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
Posted in on byHere 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
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
Posted in Rebif on by
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
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
Posted in Rebif on by
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
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
Posted in on by
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
Story over.
Emily
pavlov has MS
Posted in parenthood on by
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
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
Posted in on by
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
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
Posted in on by
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...
Posted in on by
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
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
Posted in work on by
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
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...
Posted in on by
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
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
Posted in on by
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!
Posted in on by
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
'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
Posted in on by
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
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
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