new recipe

Last night, Jason and I tried out a new recipe! We both thought that the picture of it looked good, and even though we didn't know of anyone else who had tried it, we decided to give it a whirl.

Here it is: Baja Salad







BBQ chicken, corn and pineapple with raw pepper, green onion, avacado and lettuce. It has a BBQ sauce (with additional ingredients) used for basting, and then the same sauce (with less additional ingredients) used for drizzle (salad dressing).

We're going to try another recipe tomorrow - a BBQ burrito!

So maybe you can tell, I've had a decent few days. On Saturday, I made a black bean and corn salad - all by myself. At the same time, I chopped up veggies for burgers, and veggies for guacamole. When I finished, I didn't clean up...I was in desperate need of a nap. Saturday night, we had company for dinner and games. On Sunday, I plucked weeds from our yard, and Jason and I made the salad...and played games. Today...I'm pooped....

I woke up wobbly, and tired. So as you also can probably guess...I haven't done anything today. We're having left-overs for dinner, and then we'll watch a movie. I'm just walking around in a fog. I can't seem to concentrate on anything for too long, and my body is tired.





Here's another recent pic of myself, 2Penny, Nickel and Jason.

Ok, all for now...dinner time!

Emily

routine

I'm not going to set my alarm clock on Saturdays and Sundays...or any other day that ends up being a part of a long week-end or holiday.

*big goofy smile*

Emily

options

I am considering a few job options:

1. House Manager
Duties include: random tidying; preparing the odd meal from scratch; preparing the odd meal from frozen; assisting in grocery selection; selecting musical and visual (television) entertainment; assisting in landscape maintenance; welcoming guests into our home; kitty cat masseuse

2. Freelance Designer
Duties include: selecting paint colours and wall finishes for my own home; providing advice to others on paint colours, kitchen layouts; seasonal landscape changes to my own house; beaded jewelry design and creation; being my husband's and sister's stylist

3. Life Coach/Inspirer
Duties include: living, laughing, joking, listening, smiling, sharing, blogging, learning, grooving

Well, after some thought...I'm going to give all three a shot.

Emily

day three, and another thing

I didn't want to get up this morning. Actually, when I went to bed last night, I didn't want to get up this morning. I'm tired.

But, I got up, ate my breakfast, and put on my walking clothes. This time, I showered when we returned from our walk. We also took bottles of water with us...the sun is hot! So far today, I don't have a "burst" of energy to sustain me for the rest of the day. I napped for an hour and half...and before I fell asleep, I told myself that I would get out of bed when Jason did (he has to return to work)...and I did.

Yesterday, we ended up not walking at all. It was muggy out when we had finished dinner, so we watched the Blue Jay game instead.

What I neglected to mention is that I got an extra bit of a work-out on Monday evening. A work-out for the arms..at least! Jason and I played boxing on our Wii. It was my first time trying it out, as well as tennis. The boxing involved a constant flailing of arms (or at least that's how we played)...real boxing movements, without the resistance of hitting something (or someone). My arms are still paying for it!

I have to go for yet another "extra" blood test this week. Despite the hepatologist seeing me, and saying that all is good...my MS doc feels that the blood work from June 13 is a significant increase from previous. So I have to go again this week (instead of one month from the 13th) to make sure that the 13th was not the beginning of a "big jump".

Going for a blood test isn't a big deal. Repeatedly going for blood tests, thinking that one day the doc is going to yank me off my Rebif is what I don't like. I just want anything involving MS treatment to be a silent part of life...not a constant question.

I'm going to water the flowers now...

Emily

glossary

I had this idea some time ago, and now is a good time to do it...

Our new reality, brought on a new language...here is a list of words and definitions:

Rockstar parking: handicap parking

needle time: a Rebif injection (which happens 3 times a week)

P.I.D day: post-injection day (the day after a Rebif needle)

wobbles: I feel as if I'm moving, swaying, "just got a off a merry-go-round", exaggerated movements: subjective (or is it objective?) vertigo (I'm moving, not the world)

sensitive: wobbles could come on at any moment

"I've got a band-aid on my (insert body part here)": a numb sensation somewhere on my body, most typically my right knee, or right abdomen

not centered: slightly off center (I don't know how to explain it)

fog: brain not totally aware of the goings on

Ladyfingers: my mom

bad day: wobbles, fog, fatigue

clairification

I just want to clarify something. I'm trying to develop a routine so that I feel as if there is more to my life than just "sloughing" around. Well, not that I "slough"...but I feel as if I do. I feel as if I don't have any "pressing" things...I'm never in a time crunch. I don't wear a watch anymore. Hmmm...I'm having trouble explaining this well.



