've done a little bit of research on how to obtain more readers/traffic.  If any more experienced bloggers have any tips and tricks, I'd love to hear them!

~Sarah

Another day another dollar... spent!

Today was much better than yesterday.  I had a good sleep last night, even though it was nearly impossible to drag myself out of my warm bed!  Work went by relatively quickly and drama everywhere was kept to a minimum for the most part!  I'm hoping tomorrow goes by faster than today, but I have my doubts!

Alison, a nurse from Multiple Support called me regarding getting some additional funding to help with my medication.  I let her know that I figured everything out with Fair Pharmacare so I was ok now, but that I was disappointed the nurse could only come Saturday morning.  When I told her I wanted to take my medication at night, and not in the morning she agreed with my reasonings but told me because the dose is so low with the first injection that I will not experience much discomfort.  Regardless, she told me that my comfort with the meeting was important and she was going to call the nursing company and try to arrange an evening appointment on my behalf.  AWESOME!

The only downturn to my day was getting the mail and seeing all the bills.  BOO to bills!  I'm worried I might have to get a part time job to stay on top of everything, and with my energy levels as of late I'm having enough trouble with my full time 9-5!

I'm very surprised and happy that my blog has received such positive feedback!  I've received hits from Sweden, UK, Ireland, Canada and the US!  I really hope that my blog helps somebody all the way, and I can always be reached through comments if anybody wants to talk!

My boyfriend had a tough day to work so he's on his way here with some super unhealthy but delicious Wendy's and brain melting television.  I think it's just what the doctor ordered!

~Sarah

Sick and tired of being tired?! What?

 

I'm feeling stressed about a lot of things right now.  I think the stress is magnified by the fact I've been so tired lately.  Seemingly little things annoy the hell out of me.  People need to realize that it may not seem like a big deal to them, but it's a huge deal to me.  I feel that I get dismissed a lot, and my feelings aren't taken seriously.  I feel like my life consists of sleep, work, try to stay awake after work, then sleep. I don't want people to walk on eggshells around me, but a little understanding would go along way.  There's a lot of things weighing on my mind these days.  I need to make some changes to turn things around!

The fatigue thing is really getting to me.  Unless you've ever experienced real fatigue, there is no way that you can begin to understand how much it sucks.  You literally have NO energy.  Getting up to get a drink from the fridge, or walking to the bathroom is exhausting.  A few times last week I didn't even have enough energy to stand up and have a shower so I sat in the bathtub and washed my hair with a cup.  I seem to go through phases, with this past week or so being pretty bad.

My neurologist prescribed a drug to me called Alertec.  Basically, I can take one in the morning, and one in the afternoon and it helps with the lack of energy.  Sometimes it works, sometimes it doesn't.  I don't want to take it every day, so I reserve it for days when I really need it.  I have a feeling that tomorrow will be an Alertec day.

Enough with the pity party!!!!  Speaking of parties, the nurse called and booked my Rebismart training session for Saturday morning.  I'm a little disappointed because as I mentioned in a previous post, everybody, including my neurologist and clinic nurse told me to take the injections at night before bed.  The nurse couldn't come this week in the evenings, and Saturday morning was the only time she could come.  I'm hoping that I don't have any sort of reaction because I really don't want to waste my weekend laying around.  She told me I should be taking it in the morning for the first six weeks.  I will call the Multiple Support program tomorrow and see what they have to say.  Taking it in the morning means I'd have to do it before work, which means I could feel like garbage at work.  I already don't want to be there, I don't need to feel sick at the same time.

I guess I'll have to suck it up and see what happens.  It can't be that bad.  Right?

~Sarah

Oh hello super expensive medicine!

My neurologist at UBC told me last year that I should consider going on a disease modifying therapy.  Fine!  I can take a pill every day, no problem!  Not quite - it's not a pill, and I need to inject myself with it every 3 days.

The medication I will be taking is called Rebif.   I have a basic understanding of how it works, but to explain it would go over my head.  It's not a cure, but the understanding is that it will decrease the amount and severity of attacks I have. 

I let this register with me for quite awhile.  The doctor told me to hold off until January because it's easier to deal with the insurance companies and I wouldn't need to pay a deductible for 2010 and then 2011.  So, here comes January.  I get everything in gear, get the prescription, order the machine (more to come in this post) and mosey on over to the pharmacy to drop it off.

