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