tonight

Tonight, I need to keep in mind that I am no longer wishing for a new year that is better than the old year. I decided on my birthday, this past August, that I more interested in hoping for better "age years". My year runs from August 17 2008 - August 17 2009.

Why, you may be wondering, would I not wish to start fresh with January 1...well I'll tell you why...because some nincompoop at our New Year's Eve celebration always claims that the new year is going to be "his" year. At times when I was in desperate need of some good luck, and good wishes, he stole the good fairy dust right out of my hands! And sure enough, something absolutely awful has happened to me every year.

The thing is, I'm not sure if I made a "new year" resolution on my birthday. If I did, I obviously didn't keep it. oops. So this morning I was thinking that I would resolve to do something "feel good for me, and feel good for someone else"...all in one monthly swoop.

I will hand write a letter, a minimum of once a month.

Now I just need to decide if my resolution is good until August 2009, or January 2010.

Emily

Christmas photos

Here are our 2 Christmas trees:

First, we have, "Chief" all decked out in festive red mini-balls and gold ball garland:

Then we have the "Real-Artificial Tree" downstairs:

This is the first time we have put our tree downstairs, because it's the first time the walls have been up and painted in the basement! It is also the first time that we decorated "Chief". By putting the tree downstairs, we could also enjoy the fireplace channel in HD...

This was the first year that I wasn't excited about decorating for Christmas. I didn't want to expend the energy required to unwrap ornaments, hang ornaments, and then put it all away again. I was going to be happy without a tree - displaying Christmas cards, and a glittery wire tree on the kitchen table, was enough for me.

But Jason insisted on the tree. And I'm glad he did. I love looking at our ornaments. There are the glass balls that belonged to my gramma, the fuzzy angel face that my mom passed on to me, the tin ornaments that Jason and I bought ourselves as part of our, "every year we will buy a few of our OWN ornaments" series, and there is Jason's dog face ball that he made as a kid.

As long as Jason helps me package up the ornaments - with great care - or I have a super-burst of energy when it's time to take the tree down...it's all good.

Emily

migraine

Hi there! And a belated Merry Christmas!

The days leading up to, and following Christmas day, I had a migraine that I could not shake (not that I shake my head when I have a migraine!). I tried every trick up my sleeve: caffeine, pain killers, super-duper painkillers, ice pack, massaging shower in the dark, nothing, lavender scents, trying to ignore it...and every possible combination of the above mentioned tricks!

I wonder if the migraine came on because I stopped the Rebif?

Emily

pent up frustration

Although I keep a pretty even temperament...emotional level-headedness...take it all in stride...sometimes I just want to have an all-out flailing fit.

Dr. E, my MS doctor called me last night, just to let me know that my platelets are going up...again. He is sending a referral to a hematologist. Yup, it is unlikely that the Rebif is causing this blood trouble. However, this Rebif holiday will prove to be useful in the latest search for answers...just in case I am a rarity. Dr E. says that it would be nice to have the platelet conundrum solved before pregnancy.

"Of course", I think to myself. I never just do something, or act off the cuff!

I have decided to keep the appointment that Dr E. got for me to see a gastrointerologist, and now I will add a hematologist (blood specialist) to my appointment schedule. I was going to cancel the gastro appointment since I had a colonoscopy two weeks ago (and everything is normal) but I am going to assume that there are other things that he may want to do/consider. No sense shorting myself!

A constant theme to this blog seems to be...I just want to live my life. I accept what I have been given, now leave me alone! Why can't they just shove me a machine, and get answers!?

I hate having this feeling of boiling frustration under my skin. I know that in a short bit I will be over it - (my sub-conscious works real hard for me). It makes me feel antsy, and stressed.

Where did I leave my zen....

Emily

I should mention

Yesterday, the cheque which I have been waiting for, made it's way in to my bank account. All money accounted for...present.

Story over.

Emily

pavlov has MS

I feel quite strange without my Rebif. Two injection days have passed, without injections. So on Wednesday and Friday, I felt a bit anxious about my decision. Nervous.

I'm driving through life without a seat belt.

The needle package wasn't on the counter, acclimating to room temperature prior to injection...a couple of times, I almost went to the fridge to get it out.


My timing is quite good, because I was due for blood work on Thursday. So that means that I will have a starting point, marking my blood chemistry at the beginning of my holiday. Which brings me to letting you in on WHY I have decided to take a holiday.


I will be having another surgery early in the new year to clean up the remainder of the endometriosis (discovered in June), and have a better look at my post Appy-Gate tubes and ovaries (damaged in August from that darned appendix). According to my gynecologist, after surgery will be the best time to try and conceive. So, in preparation for this, I need to have been off of Rebif for three months.


***If you are new to this blog, I'll fill you in. I had my first attack of MS, and my first visit to a fertility doctor both in the summer of 2006. The MS attack was new and life-changing (ok, and permanently debilitating), but trying to get pregnant went on for over three years before I decided that it was out of my hands. Then this summer, my appendix burst, and my abdomen became infected. This was fine for my MS symptoms (knock on wood!) but not so good for my chances of conceiving.***


Let's get back to the present...


I don't think that I will ever know if this is the right decision. But I think about what I was told by an MS neurologist in November 2006, and that is if I don't try and get pregnant, I will forever hate this disease. Wanting to be pregnant came long before MS. I want a fair shot (PCOS under control and no endometrias) at this opportunity. But I also recognize that my "fair shot" was ruined by the medical negligence I suffered from this summer. *sigh*


I'm practical. Really. Jason and I have set a time limit as for how long I will remain off of the Rebif. We have also discussed fertility drugs, which have obviously been recommended, but we're feeling lucky on our own...it's our time. please.


lol...doesn't that sound practical???


Emily

holiday

I debated about inserting another video HERE...but thought better of it. Curious...Madonna, "Holiday".

Today is a needle day. But I am now officially on a therapy holiday. This is a mutual decision between Jason and I. This is not a decision that has been influenced by doctors or blood work. However, should I discover while on my holiday, that I feel a lot better physically (as one should on a holiday!) and my blood work changes - than I may not return to Rebif.

I'm nervous. I guess it is similar to when I was transitioning from Copaxone to Rebif...or when I was waiting to start therapy for the first time...I feel like I'm standing out in the middle of a busy intersection...saying, "Hit me". But what is different about it this time, is that this is MY decision. Maybe later I will get more "share-y" about why I have made this decision.

In the meantime, my fridge is still stocked with needles, if at any time I decide to go back.

So, I'll close this Bit with... a video...how could I not...it's time to get your groove on...



