A Vacation Within a Vacation

The second annual Winnipeg-Ontario family vacay in Wisconsin starts this week-end. There will be lots of games played, lots of towel drying after swimming, numerous bottles of sunscreen applied, and great food. What there won't be is Rebif - no injections for me.

I have decided to take another Rebif Holiday. These are maybe becoming a little too frequent, but until I see my neuro in October, this is how I plan to handle it. This time, I'm taking a full 2 weeks off, not just the one week that I have taken lately. This means that my sites will have a 3 week break from the drug. My sites are ugly and the pain during injection is scary...okay, the pain isn't scary, my yelling and screaming is scary. My arm sites aren't just ugly, they are sore. If it was just ugliness, I could handle it.

I see no point in tainting this vacation with my troubles. It's a 10 hour for Jason and I and a 10 hour drive for those coming from Kitchener. So there will be no PID sickness and no pausing in the middle of a card game so that I can do my shot. The only pausing will be to refill the drinks and the chip bowl!

I tested out my water hat earlier this summer - it's ready to go! Now, I will pack.

Break Required

Is this what they mean when they say "unable to tolerate":

The above picture was taken exactly 2 weeks following the injection in this arm. Knowing that my arms are the least painful to inject, this wasn't a terrible injection. But the aftermath is shocking! There was no blood spill, not even a trickle. Just a little pea sized lump...how did that get there? First time for everything. This bruise in large, and it isn't getting better. I'm now at 3 weeks, and it still looks like this.

Prior to the above injection, I had taken an "injection vacation": one week of giving my skin a break, injection free. Too many red spots, faded purple blotches, and sore areas.

Last night, I checked my right arm in the mirror, looking for a spot to inject, only to discover the entire area was taken up by a red and purple tinge. Outer thighs, same thing. Back hips, same thing. So I'm on another injection vacation.

 A "normal" red mark

So I ask, is this what they mean by not tolerating the medication? Are there long term consequences to these injection reactions? They only seem to be getting worse: I have been on Rebif for 3 years.

It's the Most Expensive Time of the Year...

...and the drug company put up the price!

I know, there is no collusion between the insurance company, the drug company, or the even the pharmacy. But still...the price increase with my Rebif corresponds to the time of year that I have to pay out of pocket for my drugs.

I knew that I would have to pay some money, but the amount I was asked to pay caused me to do a double take at the receipt. The retail price of the Rebif has gone up from $1921.92 to $2025.71 per month - in just one month. I am blessed to have insurance that helps with this amount, and next month I shouldn't have to pay anything - but what about the people who don't have insurance, or who don't live in a Province that covers Rebif?

Rebif Woes

Last night, I skipped my Rebif injection. I didn't forget about it, and I wasn't intentionally giving my skin a break (although it is a benefit of skipping, and probably needed). No, I am protecting my liver. sigh.

The doctor has yet to review my most recent blood work, but the MS Clinic nurse was compelled to phone me and ask a few questions about my lifestyle when she discovered that my AST (one of the two measured liver enzymes) is the highest it has ever been. The troubling part for me is that it is the highest, despite me weighing more than ten pounds less than I did at my previous high. Outside forces that could change the enzymes are alcohol consumption and increased acetaminophen intake - neither of which apply to me. I tried to blame the increase on my less-than-stellar eating habits.

*the other measured liver enzyme is the ALT, which if I remember correctly, was actually the higher (and disconcerting) of the two numbers

So Dr. E. will review my blood work today: the options, as discussed by myself and the nurse, are to either terminate the Rebif therapy or cut back to 22mcg (which I can't do without a new prescription). I'm pretty sure that following my latst MRI, I expressed here in my blog that I feel the Rebif is working for me - terminating the therapy is the last thing that I want to do.

Emily

Results, Prompting Questions

I'm sorry to have kept you in suspense for so long! I just realized that I haven't shared my MRI results with you. I have been celebrating since Monday afternoon...all by myself!

Let's skip the small talk and get down to business...

First of all, the Winnipeg Regional Health Authority has streamlined patient records. This means that when I have a procedure at a different hospital than normal, the new hospital can access the old records. This means two things to me: I can't get a new diagnosis very easily; and it is helpful to see if things have changed on my MRI's. I guess I will go with this being a positive development.

