Trapped

I have been really, really trying to do things that will result in me getting a life for the past week or so. It's frustrating, because sometimes I am genuinely tired, but a lot of the time I've just convinced myself that I am tired so I can be lazy.

I am so lame.

I've been thinking a lot about what is holding me back from progress. I've come a long way in a year, I know this, but I'm still not *right*. It came to me today when I was trying to get myself off the floor. (I had sat down on the floor on purpose, I didn't fall.)

I am trapped in this body.

A body that doesn't work right or consistently.

A body that doesn't look at all what it looked like when I was well.

A body that I can't trust and I can't seem to change. Seems like every time I go to try to fix one thing that's wrong the fix causes something else to malfunction. It's bullshit.

Very truly, I feel like my body is my enemy; that it's the reason I'm so unhappy and swing from merely being annoyed and bitchy to massively hating my life and all situations in it from day to day. (Not generally hour to hour, unless something really full of bullshit happens during a given hour.)

Is it at all possible for anyone to come to terms with this without turning into a stark, raving Pollyanna-Let-The-Sun-Shine-In-and-Just-Think-Positively-No-Matter-What-Kind-Of-Bullshit-Is-Going-On-Because-It-Could-Be-Worse, The Secret reading nutjob?

I've spent sometime thinking about this. I don't think you can unless you can get to the point where you're okay with lying to yourself. Or your symptoms have been at bay for a while. That's just a false sense of security, because you know - You. Know. - that MS can kick the shit out of you one day without warning and you've got no recourse.

That said, I'm still putting in 40 hours a week. I'm generally not falling into bed with exhaustion before or after 11 PM. The HRT has fixed my hot flashes for the most part.

"Look on the bright side, it could be worse."

Do something that will make me feel better:

Join my MS Walk team! If you can't walk with me in Vancouver you can send me your money!

Or you can use your links on the right to pledge my team mates Margaret, Joe, Jeanine, Erin or me individually. Every dollar matters!

The UBC MS Clinic has submitted a CCSVI two-year research AND treatment study that will cost $3,000,000. We need to raise the money so we can find out exactly what the deal is with CCSVI and MS.


Thanks peeps!

*le sigh*

I am slowly coming to accept that the job I have is the job I have. At this point I've been out of a resume worthy job for over a year, and the job I've got is probably the best I can do at this point.

This makes me want to cry, because everything I'm really good at doing is not a skill set my boss is looking for. It is the same thing every single day. Download and print his email, open his mail, transcribe the emails or letters he dictates, make his photocopies, file.

Lather, rinse, repeat.

I'm grossly underpaid for the kind of high maintenance this guy is, and he's acting like I should be glad to have his pittance. No extended benefits, not even an MSP kick-in, no extra vacation. I've been warned by the woman who works for the accounting arm of his company that he will try to pay me out the two weeks rather than give me the two weeks vacation I am entitled to under BC law.

Great.

At this point, this is it and it pays the rent and keeps the wolves at bay. But my goodness it's boring. The only thing that is good about it is that he doesn't dock my pay when I go to the doctor and I can wear yoga pants and baseball caps to work if I want to.

I haven't come to a level of acceptance that allows me to put this job on my resume yet, but I am sure as the fog of denial lifts it will come to be.

On the Copaxone front:

My Pharmacare coverage is in place leaving me on the hook for $1500. I want my extended medical to pay that $1500. My neurologist sent in all the forms (I know this because the insurance company called to confirm the DIN of Copaxone because it was missing).

It took them TWO WEEKS to send the forms to the Administrative Department that Signs Off on Such Things and now it has been another two weeks. Still no word. The last time Joe called (he is the primary, I'm the dependent.) they were very clear that when it was approved *THEY* would call *HIM*.

For my American readers, I got "government health care" in 48 hours. My private insurance company is still thinking about $1500 worth of $18,000 a month later.

The private sector is *so* much more efficient, my lily white ass.

My MS backpack is here!