Emily

Feed the World

This is, in my opinion, the best Christmas song ever. Ever. Maybe even just the best song ever...next to Jack and Dianne!

did you know...

Ok, so I have mentioned that my Rebif, medication injections, are called "therapy". I'm not sure if in the case of MS, this is limited to the disease modifying drugs, or to any drugs to help deal with the disease, and not the symptoms. I would also assume that other diseases consider their drugs as "therapy" as well.

Well, I have recently learned that if you stop the "therapy", with the intention of returning to some kind of "therapy", you are on a "drug holiday".

A "holiday" from "therapy".

Such nice words for such a poor and un-kind situation.

Emily

what I would say

Dear Owner

I would like to apologize for any disruption or loss that my illness has caused you or your business. I am sorry for being motivated, anxious, and selfish enough to try and return to work. Had I known ahead of time that it was going to cause you to have to adjust, and maybe do some work yourself (should my disease relapse), I would have thought about it ten times over, instead of nine.

As for the vacation pay that I accrued in the nine months that I worked for you, please pay it to me whenever you see fit, because, as you said so kindly in our last correspondence, you "deserve patience" on my part. I should have known that patience is what you need, after having made the agonizing decision regarding last year's Christmas Party.

It was irresponsible of me to think that I contributed in anyway to your business in the year leading up to the party. Any computer designs or colour selections that I made were only out of the goodness of my heart, no thanks or payment required. You were right to only invite full time employees, the wife of your partner, and the man who owns the business next door, to the party.

I would like to sincerely thank you for what you have brought to my life. You have taught me about sacrifice, patience, entrepreneurial spirit, tolerance, inclusion, exclusion, celebration, and sharing.

May your head and heart rest easy,

Emily - the employee who got MS and made you detest long term disability

P.S. Not that I think you will, but should you ever knowingly hire someone with a disability, (or have such bad luck a second time around that someone becomes disabled while employed by you!) think twice before hitting the send button on your e-mails. The next person might actually sue you, and have proof of your discrimination.


*sigh* I decided that if this blog is a place for me to vent, and let it all out...there it is. This is what I would write to the previously mentioned ass****, should I think that it would benefit me at all. Alas, I know that it wouldn't do me any good, but maybe just putting it out in cyber space will be enough.

Since I began blogging, I rarely posted of my work experience, assuming that I was showing my employer a level of respect by not letting others know what he is really like. But if this blog is to educate and inform of what MS is like for me...than I have done you and myself a dis-service.

Emily

into every life...

haha, I'll bet that you thought I was going to say, "Rain will fall". But no...not today. Today, I say, "Into every life, ass*!%#&@ will walk".

For me, such a person comes in the form of an individual who seems to feel as if my illness, my attempt at regaining bits of the life I had "pre-attack", and subsequent fall, are his own bitters to swallow! I have made his life difficult! And..."they deserve patience" from me, when over 10 days ago I asked for my accrued vacation pay that has been sitting in his bank account since June 2006...and I didn't receive any acknowledgment until I asked for a second time!

May he walk out as quickly as he walked in.

Emily

Canadian Political Leaders

I wish that I had stumbled across this before our National election...but it is still fitting considering our current crisis...

I'm so busy!

Well, this manual injection business is going well.
'nuff said on that subject.

My days are so busy. Yup, being a House Manager, kitty cat masseuse, and a freelance designer is tiring...and fulfilling. On top of those duties, I have books to read, television shows to watch, Scrabble games to mull over, and naps to take!

Yesterday, I worked mostly as a designer...or as a seamstress. I have become reacquainted with my sewing machine, thanks to some creative inspiration and some friendly accompaniment.

Although neither of us are sewers (even though I own a machine!) C-Dazzle and I recently fell upon the idea of a crayon roll-up that we could make, and give to our nieces for Christmas. For myself, the fun was in selecting the fabrics (3 patterns per roll-up!) and then staring at the finished product! Coming up with a prototype (I should just say pattern!), cutting, pinning, and sewing...not so much fun...but well worth it.

I have also been on an earring making kick with my beads...

What would I do without my hobbies?!

Emily

Rebiject

I'm giving the Rebiject a break...before it really, really, hurts me.

For some reason, I have developed a reactive "JUMP" when the GO button is fired...and that "nasty" liquid (that would be the Rebif) begins to enter my flesh. "Nasty" because it hurts, but wonderful still in it's own way.

As you may have guessed, it isn't good to jump when you have a needle in your arm, or leg, or upper bum cheek. It doesn't matter if I do it, or Jason does it, the click sends me through the ceiling, and that makes the "nasty" stuff hurt even more.

Tonight will be the first night for Jason to do a "Manuel" in my arm. Manual injections aren't new to us, we did them with Copaxone in certain areas on my body...but manual Rebif by Jason will be new.

Excuse me while I go and search for my inner Zen self...

Emily

a different kind of post

I want to mix things up a bit...

Jason and I just got in from a walk, and I thought that I would share part of our conversation with you.

First, let me set the scene:

It's about 7:15 in the evening, a late November evening to be exact, so the darkness is out in full. The ground is covered in freshly fallen snow. We are careful to walk facing the oncoming traffic - if there was going to be traffic. We would walk on the sidewalk, but there isn't one.

I'm feeling quite toasty and warm in my new winter jacket. It's all black, with a big zip-up collar, an attached hood, and it comes down further on my hips than my previous winter jacket. My mittens are black, and since I switched them to their proper hands, they are quite cozy. My touque (a Canadian winter hat!) is pink with white stripes.

Finally, three quarters of the way through our walk, an approaching car! I fell in line behind Jason and noticed that his jacket (new 2 years ago) has reflective properties to it. Although it is mostly dark blue, it has silver toned letters and stripes that are reflective.

So here is the conversation:

Me: My jacket doesn't have anything reflective on it.

Jason: Let's see...well maybe the little words are a bit reflective..

I looked down at the small lettering on the cuff of my sleeve. Jason fell in line behind me to check out the back of my jacket.

Jason: Nope. You aren't reflective. You see...I'm dressed for safety. You...are dressed for fashion.

Me: Well then I guess that I will have to stay with you...so that you look good.

*smiles*

Emily

knowledge and ignorance

Ignorance is bliss.

Knowledge is power.

When I was first diagnosed with ADEM (eight months prior to the diagnosis of MS) I always felt as if there was something that my neurologist wasn't telling me. I can remember using the expression, "He seems to be waiting for the other shoe to drop".

Today, I believe that the manner in which the original neurologist introduced me to my "attack" has proved to be a blessing. I never received more information than I could handle, and I didn't receive any answers to questions that I didn't ask.