As it's been, for the past two years, everyday, I shower...just not always at the same time. I get up sometime in the morning, but sometimes I return to bed if I don't feel well. I have been waiting for the "healing" process to finish. I was told that my brain suffered a major assault, and it would take time to heal. Well I'm tired of waiting...I think that the healing is over. This is what I've got to work with.



So, like everybody else, I'm going to try and be responsible. I'll get up at the same time everyday, eat and shower as if I have to leave the house (or go to my home office) for work...no languishing or lolly-gagging. Weather and wobbles permitting, I'll go for a walk with Jason in the morning. If it seems hot and/or muggy, I will hold off the walk until the evening.



What I do for the rest of the day is still up in the air. So far, two days in, a nap occurs from 1:00 o'clock on. Maybe I will set up a schedule like this:



Monday: sweep the floor(s)

Tuesday: dust

Wednesday: clean sink(s)

etc...



It's summer time, so I have to add flower pot maintenance to the household chores.



Yup, this is me trying to feel important...with a routine. Nothing to lose, lots to gain.



Emily

day one

I have almost completed the first day of my "routine".

I awoke. We walked. We shopped. I slept.

I got up this morning at 9:00 - beep, beep, beep, cried my alarm. I padded down the stairs in a bit of a fog. I had just slept for ten hours, and wanted more. But I pushed through, eating my cereal, feeding Nike...all the while wondering if I should go back to bed. I felt a slight wobble in my world.

When Jason got home from work, we went for a quick walk around the block. It was already getting hot out, and when we returned, I had worked up a sweat. I really despise my damaged thermostat. I am always hot - it's a bit of a joke around here.

Anyway, I'm not going to bore you with a play-by-play of my day. You just need to know that I napped from 1:30-3:30. And at 3:30, I curled up on the couch, and watched two hours of television. Then tonight, I dead-headed the flowers, watered the flowers, and watered the new sod. Right now, I'm tired. A normal tired, not fatigued.

It's two minutes to needle time...gotta go.

Emily

a temporary chink in my armour

I have finally completed my application for CPP disability benefits (Canada Pension Plan). As part of the contract with my long term disability "supplier", I have to apply for CPP. I began this process in early April. Part of me didn't want to apply because it feels as if I am conceding to the disease...or at least admitting that something awful took me down two years ago. I don't want to be part of an association between MS and an inability to work. That is not the face I want to give this disease. But...it is the reality, for me.

I have been unable to think clearly, constructively, continuously, and completely (heeheehee this post has been brought to you by the letter "C") when filling out the application. Unlike the "focus on your strengths" life mantra, the application focuses on what you can't do...your limitations.

So I called in Ladyfingers to help me. We have spent much of the past month analyzing and writing. Ladyfingers went through this process herself...more than once. The process has been like writing a sad memoir...I blurted out words and descriptions, and Ladyfingers made it all make sense.

Yesterday, I put the last thoughts to the keyboard. I had to describe my limitations regarding my personal needs. As I re-read what I had typed, I was hit with a wave of sadness...for myself. I realized that I have been living like this for two years, and I no longer think about the specifics. It was just the way I do things...it's how I deal with day to day life...I no longer do things like everyone else does. The whole application was full of sadness!

This is what I wrote:
Personal needs: I eat very slowly. Food gets stuck in my throat. Chewing also makes me tired. When I shower, I hold the wall to steady myself. When I get dressed, I guide my right leg into my pants. A couple of days a week, I lie down after my shower because I am fatigued and/or dizzy. I used to spend time after the shower styling my hair and/or putting on make-up, but I don’t do that anymore.