So...I still have MS...I didn't receive a "this isn't MS" report from the radiologist. Rather I received a "everything in my brain is just as it was 3 years ago, except that the lesion in my frontal lobe is smaller, and there is a new lesion in the pons", report.

That's okay. And if I understood this disease, or had a neuro that I could speak with, I'm sure that I would say it's great. In the moment of hearing the report, Jason and I were happy. My doctor is happy.

But I'm still worried. This means that the lesion assault on my brain is still there. Oodles of white marks, visible in a black and white photo of my brain. What are "they" doing? What have "they" been doing for the past 4 years? Are they just floating...waiting to all pounce and be reflected in my outward self all at the same time? Slowly nibbling away my myelin?

Well...it will be what it will be...right? The course can't be altered.

But I do think that I will stay on a DMD. I'm going to convince myself that it has been the Copaxone and the Rebif that have kept more of the fuzzy white spots away.

Emily

P.S. Jason, upon review of this post, has the answer to what the "white spots" have been doing... "They're pissing you off".

Side Effect, Darn It

I may have jumped the gun when I said that everything was okay regarding the Rebif 44 dosage, and any side effects. Not that things aren't "okay", I'm just a bit more uncomfortable on P.I.D. days. It took all of last week's injections, and a jump out of the state of denial* I was in to discover the new side effect.

*denial being that there had been no change when doubling the dosage.

On Monday's, Wednesday's and Friday's (P.I.D. days) I feel like I'm going to throw up AND I have a crushing headache.

I have already been dealing with nausea, but now my body is experiencing the physiological symptoms of vomiting: my saliva gets hot, my cheeks tingle, my stomach churns, and I start a trek to the toilet. For nothing.

Emily

Regarding injecting my thigh - I was surprised to learn of the "inject where the seam of your pants would lie". And - if you have "saddle bags", all the better! Alas, this isn't working for me. But last night was an arm - and it was GREAT! Quick, painless...

negatives

Hot hot hot. It's 15 degrees (and overcast) today, and I am HOT. My internal thermostat is whacked. Broken. Misfiring. Screwing with my happiness and comfort.

My face is covered in beads of perspiration. I radiate heat.

And to top it off, I think that the 44mcg of Rebif is creating more/greater nausea on my P.I.D days. And more headaches.

And my left leg is uncomfortable: it feels like a stretched elastic - and every once in awhile (okay, every five minutes) it releases, somewhere in my leg.

Did I mention that I'm still dealing with a rough run of fatigue?

These are tough times.

Last week, and I think even for a couple of days the week before, I napped every day. But I still pushed through - trying to be "productive" everyday. So far, since Sunday, I have done pretty much NOTHING. I don't even have the desire to be "productive".

For a change, I'm not fighting with myself to "do" something.

Emily

Oh yes, and here is a Rebismart update. I can no longer handle the pain associated with injecting the Rebif in my thigh. I've tried an icepack prior to the injection, and maybe in a couple of weeks I'll try heat. But for now, I have dropped my thighs. I'm in no frame of mind or physical space to put myself through any more pain than necessary.

22 to 44

The switch from 22 micrograms of Rebif to 44 micrograms of Rebif was...uneventful. woohoo! If anything, the burning sensation during the injection has continued to improve/lessen. And, my P.I.D. experience was in the normal to average range!

Nothing new to report or experience on the injection front!

Injection number 2 at 44 coming up tomorrow!

Emily

Another Video

I made a video of last night's injection with the Rebismart. The audio and video aren't perfectly in sync with one another, but it will do. Also, I show how I inject into my arm.




Emily

Independent Injector

I am an independent injector! On Thursday night, I injected my right bum cheek - all by myself. I was so alone - Jason wasn't even home. The cats were sleeping. The people in the television were ignoring me.

I did have to psych myself up. I straddled a chair, and made sure that I could reach the spot - I made sure that Rebi would beep, which she does to tell me that she is ready to go. I also had to make sure that I could hold Rebi steady for the entire time (11 seconds post injection, while the needle is still in my skin, plus the time the evil solution comes down the needle...maybe 5 seconds).

This means that I am able to do all of my injections, comfortably, by myself. Arms, thighs, bum and stomach. I don't need to have "Otto" and "Manuel" on my staff anymore.