I have been trying to figure out how it is that I have handled the past two and half years as well as I have. Yesterday, I realized that for me, ignorance is bliss, and knowledge is power.

Knowledge:

I have filled my life with MS related information. I neither hide from, nor hide, my disease. I believe in the importance of learning and sharing any information that I get my hands on. I encourage my family and friends to do the same.

Ignorance:

I don't know everything about my own situation, I still believe that. If you ask me how many lesions I have/had, I can only tell you "countless". I can't tell you where I would fall on a disability scale (no pun intended!). I once wondered if I have "black holes" in my brain, but pursued it no further.

So with knowledge of the big picture, and little about the fine details, I find myself more at ease with my own situation.

Does that make knowledge bliss?

Emily

how I'm dealing with word finding

Once upon a time, I was articulate, well spoken, and used complete sentences in conversation.

Now, I pause...mumble, struggle to remember dates, times, words...

I'm sure that I have told you how I, lover of colour and all things design, have completely called something by it's wrong colour name...but at least I knew that it was a colour! On the other end of the spectrum, I fail to see the relationship between a "needle" and a "noodle", but my brain seems to think that in the moment, these two are interchangeable.

So I'm not sure if I should be bothered by my latest verbal gaffe. In some aspects, these two items totally relate to each other, and in another...not so much.

Jason and I own a six year old mid-high end luxury SUV (I'm telling you that, because it is important to the definition and description of the event). Over the past couple of years, it has had its share of recalls and other service related troubles...expensive troubles. This past week, she (the SUV) is in the shop again, and I called my parents to express my disgust with her.

In a voice heightened with emotion...in a conversation free of my usual sarcasm and jolliness...a conversation with serious undertones, due to the amount of dollars attached to the subject...I blurted out,

"It's a MELON!"

Chuckles. Laughter. Almost hysterics on all three telephone receivers.

"Don't you mean, "lemon"?

Right letters. Wrong order. At least it was still a fruit, albeit it sweet, not sour.

Emily

hot off the press

From the Tel-Aviv (Israel) Medical Center (courtesy of CTV.ca)...

Researchers are significantly helping MS patients (including a Canadian!) using the patients own stem cells. By removing mesenchymal stem cells from bone marrow, which can become heart tissue, bone or nerve cells, growing it in large quantities, and injecting it back into the patient...existing damaged nerve cells are being repaired. The key is that it must be done early in the disease, before irreversible changes occur.

***my own note, What is considered to be irreversible? How do they know?***

A specialist at an Ottawa hospital is hoping to speed up this research, and bring the treatment to Canada.

Even when I am just starting my day, someone, somewhere, is working on halting and helping MS.

Emily

diabled parking - again

I think that I had intended to mention this some time ago - and I didn't. My trip to the hospital the other day reminded me that I wanted to share this with you.

The Winnipeg Parking Authority recently (as in within the past six months) changed the parking rules for people who have disabled parking permits. In the past, the permit allowed the person to park for free in City parking lots and street spaces. Street parking spots were accompanied by individual parking meters.

Individual parking meters are now a thing of the past, and free parking for disabled persons has also been wiped out. Instead, you pay for your parking at a central meter, and return to your car with a ticket. You can either pay by cash, or credit card, and can even pay by telephone! This insures that you don't have to hurry back to your car when your time is up, you can phone in and charge it to your credit card! whooppeeee! The city is also promising designated handicapped parking on the streets.

There are some obvious reasons why disabled people do not benefit from this! But on Monday, when I experienced it first hand, I realized how poor it really is.

It's November, and Winnipeg has already been hit with snow-rain-sleet-freezing-thawing-freezing weather. This makes for crunchy, slippery, and uneven sidewalks (already a challenge for a well-moving person, not to mention a person with mobility issues). But I crunched along, thankfully at this time, with the grace and agility of a well-moving person. When I arrived at the central parking meter, I discovered that it was at curb level, at the base of a cement pad slope. I would guesstimate that the slope equalled about a 12" (one foot) drop.

In fairness to someone, the cement pad slope was clear of ice, snow, and any other debris...but come on! What if I had a walker, or a cane! The Parking Authority thinks that they are doing me a favour by letting me call them, and charge the fee to my credit card.

The change in parking policy is a step backwards for equal and accessible living!

Looking for something witty to say,

Emily

Rebif please

I think that my appointment yesterday with Dr. E was a waste of time. On the plus side, I arrived early, and got called in right away...by Dr E himself. This meant that I didn't need to see the nasty nurse!

While he isn't refusing to prescribe Rebif, he is highly suggesting that I switch to a different drug. The reason for this is that although he does not have to test my lipase or my platelets, when the high numbers crossed his desk, he must investigate. Since a conversation that he had with my GP provided no further insight in to these mysterious levels, he must assume that the Rebif is the culprit. Elevated lipase is not usually an issue with Rebif (that's why he wouldn't test it under normal circumstances) but documentation does show that it CAN become an issue.

I don't feel that I left his office with any clear cut decisions, and I don't think that he feels that any decisions were made either. I mentioned that I would like to wait until after my tests in December, as this could provide us with some answers. We also discussed the option of a "drug holiday" (two weeks with no drug, but the potential of a relapse). We talked about Copaxone, and why I won't return to it (welts!). And he talked about Avonex (once a week, self-injected intra-muscular injections)...and as a last resort, Betaseron (another beta-interferon like Rebif). He wants me to make educated decisions.

In the meantime, he has sent a referral to a gastrointerologist for me.

I think that I should host an open house for all medical specialties...come and check me out...coffee and cake will be served!

Emily

Rebif Rebif Rebif

My MS doctor has been closely monitoring me while I am on Rebif. If you remember, I went from weekly blood tests, to now monthly blood tests. He wants to keep a close eye on my liver enzymes, which, if I haven't mentioned yet, are currently normal. He takes his monitoring quite seriously: I only ever receive 8 weeks of Rebif per refill. He also calls me...himself...to let me know what levels are out of the normal range.

This means that every two months, my pharmacy has to request a renewal from the MS Clinic. In turn, this means that I have to keep a close eye on my supply, and any refills that I have, and make my request to my pharmacy in good time, in order for them to hear back from the Clinic.

Before I left for Ontario (which was on October 30) I called my pharmacy, and requested that they request a renewal. On Tuesday of this week, I called the pharmacy and ordered a month of Rebif.

Are you still with me?

Yesterday, my pharmacy called me to let me know that the Clinic would not renew my Rebif. I know that I have exactly 2 needles left, and this is no time for games! Apparently, Dr.E (my MS doc) wants to see me before he gives me more Rebif. A quick call to the Clinic gets me set up for a visit with Dr. E this coming Monday.

