Something is going on in my body
What comes before a conclusion...
My Rebif injections were awful last week. burning injections. post-injection pain. 2:00 am ibuprofen swallowings. and on Friday - 2 hours following, and 6 hours following...chills. yes, chills, totally new for me.
Jason and I didn't put 2 and 2 together until Friday, after I had finished cringing and "ouching" at my Rebif injection. Jason was doing the injection in my right thigh, and all I wanted to do was get away from the needle...push him away, or jerk my leg away. But of course, doing something like that would cause this highly acidic liquid to leak onto the outside of my body...potentially causing MORE pain. So I waited until it was done, and then I pounded my fists into the couch.
It is possible to have "worsened" MS symptoms when you are sick, or your body temperature goes up. Also, being sick, or being in a relapse can make the drug injections more painful.
Tonight, we'll see what happens.
I just finished designing and assembling a beaded necklace, and I put every last bead container away. I don't do much beading these days because I don't have the concentration required (or the concentration I think that I require) to imagine the finished piece. But when I do, it is pretty much a start to finish job.
I thought that I was avoiding "messes" because I was afraid I wouldn't have the energy to clean it up, or finish the project in one sitting. I have always disliked clutter, as well as having anything out of place in the main part of the house.
In order to stay on top of "clutter", I putter around putting things away. One sure sign of me having an off day, is the lack of puttering that I exhibit. "Puttering" requires walking around, the number one thing that I can't do if I'm wobbly. There isn't order or a systematic nature to my puttering...hence, puttering.
Today, a relatively good day (except for a slightly annoying headache) I put a different spin on the reason behind my lack of projects. Keeping the house tidy is something that I can control...for the most part. Some days, it is out of my control. So if I avoid creating situations that at some point require tidying, I am always in control.
If I continue to spend every day in my safe and tidy bubble...I will go crazy. I'll be in control, but I will be certifiable.
Feeling a bit obsessive,
The subject of the Museum and the Forks in general is one where I don't know all of the history, but I do know that the location has been ripe for scrutiny. The site is known to have been a stomping ground for centuries of peoples, including aboriginal camping, fur trade, waves of immigration and construction of the railroad.
Also of note is that archaeologists are "excavating"the basement ... not bulldozers. Archaeologists have unearthed thousands of artifacts, including arrowheads and pottery. And now, a footprint has been unearthed. The impression is believed to be approximately 800 years old, and was found 2 metres under the surface.
I'm not intending for this to be a "news" article. But when I read that a "footprint" had been preserved in the earth for hundreds of years I had a thought. It isn't a new thought at all. But the potential irony of the situation hit me.
We are building a Museum for Human Rights, a place where we hope to train Canadians "...who are empowered to guard human rights and freedoms such as police forces and peacekeepers working overseas" on grounds, where people who have historically (and still) endured unjust and unfair treatment, walked and lived.
So what are we doing for a Museum for Human Rights?
Are we pushing them around (and out) one more time?
Are we providing sufficient memorial to their struggle?
Are we greater people for having unearthed the past?
Are we disturbing sacred ground for our own purpose?
Is it Right?
The quotations in this post, regrading the vision and purpose of the Museum, were taken from the official website for the Canadian Museum for Human Rights
You can google "winnipeg footprint discovered" to find international articles on the 800 year old find.
"Are you still holding out for that?" he asked me.
ADEM (Acute Disseminated Encephalomyelitis) was the original diagnosis of my illness. It wasn't until an MRI eight months later showing new lesions, that things changed to MS (despite the possibility of recurrent ADEM). Through my internet searches, I have learned that recurrent ADEM should be treated as "special case MS". Or something like that...don't quote me.
The point is, I guess that I do still hold-out for some magical moment when I will be told that I never had MS. But I'm not sure why I hold onto this dream. My life wouldn't be any different than it is now. MS or ADEM, the treatment is the same in a recurrent case. My brain wouldn't heal any differently.
I would still be taking disease modifying drugs. I would still be tired and fatigued. I would still have all the same residual symptoms. I would still have this numbness on the front of my right ribs, that when I lay down and breathe, it feels like someone is tickling me.
Whichever disease it is, I consider myself lucky to not have had to battle come-and-go symptoms prior to the diagnosis. There are a lot of stories about how people came to be diagnosed with MS. In some cases, years of puzzling symptoms either went unchecked, or wrongly diagnosed.