*Otto and Manuel are Jason's inner injection-personalities, designed to make injecting easier for both him and I. Otto uses the auoto-injector and Manuel uses the needle manually.

Now all I need is the larger purse that I desire, so that I can carry Rebi anywhere.

Emily

What Was With That Injection?

I'll have to talk more about my smart injections next week. Why? Because I need at least one more under my belt to remember what it was like.

I don't think that the process was quiet, and that may be what threw me off the most with the first one. The association between the discomfort (a strange kind of pain) in the injection area, that is obviously related to the mechanical noise being held in my hand, resting against my thigh.

And, I hit a vascular area.

Does that sound complicated?

That's how I feel.

With the Rebismart, you can adjust the speed in which the needle pierces your skin, the depth in which it sits in your tissue, the speed of the medication coming down the needle, and how long the needle sits in your tissue after the medication has drained. There is a lot to customize.

On a different note...

I had my first appointment with my new GP doctor this week...and I like her. She has ordered an MRI of my brain! She couldn't believe that I haven't had one since April 2007. She orders her patients, who live with MS, one MRI per year. She believes that it is important to know what is going on, what's coming.

Have I found a partner in looking after my health?

Emily

Rebi, CCSVI and My Cart

So much on my mind these days!

First of all, I didn't use Rebi last night. I'm taking my moms advice, and waiting for the nurse to come and instruct me. I sure hope that she calls us soon!

Oh yes, and did I mention that the four cartridges of Rebif (12 doses) cost less than 12 pre-filled syringes? Jason and I thought for sure that it would cost more - being *NEW*.

I didn't really have time to enjoy Rebi last night anyway. I have had "CCSVI" (Chronic Cerebral Spinal Venus Insufficiency) on the brain: in particular, doppler and MRV (like an MRI but of the veins) testing. There is a surgery/medical clinic in Vancouver, that is offering MS patients the recommended protocol for diagnosing CCSVI. I shouldn't say "offering" as you do have to pay for the tests. And if you do have narrowing of the veins, the clinic does not offer the "Liberation" treatment (opening the veins through angioplasty or stents). The "Liberation" treatment is not available in Canada.

*can you see me rolling my eyes?*

But should I have the tests, and discover stenosis...I could go to New York, or Poland...or even India to have my veins opened up!

*insert false excitement here*

Had I written this blog yesterday, I would have told you how the idea of the Liberation treatment scares me. At the time, I was under the impression that the clinic in Vancouver offered a complete package: testing and repair if necessary. I knew nothing of cost or time-line, but I was mulling over the idea of adding my name to the appointment list. I envisioned a waiting list of over a year, and a cost upwards of $10 000.

I also envisioned myself with narrowed veins. From there, I had the "Liberation" surgery... I felt...well, liberated...a changed person...free of the bricks weighing down my limbs...out of the fog that smothers my brain...energized. And so I envisioned myself returning to work...doing everything that I miss, and filling in the missing pieces of my current life.

And then...seven months later...crashing. Falling back on to the couch...the fog rolls in, the bricks encase my legs...and I no longer have disability insurance. It's a nightmare.

My current apple cart - no matter how good the wheels, at least rolls along. A bit wonky, but it works. Why would I want to upset it?

Emily

update

I have completed two weeks of Rebif, and there is something that I need to work on: don't tense up just before the needle breaks through my skin.

The injections themselves sting, but I'm not having any site reactions. I'm experiencing some mild P.I.D. days, and definitely over-night aches.

But enough about that.

Ladyfingers and Dude are visiting!

We're having a great visit - lots of games, good food, lazy mornings, watching sports on television, spa day, and hugs!

Upcoming stuff:

1. The selections have been made for Em's Slackers Spring fundraising drive! I can't wait to share them with you!

2. Rebismart - electronic injection device

3. Aquafit update

Emily

It's a Crazy Life

That did not go as planned...or hoped...or imagined. My first Rebif shot in over 9 months, is one for the books.

And what did we learn:

Jason has a bad habit of beating himself up.

Things can happen so fast.

I may remain calm, but not necessarily smart.

I think that we were too casual. Or I was too casual, and Jason was nervous. That's more like it. I try to be casual and relaxed when it comes to injections. If I'm not anxious, then Jason won't be anxious. I don't anticipate pain or discomfort, as I don't want him to feel as if he is responsible for any pain that I may experience.