I know exactly what is coming. In our last conversation, Dr E. said that he wants me to consider stopping the Rebif. I'm not exactly sure what he is basing this on. My liver enzymes have been coming in normal for the past two months, and the hepatologist isn't concerned.

What is high, are my platelets...and my lipase...oh, and my hemoglobin is low.

This has been since my "Summer 08 Trauma...Appy-Gate".

I'm going to ask Dr E to leave me on the Rebif while my other medical issues get sorted out. (which is now going to be in December, as my colonoscopy was rescheduled). I'm also going to ask for an MRI. I haven't had one since April 07, and I'm curious. On the outside, it looks like the Rebif is working for me...but what about inside? I'm a prime example of the lack of correlation between the presence of lesions and the visible presence of disease.

I feel the need to repeat some past whining...just let me be!!! Why can't I have a month of no doctors? Why does someone always make me think about this disease?

I'm not sad about this...I'm frustrated!

Can I back up for a minute...

I am assuming the Rebif is working for me. I base this assumption on the following: I don't have any new symptoms. I think that just because I have moments of dancing around the house, that it is working. But I know better than that. If you are one of the lucky few to have a had a conversation with me lately, you would know that my brain is struggling. Also, I'm not wobble-less and I'm not a bundle of energy (adrenalin yes, energy...no).

Maybe I shouldn't be so quick to defend the Rebif. It just feels like the right thing to do because I don't want to go back on the Copaxone, as Dr E has suggested.

**Head on Emily...head on. This is no time to put your head in the sand.**

Emily

injections

I'm home from my trip to Ontario. Before I left, I mentioned that my Rebif injections are becoming a bitter part of my life. A result of my bitterness, is that Jason has become bitter towards the injection as well.

My "vacation" presented itself as an opportunity for me to become more comfortable (and willing!) to do the injections myself, and for Jason to have a break. So while I was away, Ladyfingers performed two of the injections (manually) and I did the other two with the Rebiject (auto-injector). No big deal. But it was a good thing that I always carry an extra needle!

The Rebiject has 3 pieces: a needle cap remover, the needle housing, and the trigger housing. The needle cap remover is a part of the needle housing, that has to be removed prior to injecting. The steps are quite simple: press down the "thingy" in the trigger housing, push the needle into the needle housing, screw the two pieces together, and then remove the needle cap remover.

A couple of times in the past, Jason has forgotten to remove the needle cap remover. Little did I know, the needle cap remover is not a safety device - it is simply a device to remove the needle cap safely. So when I set the Rebiject against my thigh, pressed the trigger housing into the needles housing (the safety release!) and pushed the trigger...I didn't feel anything because I hadn't removed the needle cap piece. At first I thought that I was experiencing an awesome injection...sensation free...then I recognized what I had neglected to do. So I lifted the device off my leg, and pulled the needle cap remover off...

...creating a geyser! Rebif streamed out of the giant plastic needle, arching across the table, and onto the floor.

In the past, when forgetting to remove the needle cap, and after pressing the magic button, Jason has always unscrewed the Rebiject, and started over.

Silly me.

Emily

CPP disability news

No hoops. No rain delays. No spilled milk.

Nothing to prove, nothing to curse while waiting, and nothing to cry over.

So why did I cry?

The process of applying for and receiving Canada Pension Plan Disability Benefits is complete. The wait is over. The hours spent focusing on what I can't do, versus what I can do, have paid off. This afternoon, I received a phone call to let me know that my application for CPP disability benefits has been approved.

So again, why did I cry when I got the news?

Well to me, this means that somewhere out there, in the paper universe, there are papers that outline a grim past, present, and foreseeable future for me. Whatever medical proof my doctors gave, represents a disabled person. The key words regarding the eligibility for the benefit are "severe", "prolonged" and "indefinitely". Not too mention, "under the age of 65".

When I realize that I am considered a disabled person, I get upset. I don't see myself as disabled. Instead, I have unpredictable, and often all consuming, physical and cognitive challenges...that you yourself, likely don't experience...unless you also have MS ;) So the idea that someone wrote medical jargon (that I actually feel I don't know the half of what was said...I often feel as if I have been left in the dark concerning what actually happened to me) that a group of other people then read and analyzed, compared it with another person's medical jargon, compared it with my own self-account of my day-to-day life, and decided that I'm disabled, and am therefore entitled to some government money.

I think that the reason for my tears, is that I don't want anyone to think that I feel sorry for myself. Although I have experienced what society commonly considers a "loss" or a "tragedy", I don't like the idea that someone might think that my story is a sad one. When you are challenged with an illness (for lack of a better word) I believe that you have a different load to carry through life. I believe in the power that my reaction(s) to these event(s) hold.

Don't get me wrong...I still feel sad once in awhile. But there is probably only ever going to be one other time when it would be better to have a diagnosis of MS than now. So for now, I accept the help that I have been given, and thank my lucky stars that it's the year 2008. I accept the label that I have been given...and I will strive to change the stereotype that comes with it.

Maybe that's why I cried.

Catch you in a few...

Emily

needle day

It's needle day.

Chin up. Smile on. Sit up straight. Put on a happy song!



My last needle was on Friday, and it caused some friction between Jason and I. Hopefully, with two "needleless" days behind us, tonight will go smooth.



I'm just not into it.



I jump when the "big click" happens with the auto injector. We hardly ever use the needle "manually", as finding the right "speed" for the injection is a challenge. If you go too slow, or too fast, it burns. There was a time when I could give myself the injections, in either fashion, and now...I can't bring myself to do it.



The friction between Jason-the-needle-man and I is that he gets brought down by my "down". So then I get upset with him for not being the support that I need at this time. I want him to encourage the needle, and bring me back to where WE were at the beginning of this. I want him to make me laugh as he prepares the needle...this really isn't a stretch for him. He is a man with many voices and inner-characters! Instead, Jason is suggesting that maybe I should stop the Rebif for a bit. I don't like the devil's advocate routine on Monday's, Wednesday's, and Friday's.



We will both have some time to think about things, as I am off to Ontario on Thursday...in search of Rebif-pushers. Or maybe in search of my own inner strength on this one. I will need to administer 4 needles without Jason...



I have to go and take the needle out of the fridge (the butter keeper, to be specific)



Emily

I've been tired

I finally have a moment in which I feel like I can make a somewhat cohesive and worthwhile post. It may sound as if I have been busy, considering that I "finally have a moment", but the truth is quite the opposite. The correct key word in my opening sentence is "cohesive".