These are the contents of my MS backpack. I had it delivered to my workplace today. I am not even going to go into how Purolator screwed up the delivery of this backpack THREE TIMES, but I guess the fourth time is a charm.


Because I enjoy lists, I will list what is in my ugly, lame backpack.

1. Insulated lunch bag with cold pack insert - This is for taking my Copaxone outside.

2. Refrigerator lock box. Presumably the pre-filled glass syringes should be in a box that is locked. The keys are magnetic and they'll be stuck to the fridge door and say "COPAXONE" on them, so it's not going to take a rocket scientist to get my fits out of the fridge. I realize that this lock box is probably more for the safety of children who live in the home, but I'm far more likely to have a junkie break in looking for drug paraphernalia than a small child near my fridge. Not that a junkie break in is at all likely either.

3. Autoject2 - This is an auto-injector. It is patented and has registered trademarked name.

4. Needle clipper - I guess in case the needles that come on the pre-filled glass syringes are too long.

5. Travel box and travel card - Holds a week full of syringes. It has a card that states what Copaxone is, why it has been prescribed to me and what temperature it needs to be stored at.

6. Wing extender with instruction sheet - It makes the end of the syringe wider for your fingers to hook onto as you inject. The instruction sheet makes it seem very simple.

7. DVD - Self-Injection Training - I'm guessing that this the feel-good, runaway, smash hit of the spring. I have to watch it before the nurse comes over to teach me how to do it.

8. Injection pad - I hope this is covered in the DVD materials, because I can't for the life of me figure out what it's for.

9. Daily Planner - "Rotating injection areas and injection sites is important because it may prevent short-term and long-term skin reactions related to any kind of subcutaneous injection." Rotating your areas/sites is important to keep your skin "from becoming hard, sore or indented from repeated injections."

Awesomesauce.

10. Compress - Hot/Cold - To help combat normal subcutaneous injection site reactions, apply the cold compress for 5 minutes before the injection and for 5 minutes after.

YAY!

11. Injection support mat - It gives you directions for everything you need to do your injection, either manually or by auto-injector.

12. Patient's Guide to Understanding MS - (Comes with a map of possible injection sites) - This book looks like the world's skinniest recipe book except instead of Appetizers, Entrees and Desserts it's got tabs for Multiple Sclerosis, Copaxone and Support.

13. Brochure - "All Shared Solutions nurses are professionals who specialize in MS; most have been certified by the International Organization of MS Nurses (IOMSN), a group committed to excellence in MS patient care. (Certification requires at least 2 years of experience with MS patient care.) My nurse's name is France and she's in Montreal. I practice my French with her. She is kind enough to tolerate my anglophonie ass.

BUT WAIT THERE'S MORE!!!!!!!!!!!

14. A copy of the Shared Solutions privacy policy, in both French and English.

15. One of those neck cooler things that you soak in water and wear around your neck to keep the blood going to your brain cooler.

16. My nurse's business card.

17. A copy of the latest issue of MSDialogue - Science, medicine and support for those whose lives are affected by MS. It comes with an invite to get a free subscription.

and finally...

18. A pen.

NOW, if our private insurance would just hurry up and approve my drug exception form and cover the $1,750 deductible on my Fair Pharmacare, I can actually get the nurse over here and start this stupid drug.

If private insurance is so much better than single payer, why did it take 48 hours for me to get approval for Copaxone by the government program, but three weeks after receiving the forms my private insurer is still thinking about paying $1,750. For the whole year. It's not even like that's a monthly fee.

Efficiency my ass, I say.

Gl*tterB*tches

That's the name of my MS Walk 2010 team.

Here is the link to my team page.

Support me as I walk (or crawl, not sure how the mobility will be come April) for a cure!

Wanna join my team for the walk in Vancouver, April 25, 2010?

Comment with your email address and I'll send you an invite! (I won't publish your email.)

There will be glitter! Tiaras! Feather boas!

Woo!