Sunday

I have so much to say today...

First of all, Sunday's walk was excellent! Here is the "unofficial" team photo (we were missing two people at this point)

The sun was shining, the sky was blue...and the wind was extra crisp!

can we co-exist?

I haven't had the greatest 24 hours. I'm having to deal with a return of my "breathing problem". I don't think that I have ever discussed it in great detail here, because it hasn't been much of a problem since I started blogging. Sometimes, it shows up at bedtime, or when I am super fatigued. For the past 24 hours, it has been with me the whole time.

If feels as if someone is standing on my chest. This makes it hard to get a full breath of air, and I find myself having to take in a lot of deep breaths. Back in the fall (I think), I had some lung function tests, and saw a respiratory doctor. My MS doctor referred me to this specialist, suspecting that it was the MS causing my difficulties, but he wanted to make sure. Sure enough, my lungs are fine - no other medical reasons for my struggle and discomfort - just MS.

This scares the socks off of me. Last night, for the first time in a long time, I cried for myself. Is it really necessary for this stupid disease to steal my oxygen? Breathing, is an important function. Come on. I don't want this disease.

Sometimes, it's hard to stop myself from imagining what this disease will take from me. I don't think about it often, but I believe that if I am aware of the possibilities on some level, things will be easier to handle, should physical adaptations be necessary. So when I am forced to pull in a deep breath, I don't like where my imagination goes.

Just as frustrating, is the fact that I have had a really stellar week! Other than sleeping away Tuesday, I was busy this week...and ventured out on my own on two different occasions! I was not afraid! I made banana muffins! I did laundry! I raked the front lawn!

Oh...isn't that interesting. I did things like a "normal", healthy person, and got swatted down as if I had snatched a fresh baked peanut butter cookie off the cooling rack! What happened to the wobbles? Aren't they supposed to be my "reality check"?

I tried to trick my body. I thought that I could just keep taking the cookies. I was getting along really well with MS. But rather the trick was on me. I think that all along, MS knew that it was going to swat me. It was just waiting for me to feel good...normal.

So now I'm going to bed, and as per usual, I believe that tomorrow will be better.

Emily

where is the wind?

Today is a post injection day (PID), and a PID without Tylenol.

I don't know if I ever mentioned that I refer to my PID discomfort on a mild-moderate-severe scale. When I woke up this morning, at 8:30, I confidently used the word mild. I got out my breakfast (mmm, mini-wheats), as well as an Advil, sat down at the table and talked with Jason while I ate.

After breakfast, I crawled back into bed. I didn't need to go back to bed (meaning that I wasn't too uncomfortable or tired), it just felt good at that moment. Well, it's now 1:50, and I just got out of bed.

Where is the wind for my sails?

Emily

opportunities

I'm sure that what I am about to type holds true for many events, for lots of people. But the key is to recognize it...and then to use it.

I was just working in the kitchen (unloading the dishwasher) and trying to mentally and emotionally digest something that I had just stumbled upon. With two clicks of my computer mouse, I revealed a job posting...not just any job, but the job that I once coveted. Now what?! I realized not just three weeks ago, that I'm not able to work!

And then my thoughts shifted to opportunities. Having a chronic disease, which for me is Multiple Sclerosis, presents me with lots of new opportunities. It's kind of like an excuse, or even a new reason to do or try something different.

I could meet new people or maybe sample new foods as part of an MS friendly diet. I could share my experiences to help someone who is newly struggling with a diagnosis like mine, or even educate someone who just wants to know more. I could investigate new ideologies, emotions, and responses.

Oh my.

Why am I having this "opportunity awakening" within minutes of a "career opportunity discovery". Is it to remind me, and re-focus me on "there are things to do with your life that are just as fantastic as a forty hour a week paying job"? Or is it to tell me that "new opportunities can be found in this new job if you promise to use all of your new-found personal skills"?

AAAAHHHHHHHHH!!!!!!

Emily

injections

I thought that it was time to share an update on my injections.

I would say, that for the most part, everything is going well. The injection itself remains painless for the most part (there is a bit of a sting) and we haven't forgotten any. As for the post reaction, it to is going well if I think about what it could be.

I do wake up early (4 or 5 am) with achiness all over, but tylenol helps a lot. I find that I am particularly tired and slower on the mornings following an injection...and sometimes it can last for the entire day. I also have some strange bruise looking blotches in a couple of my injection sites. They are skin discolourations ... no accompanying lump or tenderness.

As for what I can't see or feel, my liver enzymes remain elevated (and I assume are elevating). Even though I am following my blood test schedule, as it was arranged before I started the Rebif, the clinic keeps sending me more requisitions! So sometimes I make an unscheduled trip, and sometimes I don't. I have left a message for the nurse to call me so that we can hopefully arrange a new routine.