I have been zonked. I am starting to have a better time when it comes to falling asleep at night, and it is leading me to sleeping in until 11 AM the next morning! That makes for 10-11 plus hours of sleep. And what's worse is that I am a stubborn person when I am tired. I'm not ornery, just stubborn. I don't allow myself to just lay down. I feel as if I have to accomplish something everyday: load of laundry, unload the dishwasher, sweep the floor. But when I push myself to do things when I am tired, all the other ugly MS symptoms rise from within me. It's a battle that I have with myself, that I am destined to lose.

Lately, it's my memory, in particular word finding and retrieving thoughts, that is suffering the most. Luckily, I only talk to people who understand, and who can read my mind. I also woke up yesterday with a bobble head. Not wobbles, but bobblehead. They are different. A bobble head is just as it sounds (and just like the toy)- my head feels like it is moving updownrightupleftdownrightup etc. Luckily, some Bonamine helped that. Wobbles are more of a whole body sensation.

My other intermittent symptoms have been lazy pinky and ring fingers; an inability to look directly up at something while standing; and eating a meal is pure torture for all involved because it takes me sooooo long.

I have been wanting to mention to you that a couple of weeks ago, Ladyfingers and Dude attended a talk involving a local MS neurologist. For lack of a better word, I was honoured. They took time out of their schedules to learn more about my disease. I understand that they are my parents, and that I have provided them with plenty of information...wanting or not. I didn't ask them to attend, and I can't describe how much it means to me that they did...they even asked questions! They gave me (and I am sure that those in attendance feel the same) a different kind of support.

I'll post again soon!

Emily

election day

Whew - election day is finally here.



This has been a very tough decision for me. I was mulling it over it my mind while I clomped along the gymnasium floor to the makeshift "voting booth". I continued to mull, as I picked up the pencil. There was a chair beside me, and I contemplated sitting down...not for balance or because I was tired, but because I just didn't know what to vote.



Typically, I rush to the booth, make a strong and confident "X" on the paper, and I'm outta there!



Not today.



Even as I walked away from the cardboard screen, and shoved my ballot in to the box...I wasn't sure of my decision. When in the car, I wondered if I could go back in, and announce that I had changed my mind, and needed another ballot.



What's done is done.



Emily

how I'm feeling: Pt. 2

I have another inner secret to let out. It's kind of like being tired of the needles...it's something that I feel, but don't get too worried about me...it doesn't ruin my days. I periodically feel overwhelmed. Yup.

I don't have any outside imposed responsibilities, and I feel like I have too much to do...or that I am missing/forgetting something. As I mentioned in a previous post, I do have a number of medical tests/appointments this month. I'm also flying to Kitchener at the end of the month...time to visit Ladyfingers, Dude, Annie, B, Nickle and 2Penny.

All normal life stuff, without the responsibility of a job. I shouldn't feel overwhelmed.

This afternoon, I was watching my soap opera, as I do most afternoons, and I noticed that I felt guilty for watching television. Then I realized that I had already been out grocery shopping with Jason, washed the dishes in the sink, put other dishes in the dishwasher, and hap-hazardly dusted the open area of the main floor of the house. I should add, that yesterday, I was out for the count all day...just too mentally and physically tired to do anything.

I need to stop this craziness!

I need to find a balance. I actually had that terrible "I'm a food server" in a restaurant nightmare the other night. It has been awhile since those images crept into my head. And if you are wondering, Sunday evenings are still filled with thoughts of "going to work" on Monday mornings (at least, once in silver moon).

****shaking my head****

Emily

just a figure about a cure

From the moment that a cure is found in the lab, after all stages of testing and trials, it would take 5 years for the cure to reach the MS patient.

Will I have to pay to get it?
Will I get it faster if I live in a different province?

Spreading the word,

Emily

more politics

I saw a commercial on television today - appearantly there is an end MS campaign going on right now in Canada.

A large part of the campaign is to fund research and RESEARCHERS.

So while I checked out the end MS website, I clicked over to the Multiple Sclerosis Society of Canada website and found some election information!

The Society asked four questions of each party, and they have posted the answers that they received here:

http://www.mssociety.ca/en/involved/advocacy/advo_incomesecure_resp.htm

You will notice at the bottom of the page, where the party leader photos are, that the Conservative Party and the Green Party have not replied to the questions. If you read the answers provided, you will see that the Liberal Party added an extra tid-bit (a comment pertaining to CPP disabiltity benefits that was not asked of them).

Still undecided,

Emily

needles

Last week, I noticed that I am getting less and less willing to have my Rebif injection. I haven't been able to figure out why. I'm not riddled with injection site woes, I don't suffer from ugly flu-like symptoms hours afterwards, and I hardly ever give myself the needle...Jason gives it to me. It barely takes any time to administer, and it doesn't hurt that much. I get fantastic Air Miles rewards as a result of filling the prescription!

I have been a huge believer in drug therapy. I want to do whatever I can to keep this disease at bay. So why have I turned sour against the needles?

Confused,

Emily

ad slogan

Canada.
We're better off with Harper.

Sorry...still on politics for a second...

I have been meaning to share this...maybe you already noticed it yourself. The above slogan is used in Conservative party television ads. It isn't narrated, but rather the slogan that comes up on the screen at the end of the ad.

I always thought that if I was better off with one thing over another, it was because neither was really a good choice.

Just a thought.

Emily

a bit of politics

Ho dee hum.

I spent last night watching the Canadian Electoral Debate - the entire two hours. This was a first for me (and Jason would have watched the entire drama too, had it not been for a live on-line hockey pool draft). I turned off the television, and found myself hoping for an upcoming political wipe-out...a rise to the top by two of the parties federally on the bottom. If it isn't this time around, I predict that in the near future we will no longer be a country that bleeds red or blue.

Elizabeth May, the leader of the Green Party, appears to be by far, the most intelligent and passionate politician of the five party leaders. Go Greens! It's no wonder some of the leaders didn't feel she should be allowed to participate in the debate!

Still on the election tone...I did eventually e-mail two of the four individuals running for office in my area. We are still waiting for a response from either party, but despite this, we did get some answers.

Following the e-mails (but not in relation to) both parties, the Conservatives and the New Democratic Party, phoned us to ask if they could count on our vote on election day. I answered both calls, and both pollsters received a response of "undecided" from me. I explained that I was awaiting communication from the party on issues that are important to me.

Hours after receiving the call from the Conservative party, I had a telephone conversation with the campaign manager for Thomas Steen, the Conservative candidate. I quickly scrawled down four topics for me to question...I wasn't ready, as I was hoping for a face-to-face, or scheduled conversation!