But somehow, I have gotten used to the way I do things. These adaptations to my life don't make me sad (or at least not persistently sad). Or at least not until I think about them.

Emily

looking for a routine

Earlier today, I had an idea for a post - and now it's gone.

Let me see if I can find it by typing some various thoughts...

I'm going to put myself on a schedule. Instead of getting up when I decide to get up, I am going to get up every morning at the same time...regardless of how I feel. I will get up, have my breakfast, have a shower, and by then, Jason will be home from his morning shift at work, and we will go for a walk. If I am not up to it following my shower, that's ok. If I need to go back to bed after my shower that's ok too. That is the schedule I'm going to start with...I have to start somewhere.

I finally settled on this decision because I am still grasping for what my "purpose" is. My newest diagnosis has created some bumps in my life...the "new reality" that I was just starting to get used to. Instead, it feels as if my life just got more complicated.

I mentioned before that I have been struggling with not being able to work, and not being a mother either...what am I if I am neither? I'm anxious to figure that out! I know...I know...it will just happen...but I do believe that we have some control.

If I have a routine, maybe I will feel more important. Not that I don't feel important...purposeful is more like it...a contributor...in control.

How is that for "various thoughts"?

Emily

not just me

For the past few days, I have had the wobbles in the morning. Sometimes, I go back to bed for a couple of hours, and everything is fine. I have also been taking two Bonamine tablets to settle things. The ENT doctor suggested these tablets instead of lorazapam. If I remember correctly (and I don't always), the active ingredient in Bonamine is meclizine.

The wobbles could be caused by a tossing-and-turning sleep. They could also be caused by stress...which could also cause the poor sleep.

Lately, I have been reminded that my troubles aren't just my own. Just because I can walk around in a, "again? really? more?", or "this is an unbelievable but manageable situation", and don't forget, "I'm ok. Well not ok, but ok" frame of mind, does not mean that those close to me are able to do the same thing. And then I become stressed when I see my loved ones stressed...

I'm going to cut it short right here, because you get the picture.

Emily

just a thought

If I am going to go through all of this crap...then damn it, I'm going to be inspiring!

Emily

P.S.
Thanks Lisa.

one way in which MS has changed my life

Here is an example of a way in which I have changed how I do things since I got sick...

*Jason and I often refer to past events in relation to "when I got sick". At some point, this is going to have to change, but I don't know how else to describe the event of two years ago (yes, this week marks the second anniversary of my attack). I feel as if "got sick" implies that I am still sick...and I'm not sure about that. I am definitely "changed"...but sick?

Ok, back to the original topic of this post...

I am somewhat of a perfectionist. I also have very definite likes and dislikes when it comes to design oriented elements regarding our home. We are currently adding some more "landscape" elements to our front yard...some needless to say, I have a vision.

But my physical and mental energy is limited. So instead of looking for the "perfect" element...just the right colour, just the right size...a perfect cover for the freshly soiled lawn...I settle for the best of what I have been able to view.

That's it. Instead of hunting through multiple garden nurseries, and searching bags and piles of mulch, I declared a "cease" action. I suggested to dude, that he can go and pick up the mulch that I saw at the first nursery (I only went to two, and only one of them had bulk mulch)...it would be fine.

*sigh*

Emily

today

This morning, I had my appointment with the hepatologist. I wasn't scheduled to see him again until December, but the my MS doctor is concerned with my liver enzymes. But the wonderful hepatologist says that everything is okay...no need to be yanked off the Rebif. And hey, I'm down a few pounds since I saw him last...exactly as he ordered.

*yes, I did say "wonderful hepatologist". I really mean that. He's quick and to the point, but also friendly and funny.

Yesterday, I received a call from my nurse at the Multiple Support Program (provided by the drug company). She calls me periodically to check on things. I mentioned that everything seems to be going well, except that every injection area has at least one red blotch on it. The blotches aren't tender to the touch, but when you can't inject in a red area, it limits how many places you can go. When she asked me how long they last, and I said about two weeks, she said that if they ever seem to not go away at all, I have to let my doctor know.