Speaking of blood tests, today is an unscheduled day...and I got a requisition in the mail yesterday...so today, I will go.

Now.

Emily

what a wonderful day

I am feeling good today - and I took full advantage of it. The key now, is to STOP. I need to pace myself when I am doing well, because I never know what tomorrow (or one hour from now) will bring.

I rolled out of bed this morning at nine o'clock, and I knew as soon as my feet hit the floor, that I was feeling good. Knowing that Jason is off work tomorrow, and we have some errands to do, I thought that if I was to complete some of the errands today...

So I did. I evaluated what I could do and should do and set up some "rules" for myself:

1. use your rockstar parking permit
2. don't go further than KP
3. only get from the mall what you went for - NO WINDOW SHOPPING
4. if before you leave the house you feel the slightest bit off - DON'T GO
5. take your cell phone
6. don't rush
7. accept that if you are tired, wobbly, achy, or any combination of those later...THAT'S OK.

I did it! I even stopped at Safeway on the way home to check out how far in advance I would need to order cupcakes for a get together.

Yesterday, Tuesday, not so good. I was achy, nauseas, fuzzy headed, and tired. Today, Wednesday...clear head, clear stomach, with a mild amount of pep in my step.

So now, I will rest.

Emily

I need another tissue

The previous post to this, has a comment that has made me cry - again. Annie (my sister Andrea) wrote about her experience at the Supercities Walk for MS, which she completed yesterday.

I think that I am emotional because she got blindsided by the big reality that is Multiple Sclerosis. Sometimes, you can see the various levels of physical challenges that the myelin destruction causes and sometimes you can't. And at least once a year you can see the social impact that the disease has. The walk can stir up a whole mix of untold emotions inside you!

Once again, I have been reminded of how my disease can upset people that I don't want to be upset! I wish that we could have walked together. Or maybe that would have made the reality even bigger...which may not have been good.

I'm really struggling to get the words out right now.

I know that I am going to be met with this same emotional heavy bag in less than two weeks. I have a feeling that even if I am prepared for it this year, it will still be heavy. My own "social impact" has grown over the past year, which is evident in the size of Em's Slackers and it's honourary members.

Emily

just so you know

Today - maybe even right now...there are unofficial members of Em's Slackers pounding the pavement! Today is the first day for the Supercities Walk for MS in various parts of the country! Lisa in Leamington, and Andrea in K/W ... woohoo!

The reason that they are "unofficial" is that Em's Slackers is a Winnipeg team...I think that I should request cross-country representation for next year!

Putting the Em in Em's Slackers,

Emily

MS walk

I am still feeling okay about my realization that I simply can't return to work. Although, the past couple of days have been been plagued by morning wobbles, and afternoon yawns.

I am getting geared up for the Supercities Walk for MS. Em's Slackers, our team of walkers, has grown to consist of 16 people! Jason and I never imagined a turn-out like that. Myself, I will walk the 4 km route. That will be four kilometers more than last year!

I am even more geared up to get the team hats and t-shirts that I have selected for Em's Slackers! In an effort to put a bit of "Em" into the gear, there are three colours of shirts, with bright green printing on them. The common motif to the shirt fronts, backs and hats is a star. And what colours are the shirts, you ask...navy, classic pink, and chocolate! I am pumped! The hats are all navy - with a bright green star.

Jason and I would like to have our team back here later the same day for a BBQ. hmmm...I might have to colour code the dessert!

Emily

my comment

I am writing this post because of the comment that I just moderated...the comment made by Ladyfingers...my mom. Her comment made me cry. I'm crying the kind of tears that happen when you feel the support of someone you love. The tears that are telling me, "See Em, it's ok". The tears that say, "Boy, has your mom ever suffered through this too".

For the past 15 months, absolutely no one has pressured me to do anything. No one has made suggestions, or hinted to me at all, as to what they think I should be doing. No wait, that clinic nurse has...but she doesn't count. Sometimes, I have wanted someone to just tell me what to do, once and for all. I have wanted a medical expert to set it all out for me.

So after coming to the realization that my life has changed, and feeling definite about it, I became scared by what I perceived would be the reaction to my decision. Comments like, "But you didn't try", and "What are you going to do with yourself. You can't just sit around and watch tv all day", have disturbed me. So when I see that in fact I'm supported, I find myself a bit overwhelmed...but I have no reason to be. It's all just me, torturing myself...and I have been doing it all along. The support has always been right under my nose.

I recognize that this is the decision that I have to make now. But who's to say what will happen a year from now, or five years from now. Wait a minute, it hasn't really been a decision. It is more the acceptance of my new situation. If it is at all a decision, the decision is to stop trying to figure out a way to go to work. READ THE WRITING ON THE WALL. It isn't bad. Isn't acceptance one of the stages of grief?