So I asked, Jeff, what the Conservative plan/view and/or Mr. Steen's view/plan was on the following things:

1. funding for necessary drugs, in particular to even out funding across the country
I didn't get a specific answer for this question. I got the Conservative line, touting their "wait time" guarantees that was set up between the provinces and the feds.

2. caregiver leaves from work
I didn't get a specific answer to this one either, just that it sounds like a good idea, and he then connected it to childcare. I told him that the idea is a priority of the Multiple Sclerosis Society of Canada, and is looking to go before parliament.

3. I don't remember my third question. Seriously.

My last question was also directed as a party question, and as the view of the candidate: What is the Conservative stand on stem cell research, and where does Mr Steen stand on this. If it were to brought up in the HC again, would Mr Steen have to vote as per the party line, or could he vote as he himself believes?

I got a straight answer on this one. Should this subject arise in Parliament again, it would be, as are all moral issues brought to a vote, an individual decision. As for where Mr Steen stands on this issue, Jeff wasn't sure. Jeff felt confident in speaking for Mr Steen on the other issues that we discussed (I still can't remember my third question), but he would need to find out the answer to this last question.

So I did get to speak with someone. While I appreciate the time and effort put forth by the Conservative party, I can't say that they have my vote.

Emily

a bit of whining...

What is on my mind...

I haven't contacted any level of representation from the federal political parties. My time is running out. I don't quite know what to ask of them. I have looked at the Multiple Sclerosis Society of Canada's website, and I am aware of the current priority issues. Honestly, I don't feel like I am mentally "on" enough to have the level of conversation which I would expect (and want) from myself. I guess it isn't so much that I don't know what to ask, but I fear how it would come out in the moment.

Thankfully, today, one of the parties announced federal funding for prescription drugs...with more details to follow when the full election platform is revealed on Sunday. I KNOW that this is something that I care about.

Next...

Falling asleep is difficult for me. There was a time, within the past couple of years, that it would be lights out the minute my head hit the pillow. Not so much anymore. I can't get comfortable. And worse, I can't turn my brain off. Thoughts shoot through my mind, like a nasty game of dodge ball. I never know where they are coming from...no pattern, no rhyme or reason.

Last night, what stands out most to me, is the following thought:

My body (never mind my non-physical being!) has endured enough. This is what makes me wonder if I am actually dealing with things as well as I think I am...it all of a sudden hits me that I have experienced more in the past two and a half years than many will experience in a lifetime. The scary thing is, with my seeming un-luck, I'm likely to go through more!

Sure, I can list the illnesses: MS, PCOS, Endometreosis, Appendicitis, Peritonitis, Pancreatitis...did I leave anything out? But how about the countless needles and IV's? Sometimes the needles, take blood, sometimes they inject heavy duty medications to either "trick" my body (yeah, let's add induced artificial menopause to the previous list) or wrangle in vicious attacks on my body. MRI's, CT scans, ultrasounds...and needles that either snatch a piece of my liver or suck out my spinal fluid. Let's not forget the catheter and the surgical drain. One exploratory laproscopy, one surgical laproscopy, one failed hysteroscopy, and one successful hysterscopy...and a sleep study.

I don't think that I have missed anything. I feel like I'm a science project. Or a lab rat...if only Dr. Schmidt was still my neurologist. In the month of October, I will have two intra-muscular injections to stop my body from producing estrogen. I'm also scheduled for more blood work, and MS doctor willing, I'll have all of my scheduled Rebif needles. I'm having an ultrasound to check out my pancreas, and a CT scan to look at the rest of my abdomen (in particular, to look for an appendix).

Thank goodness my colonoscopy isn't until November! No really, I'm serious.

Emily

Little Advances

I've had a couple of personal "breakthroughs" in the past week.



Last week, Jason and I spent a few days at his grandparents trailer, a couple of hours east of Winnipeg. To keep ourselves occupied, we indulged our interest of "game playing": cards, trivia, cribbage, tri-ominos...and the list goes on. The best part of all, is that I felt "fog-free" enough to learn three new card games! I had enough concentration and memory power to learn new games, and be happy at the same time!



*I was so fog-free that I skunked Jason twice in Crib, and beat him three times at Scrabble. And I won one of the new games.



My other breakthrough happened yesterday, when I drove myself to the shopping mall...on the other side of downtown! I shopped with C. , and I even drove myself home. But let's just focus on that part, and not that fact that I am paying for it with sleepiness today.



Another exciting development for me is that I have read three novels in the past month. I can follow the story, I don't have to re-read lines or paragraphs, and I can hardly put a book down. This is not exciting because I just learned how to read...but rather I have a greater ability to retain and concentrate than I did one year ago. I mean, two years ago, the letters on the page made me wobbly, and after that moving my eyes back and forth to follow a sentence made me wobbly...this is huge!



Small things. Big impact.



Emily

in the news

I have a number of potential posts going through my mind these days: my own health updates; MS news; handicapped parking in Winnipeg (where I live); a man found dead in a Winnipeg hospital emergency room; and Winnipeg's new slogan. It almost feels as if I have been behind!

Maybe I will start with Winnipeg's new city slogan..."The Heart of the Continent". The new slogan has replaced the decades old, "One Great City" slogan, found on the road signs that greet motorists entering the city. The problem is, Winnipeg is NOT the heart of the continent, Rugby North Dakota is! Geographically speaking, Winnipeg is the longitudinal centre of Canada...so at best, it is the "Heart of the Country". And we can debate that in many ways...as we could debate One Great City too.

You may have heard more news bits about MS lately, and I surmise this is because people (health professionals, volunteers, those affected by MS) from around the world met in Montreal recently to discuss MS...Living with MS...Global Perspectives on Current Issues (or the World Congress on Treatment and Research in MS). The "hot" vitamin these days, vitamin D, has been highlighted at these meetings, and thus hit the news again. Vitamin D...friend and foe?

It isn't news that a lack of Vitamin D is a possible contributing factor to the onset of MS. Vitamin D levels have been measured in MS patients for some time. Now, studies are looking at if there are successful ways to combat a vitamin D deficiency early in life. But a lack of vitamin D alone is not the cause of MS. So the relationship of D and other issues (including hormonal) are being investigated. Using vitamin D as a treatment for pre-existing MS is also being studied.

*I was told by my MS neurologist, on my very first visit, when he saw the demylenation in my brain, before he said, "It is MS"...he asked me if I was taking Vitamin D. He said that I should be taking 1000iu daily...it won't hurt to take it.