So why do I hold onto this dream? I know what you're thinking...because I don't want to have an unpredictable, potentially debilitating, progressive disease. But I don't think that way. I don't sit here wallowing in thoughts of what might happen to me.
I read the ADEM discussion forum, because my experience has been most like the experiences I see there. When I do come across someone sharing pieces of their MS experience that are similar to mine...I am overwhelmed...I've been known to cry. But they seem to be so few and far between.
Now in "real life", life outside these four walls, I have MS. I'm not afraid or ashamed to say it. I live with MS. I try to keep up on the latest drug info and trials. I want to raise awareness. But every once in awhile, I find myself peeking behind the other curtain.
Which brings me to another bit...
Jason and I were out for dinner with some friends the other night. Our server was someone who a few of us had worked with at the BB. So as you do with old acquaintances, she asked what we are all doing now...
I answered, "I'm on long term disability".
For the first time, that came out of my mouth instead of, "Nothing".
Either answer is awkward.
Next time, I might try, "I'm taking a break". Or, "I'm in between careers". Or better yet, I'll take a note from the Seinfeld television series. In one episode, George pretends to be an architect (no wait, he tried this in more than one episode), a career he wishes that he had. When asked if he designed any famous buildings, George responds that he built the Guggenheim...
I may be way off on the specifics, but you get what I'm saying...
So when someone says to me, "What are you doing these days?", I will respond,
"I invented Youtube."
"Are you familiar with Citibank commercials, What's in your wallet? I wrote that"
"I wrote the new Hockey Night in Canada theme song."
"Sometimes you're the windshield, sometimes you're the bug."
I envy the seemingly endless amount of energy that my backyard neighbour has. Maybe that hot pink thong has a hidden power pack in it. And her husband...he's just a lump. I haven't posted anything about them in some time, but what I just saw warrants an update.
Keep the following in mind, my family room window (seven feet wide by five feet high) is less than thirty feet away from the start of their backyard. And our window is over five feet off of the ground. I don't spy...they just happen to be standing on their deck, or sitting in their kitchen when I see them. Even when they stand on their lower deck, I can see them. We are in a new development, so while there is a fence between us, there aren't any mature trees.
Last night, there was a man on their deck wearing a tool belt. After three and half years, and watching the stepford wife do EVERYTHING while her lump watches, this was an odd site. Jason caught a glimpse of a volt tester, and deduced that this man may be an electrician. From what we have seen them do in their yard...they need professionals. The most recent was putting poly (clear plastic sheeting) down on their yard, and covering it with stones.
Only now, am I thankful for the electrician last night. Because today, I saw the lump in a bathing suit, climbing into a brand spankin' new hot tub on his lower deck. I'm worried that I might be exposed to a hot pink bikini, or something even worse...
Do you think that he knows you shouldn't get a stepford wife wet?
I woke up today...and felt awake! And today is a PID day!
After multiple days of fatigue, some wobbles, and boohoos...I accomplished a lot today.
* verb boohoo
1. feeling sorry for myself
origin 2008 in my head
I discovered that these long strings of "off" days can take an emotional toll on me. I don't believe that I am typically one to boohoo, but I sure felt that way on Sunday. I slept for a better part of the day.
And then what a change for today! During my self-imposed nap, I couldn't stop thinking about all of the things that I wanted to do: weed the yard; dead-head the flowers; design a t-shirt for Jason's curling team; bead; clean the fruit we bought this morning; clean the bathtub...
Oh yeah...I should tell you that I'm not setting my alarm clock anymore. I decided that obviously, I NEED the sleep that I am getting. I have mentally connected my string of bad days with my alarm clock. If you need to speak with me, don't bother calling until after 10am.
Now that you know that, I should tell you that my alarm went off this morning. I guess that I set it last night when I went to bed...or set it while I was sleeping. Either way, it was kind of funny. What was even more funny is that I was already awake when it went off. HAHA.
Now if you will excuse me, I am going to make some gravy to go with dinner...
I didn't want to take any amantidine today. I felt good this morning. Today, was the first day in a string of days that I got out of bed after just one snooze on my alarm clock. I was groovin' along really well this morning, and then I suddenly found myself at the bottom of a big hill, glassy eyed and yawny...so I decided to take one pill for the day. It's turning out to be an okay day...not a lot of energy, but not totally zonked either.