Emily

realization

I think that I finally get it. While others may have "gotten" it a long time ago, I now get it. Instead of napping, I found myself laying in bed, composing this blog entry. I kicked off my nap with the thought, "What would Dr. Schmidt say?" The question being, "Did you know that I wouldn't be able to work again".

This question has plagued me for months. I have bounced around from walking straight back into the job I left behind, to starting a new job., and everything in between. I have tried to convince myself that I am now better able to handle stress than I was before, and that I would no longer take on any job with my full being. I have considered working part time, and tried to re-work the job that I left behind to better suit my abilities.

But I continue to find myself empty handed. After more thought, my latest and greatest scheme deflates right before my eyes. And now I realize that the reason for that is because "nothing" is the most realistic. As I have said from the beginning of this, I wish that I had a more visible disability. Instead, I get fatigued, I have trouble breathing, and I have trouble swallowing food. I have trouble making decisions, and making plans. And all of this gets worse when I am tired or stressed.

On Friday (or was it Thursday?) the wobbles peeked out from under the glowing haze of steadiness that I have been enjoying for weeks. This has totally pissed me off, but has also made me realize that "wobbles" are just going to be a part of my life. Take every minute as it comes.

So I am going to try to accept that I will not return to the work force. This has been a difficult thing for me to do so far, because I got sick just when things were taking off for me. I was in a place where my name was known to suppliers, my eye was something for my employer to trust and invest in, and word of my talent for creating individual and stylish spaces was spreading.

I'm not going to say that I feel "robbed". I've just been directed down a different path. I am no longer able to steadily earn a livable wage, but I am still talented. My plan (and hope) is that I can continue to nurture my talents and passions, and then share them in an unofficial arena.

I have always known that this disease would not get the best of me. Unfortunately, I have assumed that I would have to make money despite the disease. But that isn't what this is about. I have to respect the disease: acknowledge that it's there, as well as the limits that it has given me. I also have to respect not only the advice that I have been given on how to best keep the disease symptoms at a dull roar, but I have to respect my body, including my abilities. Abilities are not abilities just because they bring home loonies.

And what do I imagine that Dr Schmidt would say? He would say, "Emily, given the scope of the attack on your brain, we are surprised that you don't have more problems. What you are able to do is beyond our expectations, and no, I don't expect you to be able to work."

I hope that I don't deflate this one!

Emily

what kind of news is this?

In yesterday's mail, was an envelope from the neurology clinic at the HSC. Inside the envelope, was a note, and a requisition for blood work...REPEAT blood work. My MS doctor would like a repeat of the blood work done on March 14. Hmmm...

The testing on March 14 was week four of my weekly tests, and included more complete testing than the previous weeks. I am not due for the complete blood count for another week (or four weeks after March 14). I was just at the lab on Monday for a scheduled "mini" draw of blood, and I had to return again today!

Emily

optimal outcome

I feel like skipping two weeks of news and happenings, to share a big moment with you.

I am finally in a place with my injections where I can "shoot-and-go". On Monday night, I went to watch Jason and his curling team. Knowing that my needle is scheduled for 9 p.m., and it was the beginning of the week (thus setting the timing of the injection for the rest of the week) I decided to take the needle with me...and have Corina shoot me.

No icing. No tears. No heat. No post exposure to the air. Other than some jitters by Corina, it went off without a hitch. I'm not sure if the woman who entered the washroom just as we were setting up minded, but I'm not concerned.

So you might be wondering why I just didn't wait until I got home. Or skip a day. As I see it, I need to set good habits now. That means having each injection no sooner than 48 hours after the previous one. It also means living my life, and going out, even if it is a Monday, Wednesday or Friday. I have read blogs written by individuals who skip injections, and I have seen the figures of the number of people who stop treatment because they don't think that it's working. For myself, I'm going for the optimal outcome...which takes discipline.

Last night, after my injection, I thought back to the daily Copaxone injections. I don't know how I did that routinely for so long. I remember the production...*shudder*

And one more thing, I will be able to give myself injections if I find myself alone. As my stomach is not part of the cycle, I can always go there when necessary. But I would like to try it one day at home, just to make sure that it goes smooth (some places sting more than others).

I'll post again soon,

Emily

P.S. After Jason's game on Monday, I got on the ice to "throw some rocks". I borrowed some shoes and a broom...but there weren't any knee pads available! It was my first time ever on the ice. As a reminder, I have a 3" diameter bruise smack in the middle of my right knee (and a smaller one on my left knee). I also did some sweeping...which was much easier with two grippers on!

I saved the sweeping until the end - admittedly, it did throw my "centered-ness" off a bit. But the following day, I only suffered from the usual post injection discomfort.

my return

ok, ok...I'm back!

I didn't have an opporunity to warn you of my AFK (away from keyboard) -ness.

Ugh - I'm too tired to think right now...

Time for a nap...

Emily