If you have some time, take a look at this:

http://www.atlasofms.org/index.aspx

Last night, unable to fall asleep, I stumbled across this "atlas"...and fell asleep feeling happy to live where I do while learning to live with MS. To sum it up for you, a few years of world-wide research and questionnaires were used to form the stats found in this atlas. The atlas breaks down many aspects of MS (globally!) from age of diagnosis, to home benefits, to driving regulations, to alternative treatments, to existence of government drug funding...and more!

Here are some of what shocked me:

Can a person with MS lose their job because he/she has MS...the answer is NO in only a handful of countries (Canada, Australia, Paraguay)...the answer is YES in more (United States, Finland, Russian Federation).

Mean age of onset (in 1997): Canada 24.5, United States and United Kingdom 32.5, China 30.8, Italy 25

Percent of eligible people with MS who receive disease modifying treatment: Canada 75%, Russian Federation 50%, Australia 80%, Pakistan 90%, United States no data provided.

These numbers (and the hundreds more in the atlas) do beg for further information. Maybe if I read further into it, I would answer my questions. But when I finished reading approximately one dozen of the stats, I was happy to be in Canada.

Okay - that's enough for now. My brain is tired.

Emily

yes...I have more to say

I really need to go to bed, and Jason is pacing around me...either waiting for the computer, or waiting for me to go to bed (he needs me to check for monsters under the bed before he gets in himself). But I feel as if I have more to say to you, and it just didn't fit in the other post.

Yesterday evening, I received a telephone call from my MS doctor. He wanted to tell me that my blood work is still off (however my liver enzymes are consistently high, then lower, then high, then lower...which is acceptable to the hepatologist). My platelets are high, my hemoglobin is low...and a couple of other things.

Rebif, a beta-interferon, has been known to LOWER platelet counts, not RAISE them. From what I can figure from the conversation, he is strongly suggesting that I stop the Rebif and go back to Copaxone. Either he is getting tired of monitoring my ALT and AST every month, or he feels that since Rebif has some effect on my blood, maybe it is just best to stop it all together.

His phone call upset me. Number one reason, I don't want to hear that I should change my drug...in my opinion, it works! Not that we know about my lesion load, but I certainly don't seem to have had any relapses while on it.

The other reason that it upset me is that I just want to be left alone. I don't want any more problems with my body! I don't want any more doctors! I just want to live my little life in peace. Find happiness and contentment in my new reality. Discover things that I can learn within my four walls...grow at my own pace, and within my abilities. Be open to change if necessary. Do things that I can be proud off, and make me feel worthy.

And what do I have to do today...I have to check in with the "extra" surgeon who was called in for my laprascopy last month. His job is to determine what went wrong that awful week in August. He isn't even convinced that my appendix burst. All he knows that I had one memorable and gross abdomen...but why...is a mystery.

So in order to investigate, he is performing a colonoscopy in November, and another CT scan sometime before that (to compare to the previous two that I had in August). This isn't my first colonoscopy...and likely not my last. Intestinal problems are in my genes. This time around, biopsies will be taken of the intestinal lining. So much for "A-Ok" three years ago! I also need to request from my GP that I see a hematologist (blood doctor).

My shell is cracking. I am finding it harder and harder to "roll with the punches", "take it all in stride", and live "one day at a time".

So I'm going on a small holiday...because my schedule is clear (hehehe when is it not, but for doctor appointments). Jason and I are travelling to lake country for a few days. Jason is gung-ho, and I'm a bit begrudging...but I'm "taking one for my wonderful team". Jason takes a lot...I might even let him win at Scrabble...but not Trivial Pursuit!

Talk to you when we return,

Emily

really...I'm intelligent

*sigh*
Has the "smart" area of my brain been compromised by frayed wires (aka MS) or by a 26 month "hiatus" from "professional" communication?

It has been lovingly pointed out to me that both my speech and my written word (both grammar and spelling) have declined since I "got sick".

Even Jason's Scrabble scores are getting closer to mine!

I certainly can say that I notice a difference in my speech/conversation. I pause a lot more, and I have to search for words. And if I don't pause, or search...I use the completely wrong word! For example, I have repeatedly referred to my needles as "noodles".

I can say this...I type my blogs as if I am saying them out loud. Isn't that the best way to have a conversation with you?

So as for why my communication skills have declined...I don't know. Do I care....yes. A part of me believes that NOT working...just being casual, and hanging out at home has played a role. But I have read about other people living with MS who feel that at one time, they too were succinct, clear...or crap, I can't think of the words!

Thank goodness I'm still polite and cheery...that hasn't diminished!

Emily

election!

The Prime Ministers' seat is up for grabs! An election has been called by the Prime Minister, with a polling date of October 14.

In the past, I have followed political party buzz by reading the headlines, and skimming the articles. Admittedly, my heart has a lot to do with how I vote...but this time, I'm going to use my head.

Yes, I am going to give my decision more thought, but more importantly, I'm going to research where each party stands on decisions, beliefs, and support of matters that mean something to me.

I'm not talking about the environment or social issues. Of course, these things mean something to me, but I said that I am going to use my head...my brain...the area most compromised by myelin eating inflammations.

I want to know where the political parties stand on issues concerning and involving citizens with Multiple Sclerosis and there families.

Research. Accessibility to drug therapy. Income security. Assisting caregivers. MS society and the federal budget.

I'm sure there is more, and this will be fine tuned as we near the date.

Maybe you should think about why you vote for the person you do. It can be a tough decision: do you vote on a local level or on a national level. What can my MP do for me and for MS? What can the Prime Minister do for me and my MS?

What do you think?

Emily

I couldn't make this up

As the title of this post says, I don't make this stuff up. If someone were to make it up, I'm not sure if the person would be a fiction writer, a sci-fi writer, a mystery writer, a horror writer, or a fantasy writer. My life is beyond the imagination of any creative person...my life is like the work of a wannabe writer who writes a piece so far out there, that no one will publish it because it's just too ridiculous and no stretch of any readers imagination could follow it.

Do you follow me?

I have pancreatitis. Yup. Recent blood tests produced the diagnosis...which we weren't looking for. I have felt since my surgery that something just isn't right. I'm not interested in eating, and when I do eat my insides hurt. But I hurt when I don't eat too. We were simply chalking up my discomfort to "healing" and having been "very sick".

So I'm on a liquid diet, but not in the hospital yet (since I'm not vomiting). We are waiting for some repeat blood work to determine if I am trending down or up. Ironically, before I left the hospital on August 15, the numbers were already higher than normal.

*the pancreas produces digestive enzymes and can become blocked, inflamed, or infected

On another note...