But here is the thing...
You know how I started setting my alarm for 9 am, and was going to get up no matter what. I would eat and shower, and then decide the course of my day from there. Well, I have been having a lot of difficulty getting out of bed in the morning. I hit the snooze button an average of three times per morning.
I'm telling you all of this now, because I just found myself rejoicing in the fact that today is Friday! I don't have to set my alarm tomorrow morning...week-ends are free! yippeeee!
Nobody makes me get up but myself...is this alarm business really doing me any good?
After some quiet minutes, sprawled on the couch, I decided that I would do exactly what I intended to do from the beginning...ride the wave...as far as I could.
But in the situation that I am in, it is very difficult to take things one step at a time. The future is always a consideration. So I will consider the future if and when I am offered a position. At this point, I intend to ride the wave until that point. I decided that the whole process is a growing and learning experience. I could go through an interview and see how comfortable I really am with my situation. What a great way to experience the first interview in my new reality: familiar territory, familiar topic, no real pressure. I may thank myself for this someday.
In the meantime, I will try to keep my concerns, what-ifs, and excitement down to a dull roar. Last night, as I tried to fall asleep, I thought the following:
An employer is going to hire the best person for the job...someone with the ability to do the job. I have the ability. Why am I so focused on my daily challenges, and not focusing on my abilities? That darn CPP application was all about challenges, but for any employer, and myself, we would only focus on my abilities. A prospective employer won't ask me why I can't do a job. So I'm going to focus on my abilities, and my ability to do my dream job. But wait, is that where the situation gets cloudy and confusing...I may have the ability to do the job, but do I have the ability to work? Is there a difference?
Regardless of that revelation, I returned the phone call to the BB representative, and found myself smack in the middle of a telephone interview. The next thing I knew, I was answering questions about salary expectations, 3 strengths I would bring to the position, and my personal goals...and of course, why I left BB in the first place.
And, I have moved on to the next round. Following the interview, I was told that someone else will be calling me later today or Monday to schedule a structured interview in person, on either July 23 or July 24.
I don't think that I have written the final post on this subject...
I just got in from watering the flowers, and there was a phone message...from BB...regarding the resume that I submitted...am I still interested...please phone back.
The previous post to this took me just under an hour to type. I hesitated to share that story here for over a week...and then *BOOM*, I share, they phone.
However, over two months ago, I still had a wish that maybe I could return to some form of employment. So when I read that my dream job was available, I got very excited. But after excitement, comes a dose of reality, and I wrestled with the two for some time.
To best understand this story, you should know a bit of my history. For five and a half years (up until August 2005), I worked for a big box store. From here on in, I will refer to it as BB. I worked in a specialized role, so specialized, that for years, not every store had an equivalent position. I took the basic role, and customized it to be a successful selling venture. I had an enormous amount of freedom: freedom to help define the role; freedom to learn what I wanted; freedom to spend my time both where and how I wanted.
So when I left the BB, phone calls were made, and offers came to me with the hopes of keeping me in some capacity. I expressed that I was leaving because I needed a new challenge, but, I would consider returning if "insert dream job title here" would ever become available.
So let's roll ahead to April of this year...
I decided to apply for the dream job. Around the same time, I am aware that under the rules of my long-term disability contract, I have to apply for CPP. The thoughts behind applying for my dream job were simple:
If I didn't at least apply, I would always regret it.
Considering an almost two year gap in my employment, I was prepared to answer questions honestly...and focus on my abilities, as opposed to my weak areas.
I also made a rule for myself, regarding the application:
Don't sweat it.
If I don't receive a phone call, it's because I didn't put the right key words in my resume. The application process is done on-line. I have heard that the applications get run through computer software looking for particular words, and this is what makes a resume stand out.
And besides, I wasn't sure if it was something that I could do anyway. I just wanted to follow the process, ride the wave. If after being honest, I had to make a decision, then I would do so. I felt that I was in the driver's seat.
A few days later, the opportunity presented itself to speak with a BB store manager, who knows me and my work. She was thrilled to hear that I had applied for the position and wanted to figure out exactly how the process worked so that she could get a word in for me. This manager did put in a glowing word for, as did a personal friend who is in a district position with the same BB.
It is now coming close to three months later, and I haven't heard anything regarding the position. I believe now, more than I did then, that I am not able to consistently perform in my dream job, or any other job for that matter.