Then came the fun part.  I was told this medication was around $27k a year.  I was also told I would be covered by Fair Pharmacare and had applied and been accepted into that program previously.  I get a call from the pharmacist telling me they were waiting to special order the medication because they wanted to confirm I was aware of the high cost - $2040.00.  That's right!  $2040.00 for ONE MONTH worth of medication.  This was followed by over 4 hours of phone calls to Fair Pharmacare, and my insurance through work etc.  Nobody could tell me anything, I had no idea how much I would have to pay.  Finally, I picked up the medication on Friday and it cost me $700.00.  Fair Pharmacare finally explained to me that I have to pay up to a certain amount before I'm covered 100%.  That's fine, however, what do people do that can't afford it?  Do they just go without?  THIS IS CANADA!  If I didn't have supportive parents who have the luxury of helping me out, I would not have been able to get this medication.

Regardless, it's done now, and if you are curious as to what $2040.00 worth of medication looks like, be curious no more:

While dealing with insurance companies was stressful, the drug company has impressed me to no end.  The drug company runs (or is at least affiliated with) this program called Multiple Support.  I received a call from Multiple Support to order my Rebismart Injector device, and for the first time actually spoke to someone who knew what they were talking about.  I was put in touch with a person who put me through to the insurance company on a three way call and they did all the talking.  They even emailed insurance for me, and CC'd me on everything so that I'm kept in the loop.

When I received my Rebismart I was even more impressed.  I didn't JUST get the machine.  I got a carrying case, a cooler bag, cooler packs, a huge supply of alcohol swabs and needles, and sharps container.  Anytime I need anything, I just call and they send it the next day for FREE.  They also sent me a TON of literature so I know what to expect, and they are sending a nurse to my house for a training session so I know what I'm doing.  Anytime I need assistance in the future, I can call 24 hours a day and speak with a nurse.  They will also send the nurse to my house anytime I feel I need more assistance.  Perhaps this is why the medication is so expensive, but when you look at all the support you receive it is worth it in the end.  Here is everything I got in my package:

The nurse will come at some point this week and will train me how to use the machine.  I'm not worried as much about the needle part as I am about the side effects.  The most common side effect is flu like symptoms that last for 6 hours after the injection.  They recommend that you take an Advil or Tyelenol and do the injection before you go to bed.  This allows you to sleep through the crappy feelings.  Eventually your body gets used to the medication and the side effects wear off.  We'll see what happens.  I plan on video taping my first injection with the nurse so I can share it with everybody.

That's all for now!

~Sarah

This is gonna be a long one....!

I figured I should explain how my situation came to be.  This is going to be long, and I'm not going back to edit.  I apologize if there are any typos hah

Two and a half years ago I was working in the online gaming industry.  I worked the night shift and I supervised a team of people that reviewed online poker cashouts for fraud.  I became addicted to the money I made working overtime, and working 65 hours a week was nothing out of the ordinary.  In addition to all this work, I didn't get a ton of sleep, I smoked, wasn't eating healthy foods, and rarely saw the light of day.

My left eye started hurting one day.  It felt like there was pressure behind my eye, and hurt to move it.  I attributed it to working too much and not getting enough exercise.  In an attempt to be more active, I joined the softball team at work.   In the middle of a game, I noticed my vision getting fuzzy.  I brushed it off, and told myself it would get better and I needed rest.

I was in the grocery store with my Aunt, and reached up to the top shelf to grab something when all of a sudden my vision in that eye went almost totally white.  I guess I was still in denial so I didn't say anything and I went to work that night.  The next day, it hadn't gotten any better.  It was as if my eye was a television, and someone turned up the contrast.  I couldn't read anything unless I closed my left eye.  I told my parents, and my mom told me to get to the ER ASAP so off I went.

I was rushed in to see the doctor immediately.  My suspicion is that the triage department thought I had a stroke.  How else does a relatively healthy (to be debated) 25 year old go blind?  The doctor looked in my eye, and told me there was nothing wrong that he could see.  He told me to get rest and sent me home.  Great, thanks doctor!  Big help!

I wasn't happy with the answer I got at the ER, so I booked an appointment with the eye doctor.  This resulted in an immediate referral to the Ophthalmologist, which resulted in being sent to the St. Paul's Hospital Eye Clinic.

Everybody at the eye clinic was very nice.  They diagnosed me with a clear case of Optic Neuritis.  This wasn't news to me as I had been Googling my symptoms for the past two weeks.  Optic Neuritis is esentially swelling of the optic nerve which prevents the nerves from telling your brain what you are seeing.  Hearing my diagnosis was pretty scary.  During my research, I learned that this is usually the first sign of Multiple Sclerosis.  The Neuro-Opthamologist at the clinic told me that this isn't always caused by MS, and not to panic.  They gave me a prescription, and I felt a lot better as I went home.