I thought we had it in the bag.

I rolled up my sleeve, found a prime spot in my arm, and reviewed the steps of pinch, poke, release, plunge, remove.

When Jason missed the release, the needle popped out...or something like that. The drug was still mostly in the needle. Some dribbled on the floor, and on my arm.

If you read the beginning of this post, you know what happened next. Except for this part.

I blindly stuck the needle back in my arm and finished the task.

I don't care about what happened. I care about Jason's reaction to what happened.

I hope this is just a blip...

Emily

It's Almost Time

I finally got to the lab for my blood tests! And on the way there, I dropped off my Rebif prescription at the store.

This means that I will be back on my Rebif either tomorrow or Monday. Jason and I have opted for a Monday-Wednesday-Friday schedule for the injections. I'll be responsible for Wednesday needles, as Jason is "OUT" on that night.

I'm nervous. I hope that my body reacts the same to the "poison" as it did last time. I had minimal site reactions and very little of the typical "flu-like" symptoms overnight or the following day. I would love to discover that the Rebif helps my fatigue!

And Air Miles! I would love to pick up an immersible blender so that I can whip up some warm milk!

Hopefully my Pharmacare deductible is close to being filled for the year, and we won't have to put out too much money for prescriptions. It will be a couple of hundred dollars alone when I pick up this first month supply. This couldn't come at a worse time, financially, but is there ever a good time?

Will my stars ever be aligned?

Emily

take it as it comes

Spontaneity. It may just happen. The words given to a couple unable to conceive a baby using all means within their financial, emotional and physical power.

Spontaneity and just letting things happen is not how am I trying to live my life with MS.

So now what?

I'm feeling a bit useless and damaged. But don't worry - I got out of bed, I washed the dishes in the sink, and I'm writing this blog. I just need to reach a final point of acceptance...of something.

Wishing a baby to just happen while on Rebif is not recommended. So is it time to get back on the DMD track, accepting that being pregnant will never be in my cards? Or is it time to lay off all drugs, DMD and fertility and see what happens? Back to square one, just like five years ago, but this time I do have MS.

It was made clear to Jason and I yesterday that my insides are a "hostile environment". Recent medical oopses...oops, did I say that, I meant to say recent unfortunate medical events have resulted in extensive internal scaring. Not to mention endometriosis, have made motherhood the old fashioned way next to impossible.

I have to make a choice. Time is not on my side. Though I am not "old", any time waited is time past in reproductive years - decreasing the odds of successful "other methods" of conceiving. And as far as I am concerned, time is not on my side with MS either. At the drop of a hat, things can change or maybe just as time goes by...things can progress.

When I was waiting to start my DMD 3 1/2 years ago, I likened it to standing in the middle of a busy intersection, unprotected. For myself, I believe in the DMDs.

While I may have the inclination to take it as it comes for many things, I can't be this way with MS.

Emily

body twitches

Since the beginning of my new reality, I have had random body twitches. Finally, they are reaching a frequency that I find concerning. All I can think about, is that I need to get back on my DMD (Rebif)...maybe it will make a difference. Did stopping my Rebif allow this to happen sooner rather than later? If I stayed on the Rebif, would it have not happened at all?

At first, the twitches were few and far between, not even a weekly occurrence. We joked that they were my "tell" in a poker game. I mostly had a shoulder twitch when I was stressed. Now, the twitches encompass more of my body, and I think, are more noticeable. They sure are to me!

I can be lying in bed, trying to fall asleep, and my leg jumps. Nike the cat, doesn't like this so much, as it disturbs her blankets. I can be talking with Jason, and my shoulder-upper chest-head area will jerk. It isn't a tremor - it's an all out movement: out of position and back again. The freakiest time is when it is my entire body - lying in bed, and I do the worm...or a body wave.

I don't know if there is anything I can do about it. When I first started with Dr E., my MS specific neurologist, I asked him if the twitches were caused by the MS . His response was non-committal. This was my way of telling him about the issue: I had already addressed it with my first neurologist, who wasn't in to treating symptoms, but rather seeing what symptoms would arise. My GP is supposed to be my primary care provider, even for MS, BUT, as he as told me before, he doesn't know enough about the disease. So, I'll wait another year, and take it up with Dr.E when I see him next.