This would be a good place to end the story. And maybe I am close to an end, and if it wasn't for that personal friend who works for the BB, I might be there. I don't think that my friend knew the consequence of what he told me. He has routinely asked me if I have heard anything about the job, and this last time, when I said no, he had more to say. Apparently, word spread that I had applied for the dream job. A number of people that I worked with and for are employed in high level management with the BB. I was their star. Somehow, word also spread that I live with MS. I don't know which came first, knowledge of the application or knowledge of the disease, but both were used in the same conversation, and my ability to perform the job was questioned.
I no longer feel as if I am in the drivers seat. I didn't get to make my own decision. Is it a moot point because I wouldn't take the job now anyway? I wanted the opportunity to discuss with the BB if I could do the job to both of our satisfactions. I am qualified. I am experienced. My references speak for themselves. How did I not get an interview? It's beyond key words in resumes.
In conversation and in my mind, I tend to take this subject deeper. For instance, would I be more upset if I got an interview, and didn't get offered the job? What looks better for them, to not interview me at all, or to interview me and not hire me? Maybe they haven't gotten to interviews yet...
I am increasingly putting more emphasis on what is best for me, and what is best for Jason. Don't sweat the small stuff. Get rid of mental clutter. Don't take things personally. Relax. Enjoy the good days. I know that working is not best. However, I still want to make my own decisions!
One particular letter to the editor from yesterday stands out in my head...no wait...two of them do. One woman had the audacity to suggest that Handicapped parking is only necessary in front of pharmacies and doctors offices. If a person who requires a handicap pass is able to "peruse" the aisles of Wal-Mart, then said person does not need to park in a designated handicapped parking space.
Another letter was from a woman who is eight months pregnant, and has two small children. In Winnipeg, as I'm sure is the growing case in many major cities, families with small children, and expectant mothers share the "privilege" of priority parking close to the store doors (permit required) in designated pink parking stalls. This particular mother is upset by cars with handicapped passes parking in pink stalls! Her argument is based on the school yard philosophy of "you can't have mine if I can't have yours".
"I am assuming that the handicapped spots are taken, so those with these permits feel that they can park in the mother/expectant parking. I find it completely frustrating as I end up parking at the end of a very full parking lot with two young children."
***I am writing this with absolutely no embellishments. I have not written this with editing designed to entertain you...people actually think like this...and have the guts to go public!***
Wow. So instead of focusing on the misuse of the blue stalls, and blue permits, these people have zoned in on the "necessity" of the spots in general, and want to share their parking woes as an able-bodied person! They have made it personal.
I found it discouraging that a disability is often still considered to be a "physical" impairment (as the writer pointed out in a number of situations, the driver and passengers appeared to be able-bodied...so therefore must be abusing the permit). One reader suggested that only individuals with wheelchairs and walkers should be given permits. Is she suggesting a Disability hierarchy?
I don't doubt that permits and stalls are abused. Like so many other things, society continues to push the boundaries; rules are for everyone else. We squeeze through that extra car on a turning arrow; we have 16 items in the express check-out instead of 12. I'm not surprised that blue stalls are misused.
As a "periodic" user of Rockstar parking, I am scowled at and likely whispered about. I don't consider handicapped parking to be a "perk". I don't think that it is my "right" to park in the spot closest to the door. But I appreciate the opportunity to make my trips out in the shopping world a little easier, and a little safer.
And I'm sure that the mom of two plus one on the way appreciates the opportunity to make her trips a little easier, and a little safer.
But don't we all want that?
I wonder what the woman who feels that handicapped spaces are for pharmacies and doctors offices thinks about the pink stalls.
Jason and I left yesterday's appointment with the MS doctor feeling quite satisfied. We were the last patient of the day, and there weren't any other doctor's there with patients either. Dr. Not-So-Nice was thorough, attentive, generous with time, and patient. In my three previous visits with him, I don't think that I have used any of those words upon leaving.
Although he remains concerned about my liver enzymes, his mind was "put at ease" by the hepatologist. My enzymes fluctuate. I will continue to go for monthly blood tests, and keep taking my 22 mcg dose of Rebif (as opposed to bumping it up to 44mcg).