I had my scheduled telephone check-up from my Rebif nurse, Elsie, the other day. I shared my recent health adventures with her, and then found out that she has to share the information with Health Canada. Health Canada tracks health related issues of patients on Rebif to look for possible trends/side effects of the drug.

As for the current state of my relationship with Rebif...it's good. I have gotten back into the habit of taking pain relievers when I go to bed to avoid being awoken by all over body aches at 1 am. My PID days are fairly decent...I'm not bed ridden on Tuesdays, Thursdays, and Saturdays. The injections themselves do produce some burning, but nothing that makes me yell or cry.

Excuse me while go and enjoy a Popsicle...

Emily

another phone call

It's after midnight, on Sunday. For the past few nights, the sandman has not come to visit me at a decent hour. Last night, it was sometime after 3am! I have restless legs, and they are moving at full speed. I try to fall asleep before the leg jerks start, but I never can.

So instead of getting frustrated, I thought that I would let you know about a telephone call that I received yesterday afternoon (Saturday). The surgeon whom I saw at the second hospital, who is named in the letter written to the hospital...whom we feel failed to do his job...called me. He felt that it was something that he should do.

He had a lot to say, and his tone was genuine, and un-rushed. He did apologize for what I have endured, and he agreed that surgery was needed. He thought that I was getting it...from the gyne department. He referred to it as mis-communication between the two departments.

I feel good that he called. Honestly, I think that we are all surprised that he did call, or at least call himself. It doesn't mean that the patient safety review is off the table...this slate is not clean.
But this has been a good start.

I'll keep you posted,

Emily

fast action

I barely hit the PUBLISH POST button on my previous post (making it viewable to all) when I received a telephone call from the OTHER hospital involved. The patient relations office wanted to let me know that they have received the letters, and the Patient Safety Review that we have requested is underway.

The review could take over a month, as the staff members that perform it, do so on their "own time". Interesting.

Emily

the truth about letters

My recent hospital and health experience has been emotional. I believe (as do many others) that the situation, for the most part, was unavoidable. That isn't to say that appendicitis is avoidable, but the hospitals and doctors did not do their respective jobs. My situation was not handled efficiently, effectively, or within basic medical practice.

For the past few weeks, Ladyfingers has lived and breathed this experience. She felt, along with the support of Dude, Jason and myself (and others too many to name here) that questions needed to be asked, and a thorough investigation into my entire ordeal needs to be made.

On Tuesday, we mailed about a dozen letters, directed towards two hospital CEO's, all doctors involved, and patient advocates. The amount of time, thought, and energy that went into these letters would blow your mind. Every detail was carefully recounted (often more than once) and then put to paper articulately and purposefully.

Among the people who support the letters, there are people who do not. But why? Maybe if you have never gone through such a situation you don't understand. Maybe if you aren't close to someone who has gone through the situation you don't understand. Maybe if you don't allow yourself to open up to the reality and possibility of emotion in life you don't understand. Or maybe you don't understand, if you are afraid of repercussion, or rocking the boat.

The letters are written because the institutions and people employed by the institutions need to be aware that their actions have repercussions. They need to be reminded that they are dealing with human beings, who not only have emotions, but have intricately designed bodies that can be harmed and scarred. Letters have the ability to remind the machine (or the boat) that real people are involved.

And if you are sitting here reading this, thinking to yourself, "So what. Good luck getting a response". Shame on you.

We mailed the letters on Tuesday, and by Thursday evening, we had our first response. My mom and dad, and Jason and I, received an e-mail from the President and CEO of one of the hospitals. He will seek out answers to our questions, and he apologized for the trauma that I went through.

And....if you are still skeptical...no, it isn't a form letter. By acknowledging our letter, he has put himself out there. We know that he knows...the ball may be in his court, but the power is in ours.

Emily

changes in the air

It's that time of year...the season is changing, the new school year is starting, the new television season is upon us...it's a time of change and welcoming new experiences. It's kind of like New Year's Day...starting over.

I am starting over, in my new official role as House Manager-Freelance Designer-Kittycat Masseuse. I received word that my long term disability will continue...no squabbles or questions asked...just periodic check-ins.

You may also be wondering what happened with BB. Let's just say that thanks to my recent medical trauma, I went out on my own terms...as I wanted. I'm at peace with this now...it was my decision, and I fully recognize* that I am not able to work.

I want to embrace my new role. I don't want to be a couch potato, or a bump in my bed. I have spent the past two years hanging around my house in sweat pants and old t-shirts. My other clothes are work clothes - dress pants and button down shirts. You may think this sounds superficial, but appropriate dress can make or break your attitiude, as well as your perception of yourself. Dress the part! On that note, I have found myself wanting a casual wardrobe. It's a bit like needing back to school clothes, or clothes for your new job.

Maybe I need to mandate a house uniform...

Emily

*at least this is how I feel today, and for most of this past week

just bits

I'm hanging in. My recovery isn't going as smooth as I had hoped. A burning sensation in my entire abdomen woke me up last night, and discomfort and pain continued today. I have a call into my surgeon...just to make sure that this is ok.

So on another note...

I am hoping to take part in the trial of an electronic Rebif injector. I don't know much about it right now, other than the company conducting the trial can't seem to get my e-mail address correct.

I'm pretty excited about possibly being a part of a trial...I always have an opinion! I guess in a small way, I'll feel like I am contributing to something. I'm not sure if I would ever be interested in a drug trial...those aren't numbers I'm sure I would want to contribute to.

Last on my list of bits for today...

Can you feel fall in the air? There seems to be a crispness in the air and in the breeze around here. I love the fall, not for the colours, but for the crisp air.

Ciao,

Emily

the best medicine

Get up and go...is what my brain had this morning. No fog. No fatigue. No wobbles. No sleepiness.

Yesterday, was not the same. But both days have been plagued by the continuing pain in my chest, a pain that has been present since before my surgery. My diaphragm has been injured by the abdomen infection. Breathing has become sensitive, sneezing is impossible.

I went to my GP doctor yesterday, to make sure that my lungs are clear and working to their full capacity. He ordered a chest x-ray and some blood tests...looking for a way to hopefully give me some breathing relief.

But don't worry too much about me...Jason and I spent a day with friends this week-end, enjoying the sun and surf...taking in some of the strongest medicine around.

The power of friends is often the best medicine to take.

You can take a friend anytime of day, with food or without, and alcohol is allowed...if you so desire. You don't have to struggle with opening a bottle or even swallowing the pill the bottle contains. Friends can make you drowsy, but it's worth it at the end of the day. A friend doesn't cost you money like other prescriptions do, and friends don't have expiry dates. The benefit of time spent with a friend can be seen immediately.

Emily