I do have one blotch that is a couple days over three weeks old. But it is finally starting to fade, so I'm not going to worry about it. It was from the first time that I ever injected the Rebif into my stomach. Annie, Jason, and I were at the Toronto Jays game on an injection day. I carried my needle in my purse, as well as a cotton ball, and my needle clipper (a handy little device that clips and stores the needle tip) and went into a bathroom stall when the time came. How is that for shoot-and-go?!

Shockingly, the Rogers Center did not have a needle disposal container in the washroom.

So - all good news. I can stay on my Rebif. I'm happy for that. It means that we are one step closer to some consistency in my life.

I hear the lunch bell ringing...

Emily

a bit further into the present

Up until tonight, I have been doing pretty good at letting others do "the work" around the house (even letting someone else get my breakfast ready for me). However, tonight, I cleared up most of the dinner dishes. Why, would I do such at thing, you must be wondering. Well, at some point today, I told myself that feeling tired, uncomfortable, and somewhat in pain has had it's day. I feel that I am taking too long to feel better.

I wiped off the kitchen counter, pressing my belly button into the edge of the counter...ouch. Then I decided to put away some papers that had been laying out since Thursday, and upon scanning them, noticed that I'm not supposed to do lifting or housework type duties for one week!

hehehe. oops.

I have spent some time since my procedure on Thursday, wondering if I should post about the results that I was given that day. I often remind myself that other than the odd post, the purpose of this blog is to make people aware of MS. Of course, this includes myself. And really, does anything happen to me these days that isn't somehow related to, or effected by MS? I don't think so. For myself, having MS means that it is always present, and has to be considered when making any kind of decision. It's kind of like my shadow (except that it doesn't go away in the dark).

One thing that I remember reading when I was surrounding myself with tons of MS information, was that just because you have MS, doesn't mean that you won't get any other diseases. And along that same line, don't just assume that if you have a problem, it must be the MS.

So when I began to seriously notice painful feelings in my abdomen, in particular my bladder, I made the mistake of assuming that it was the MS...my brain sending mixed up signals to my bladder. Was I ever WRONG!

I found out on Thursday that I have what is considered, stage four endometriosis. Stage four is the classification given to the most "serious" level of endometriosis. My bladder and uterus have fused together, thanks to the amount of endometrial cell growth. This means that more surgery is in my near future - non-elective surgery, and more stressful than what I just had.

Endometriosis is one of the two major causes of infertility (I just happen to have both!). After coming to grips with having to put children on hold because of my MS (which only happened after three years of trying to get pregnant), I am again forced to think about my reproductive possibilities. Why can't I just deal with one problem at a time?

An even better question is: am I really dealing with all of my seemingly unfortunate realities? I'm not sure.

That's all for now,

Emily

hi

I'm just stopping by for a quick note. I survived my procedure - as far as I am concerned, the stress of it has not had an impact on my MS symptoms. I also awoke with all of my abilities! Thursday ended up being a long day, as the laproscopy showed some things of concern to my doctor, and he arranged another procedure for me, on the same day.

I'm having trouble with words right now...I know what I want to say, but I can't seem to transfer the thoughts to the keyboard. I have pushed myself harder than I should have for the past two days. I never want to miss anything, and I like to have a least one hand on the steering wheel (so to speak).

So, I'll try to come back here soon...when I feel that I can make more sense.

Emily

what's going on

Here I am - back home, and maybe I can get back to posting.

Or maybe not yet. Tomorrow, I'm having day surgery...and the word is I may be uncomfortable for a couple of days after. Also, there is a chance that my MS symptoms may flare up. Apparently, people with MS should consider whether or not elective surgery is necessary. I'm assuming a flare up would be a result of stress.

I am not really afraid of a flare up of symptoms. What I am afraid of is that my abilities might be altered following general anesthetic. I met with the anesthetist yesterday, and he assured me that the risk of this was small (less than 3%), and that there are no other precautions we could take to decrease this risk even more.

In other news...

My liver enzymes keep climbing - so my MS doctor is sending me back to the hepatologist. That appointment is next week...instead of the scheduled follow-up for December.

Let's skip to some better news...

Ladyfingers and Dude are in town! They arrived last night, and have settled in nicely. Flowers, yard work...'tis the season!

Well this is all that I have for now. I hope that is sun is shining where you are!

Emily