Dr. Not-So-Bad had a check-list of questions to ask me, and when he finished his list, he asked me if I had any questions. Since fatigue was not touched upon, I asked him if there was anything to help me through the rough fatigue days. I can accept that I can have two or three stellar days, and then maybe have two exhausted days, but when the exhaustion lasts for three or four, I get upset.
Fatigue is one of the more difficult things to treat. When I suggested that maybe I should be more disciplined on my stellar days, he said that unfortunately, fatigue is not predictable. Maybe having a nap everyday, despite how I feel, will help, but ultimately, MS does not play by any set rules. He has given me a drug to try as needed (amantadine) as he also seems to respect my desire to stay off daily medications as long as I can.
Throughout the course of our appointment, he did say a lot of "We don't know"s. However, he said it with a saddened certainty...a tone that I respected. It is as if he understands my concerns, and they are concerns that he shares with me...with neither of us holding the solutions.
So I don't need to see him again for another year. No MRI's. Maybe more swallowing follow-up...but it finally feels as if we can just ride the ride.
Translation: we've had you on a drug that we know can have serious consequences to your body, but somehow, we also believe that it has benefits to patients with Relapsing/Remitting Multiple Sclerosis, but we don't know why it works...and we want to make sure that everything is okay.
Oh yeah, and we're seeing you five months after you started it. I really shouldn't care about that part of it. I mean, their testing my blood frequently enough!
I really don't know what to expect tomorrow. It's the first time that I have seen a doctor regarding my condition, that I don't have a lot of questions. I hope that I get an opportunity to mention my fatigue...and that's about it. They will surely see the red marks on all of the injection sites, but I don't know what they will think of them. I have one on my stomach that has been there since May 30!
I promise to keep you posted!
Yesterday, the same inner voice pushed me to get out of bed. Even though my body and my brain said, "stay in bed, we need it", the "other" voice said, "Alarm went, going to Costco this morning...time to get up".
Who am I kidding, it isn't simply the "other" voice, it's the "evil" voice! It doesn't yell, it doesn't whisper. It doesn't call me names and it doesn't compliment me either. But it tugs at my responsibility strings. And the responsibility strings are connected to the guilt strings. These aren't strings that make beautiful music!
My point is, I should have listened to my brain...and not the voice. The wobbles came on fierce in Costco. I could no longer turn my head to look around, or watch for carts coming my direction. I use my own cart to protect my "personal space". It seems when people get too close, things get worse for me. If I think about it now, I may even start to panic. I'll have to think about this aspect some more. I definitely get quiet and tense.
So today, I am wiped. And I was wiped for the remainder of yesterday. Come to think of it, I was wiped on Thursday afternoon too! And the evil little voice just keeps playing bad music!
A few posts back, when I discussed my CPP Disability application, I mentioned that certain things have just become second nature to me (like guiding my leg into my pants, or holding on to the bathroom wall). So if I were to expand my thinking on this idea, I guess that I have made a number of other adjustments in my life, in order to get through the day...one day at a time. I'm not going to try and figure out what they are, but I imagine they involve body positioning, head movements and task selection.
So today, when my "wobbles" were activated while I was sitting by myself at the kitchen table, I was taken aback! I spent a very short amount of time sorting out papers from the junk drawer (remember, one of 3 junk drawers). I decided to use page protectors to organize and separate pizza flyers, coupons, restaurant menus...so I was dividing a big pile into multiple little piles. This involves a shifting of the eyes, a subtle turning of my head, moving my hand one direction while looking the opposite direction ... as Jason says...it was just enough to remind me that I am disabled.
In my mind, it reminded me that I am where I need to be. When I start to think, "well maybe I can get some kind of job...", I will remember that I can't sort papers.
P.S. As I'm typing this, I now remember walking the aisle of the video store the other day...I suddenly needed Jason by my side. I had been walking forward, with my head turned to the left...I KNOW BETTER THAN THAT! It was obviously a moment when I let my subconscious guard down!
Canada Flag at the Forks
I am a proud Canadian. I can't imagine being a citizen of any other country. I love mountains, prairies, glaciers, tundra, historic centrals, fishing villages, and lighthouses. I love the people that we are, and the people that we were. I love democracy, options, the democracy of options, and options that are democratic. We are more than just Tim Hortons and universal health care!
I spent my Canada Day afternoon on a boat - cruising the Red River. I ate a tasty dinner at the Forks (National Historic Site).
This boat goes fast!