Emily

in my life

Nobody plans to live with a chronic illness. With our ever increasing knowledge of illness and disease, and we have become a society where we can sometimes go to extraordinary measures to prevent illness. It goes without saying that a diagnosis is almost always a shock.

Before June 2006, I was planning my life with ease. I was making decisions for myself and for my future family based on my health and my talents. I had no reason not to. I had recently accepted a new job, choosing opportunity over money, and Jason and I had purchased a new house as not only an investment, but for a better house to bring a family in to. Life was only going to get better.

And then without warning, everything changed. Without an introduction, no annoying yet curious symptoms, MS was now a part of my life.

The job, and everything connected to it, are now a thing of the past. Instead of this loss allowing me to live under a gray cloud, I use memories of my work days and my success in a short time, to give me confidence.

The house, bright and spacious, selected to hold Jason, myself, our two cats, and a baby playing on the living room floor...is without the later. And this is where I have found myself for months...trying to figure out what role MS plays in this part of my previous plans.

*In previous posts, I have mentioned that two months before "I got sick", Jason and I were referred to a fertility specialist following years of unsuccessful attempts at conceiving. Early this year, I underwent surgery to remove extensive endometriosis. The other relevant information is that further health "screw ups" have made the fertility landscape even more sketchy.

I do not intend for this blog to become about our attempts at a family of 3, but rather how MS is related to all of our decisions, including those related to having a family. I can't keep the two things separate.

Earlier this year, I stopped my Rebif injections. It is recommended that a woman halt her injections a minimum of 3 months prior to trying to become pregnant.

The recent revelation that the MS is in fact progressing has given me great pause.

My 35th birthday has also given me great pause.

My desire to be a mother, and a parent along side Jason, has given me great pause.

My MS clock is ticking. My biological clock is ticking.

I am willing to give up MS.

Emily

this post contains needles

For some time now (well over a year) I have intended to take pictures of the Rebif (22mcg) and Copaxone pre-filled syringes. I know that you have been just itching to know what they look like.

What IS all the fuss about?

I have shared my pre-shot, during-shot, and post-shot reactions with you. You have heard about tears, seen pictures of welts and red marks, and you have read about how these darn needles can cause stress for the whole family. I have let you know when I've found needle disposals in public washrooms, and when I was once able to shoot-and-go at the Rogers Center in Toronto. Ice packs, heat packs, wonderful telephone nurses, and atrocious prices for these DMDs (disease modifying drugs).


Surely you must be wondering what they look like...what does poison...a clear liquid that can burn your skin...liquid gold....look like. Well now you know.

Rebif advertises a smaller needle than the other DMDs. The Rebif syringe is on the right.

This photo is of a Copaxone needle, a needle used to inject insulin, and the Rebif needle.

DMDs - the front-line treatment for MS.

Emily

back to square one

I had almost forgotten that I have MS. The return of the Rebif needle in to my life, reminded me that I live with this life-boggling disease.

Ok, that was a bit of an over-statement. What really happened, is that last night, I restarted my Rebif injections. Jason and I decided last week, that Monday, February 23 would be the day to start up again. I was nervous all day. Nervous, as in butterflies-in-the-tummy nervous.

When the witching hour rolled around last night, I got out my supplies (one cotton ball, one needle clipper, one pre-filled syringe, and one log book), dropped my pants, and poked myself in the thigh. I didn't dither, or dilly-dally...I did it. But from my list of supplies, I forgot to get an ice pack ready. Rookie mistake.

For me, the injection is proof-positive that I live with MS.

A single tear rolled down my cheek as I started to say this to Jason, but he was able to finish my sentence.

I have decided to start the injections back up until we receive further answers regarding my other health issues. Before deciding this, I spoke with a nurse at the MS clinic. The way that I see my situation, it could be at least another few months or more until I know what's going on with me.

If you remember, I stopped the Rebif, as it is necessary to be off the drug for a minimum of three months before trying to conceive. And since that is up in the air, AGAIN, I decided that I might as well look after what I have the power to look after (even if it is minimally). The nurse checked with Dr.E (my neurologist) who said that the benefits of being on the Rebif for four months and then stopping again (as an example) are arguable, so the decision is entirely up to me.

So here we are again - every Monday, Wednesday and Friday - back to square one.

Emily