I was prescribed a SUPER-HIGH dose of prednisone.  Prednisone reduces the welling of the optic nerve and in turn, allows it to heal so that your vision returns.  The clinic did not tell me ANYTHING about the side effects, and I was expecting an easy time.  WRONG!  I had to take 20 pills at a time.  YES, 20!  I was to do this once a day for 3 days.  I felt fine.  The day after I finished the dosage I went to work and felt great.  Within an hour of being there, I started to hear voices.  I put my headphones in, and the voices were drowning out my music.  I realized that I was hearing things, and I walked out and drove home.  I went to bed and had nightmares all night about people killing my dog and woke up with a massive migraine.  I felt horrible.  I drove myself to my family doctor, who checked my blood pressure and sent me to the ER.

My body had gone into horrible withdrawals.  Further research now indicates that people should be tapered down, not totally cut off of this medication.  Why they didn't taper me down, I will never know.  I was in the hospital on IV all day having horrible anxiety attacks.  I'm very thankful that my Aunt was able to look after me that day.  The next day I felt better, and within a month my vision had come back.  I was happy, and thought I was done with it.

Shortly after everything happened, I was sent for an MRI.  My MRI came back normal with nothing of any interest on it. 

I continued working and life went back to normal.  August rolled around, and I noticed something wrong with my right eye.  The pressure came back and the pain with movement.  I knew immediately that it was happening again.  I called the eye clinic, and they sent me to the MS Clinic at Burnaby General Hospital.   I had dealt with the neurologist there before, and found it extremely hard to communicate with her.  She looked at my chart, looked at my eye, and the only thing she said to me was "You have MS", she then walked out of the room.  I was by myself, and obviously started crying.  My boyfriend was in the waiting room, so I asked the nurse to bring him in.  He comforted me, and the nurse came in to talk to me about treatment.  She explained that one episode of Optic Neuritis doesn't necessarily mean anything, but two episodes make an easy MS diagnosis.

Because of my previous reaction to the steroids, it was decided that I would be admitted for three days of Solu Medrol.  Solu Medrol is also a steroid, and is delivered through an IV.  I had no reaction this time, and my right eye healed extremely fast.


One of my sister's old roommates had also been diagnosed with MS.  I was put in touch with him, and he told me about the UBC MS Clinic.  It sounded much better than Burnaby, so I went to my family doctor and he sent off a referral.  During my first appointment at UBC, I knew I made the right decision by switching doctors.  I learned all about the disease, learned that they CANNOT diagnose you with MS solely based on having two episodes of optic neuritis, and was promptly scheduled for another MRI.  My MRI came back normal again and I was scheduled for a Spinal Tap.  There are proteins in spinal fluid which can be used to detect Multiple Sclerosis.

Everybody told me that the Spinal Tap would be painless.  Well, either those people lied, or I'm just a freak.  Either way, it was the most painful invasive thing I've ever had done to me.  She used two doses of freezing, and I still felt the needle going into my spinal column.  My boyfriend was there, and I leaned over on them as they were collecting the fluid.  I couldn't stop crying, and I drooled everywhere.  Needless to say, no more spinal taps for me.

The results came back earlier this year and the diagnosis was Multiple Sclerosis.  No huge surprise, but there's always a little glimmer of hope that the results would have come back differently.  My doctor didn't recommend any course of treatment yet because my symptoms were limited to the previous two flare ups, and my MRI was still clean.

Everything was fine again until August 2010.  I felt great, and noticed the vision in my left eye was fading again.  I had no pain this time, but my vision faded out within a couple of days.  I was admitted back into the hospital for three days of Solu Medrol.  My vision came back within a couple of weeks.

Because of my third flare up in two years, my doctor recommended I start an injectable medicine called Rebif.  More to follow in regards to that.

I hope this wasn't too boring.  It feels good to get the whole story out.

~Sarah

Welcome to my blog!!!

Hello!  My name is Sarah, I'm 28 years old and I live in Vancouver, British Columbia!

The last two years have been filled with hospitals, emergency rooms, MRIs, neurologist visits, and crazy medications.  I think I'm dealing with it pretty well when everything is considered!

While researching MS online, I attempted to find some blogs by people my age who were in a similar situation and was unable to locate anything of real relevance.  I couldn't relate to the authors, and decided that this would be a great opportunity to make something good out of a really crappy situation.

This is my first blog, so bear with me!  I intend to fill this with my experiences, funny things that make me smile, news and information on Multiple Sclerosis.  The last thing I want is a depressing journal, so I will try to keep it light hearted.  It certainly will be about more than just MS.  I will try to update as often as possible.

Thanks for taking the time to check this out!

~Sarah