Football and frustrations.

I LOVE PAYTON MANNING AND I DON'T CARE WHO KNOWS IT!

There, now that I've got that out I will continue. My comments will be brief.

I am trying to remember how to sew. It is not going well.

I have a great project complete except for the sewing. Drives me bonkers when I can't move forward with a project because of some crazy logistical problem.

Three more in the works, which is awesome.

I am also trying to figure out what to make for my friend Jackie. My creative juices are not flowing.

I will figure out something.

Thursday brings my appointments with the gynecologist to try to solve my chemotherapy induced menopause issues. Friday brings me to the urologist to see if me having to pee 3,058,673 times a day is related to the menopause or the MS- because apparently it is one or the other.

MS does indeed suck.

What they don't tell you.

I've been waking up every morning and not recognizing the face staring back from the mirror.

My physical being has gone rogue. I don't recognize my face, my hair or my body. My bodily functions are alien to me.

I cried in public today. That's really not my style. I haven't cried in some time and to do it in public just made it more like a humiliating kick in the teeth rather than the painful punch in the gut it is in private.

The MS people talk a lot about symptoms and how to manage them but they don't tell you *why* you just want to stay in your house and never come out. It's not just the symptoms, I am now convinced of this.

It's the little embarrassments. It's the constant mental calculations of where you can go because every trip is a metric of distance + time + seating + washrooms. It's about the little stumbles, the lack of fine motor skills making it difficult to hold a pen, the small inabilities that just build up and up and up until the degradation brings you down and down and down.

It's the stares from strangers when they don't understand why half way down the block my left leg starts to drop or why I lose my balance trying to negotiate a curb. I'm not drunk and I'm not faking in order to ask for a seat on the bus.

It's all my old clothes and shoes mocking me from the closet. It's my wedding photo staring back at me on the wall. It's Marg's boots, Dianna's corsets, Sam's travels and Laurie's job.

But the thing that made me cry today was Speechless

Could we fix you if you broke?
And is your punch line just a joke?

February

I do not have enough hours in the day to accomplish everything I want to in a day AND play Mafia Wars, FarmVille and FishVille.

Something's gotta give and it will probably be Mafia Wars and FishVille.

I'm still stitching, but it is going painfully slow because my job and my virtual mobstering, farming and aquarium-ing keep me from it.

Damon offered up a great line for a new pillow and I am trying to figure out how to make it artistic.

I have a long time internet friend who's coming to visit in May and I love her eleventy for picking Vancouver, BC, Canada as her holiday location. I have another long time internet friend who is coming in July and I love her eleventy as well.

10 days until this place really sucks.

Too bad there isn't a god to have mercy upon our souls. That would be useful at a time like this.

MS is now just this never ending annoyance that just grates on my last nerve day in and day out and then gets followed by a hot flash. It's awesomesauce.

I need more hours. I need more will to live. I need a less sucky job.

Dear my last two fingers on each hand:

I need for the feeling to either come back or stay gone. This variable level vibrating nerve thing you've got going on really drives me to distraction.

Best regards,

Lori

I am weirded out by one of the definitions for my first name in the Urban Dictionary.
I want Amazon to ship my stuff because their shipping date estimate expires in one hour.

Fuckers.

Oh the indignity of it all.

What was supposed to be a 1 hour and 15 minute appointment at the MS Clinic turned into a four and a half hour epic.

I was supposed to have a 15 minute drop in with the neurologist to confirm that Copaxone is the way we are going and then go to see the physiotherapist for an hour to get some exercises for my vestibular problems.

My neurologist was running late (qu'elle suprise!) so they sent me to the physiotherapist on time. Great. Then the physiotherapy student working with my physiotherapist was late so a quarter of the way through my assessment we pretty much had to start over to get her up to speed.

My vestibular dizziness problem is very slight, so my exercises are going to be very fine movements of my head and eyes. I ended up with the physiotherapist for half an hour longer than scheduled.

Then I end up back in the waiting room. 45 minutes later my neurologist comes out and we have a short talk. She asks me how many times I have gone to the bathroom that day. When I told her four she wrote out an order on a slip and told me to go see the MS nurse.

I had a bladder ultrasound. My bladder is fine and I have no UTI. The nurse says she's going to refer me to a urologist because I'm too young to have this not be MS related. Then I remind her that I have menopausal symptoms because of the mitoxantrone, she gets wide eyed.

"Still?"

So now I am getting a referral to BC Women's Hospital & Health Centre to get some help for my chemotherapy induced menopause. There is a chance that hormone replacement therapy will kick start my ovaries again, and Women's is the place for that kind of support.

But the gravest injustice is that MS has given me an abundance of old lady problems at the age of 35. I have a cane, my bladder is too active and I'm in menopause.

This is not how I pictured my mid-30s to pan out.

Flow Chart to MS DMDs

I don't think I can fully explain how much I love flow charts. Pie charts and bar grafts too. Unfortunately I don't want to do tables and all that so I will just number this one.

Special Therapies Pre-Treatment and Special Therapies Treatment Phase

Pre-treatment Phase

Step 1 - Referral to Special Therapies Program

I was referred to the STP by my neurologist who screened me for inclusion in the program based on the BC Pharmacare's prescribing criteria

Step 2 - Patient Education (3 hour group session)

This is what I attended today where I got this awesome flow chart

Topics covered

- review of what MS is
- description of available drugs & how they are administered
- clinical trial study results
- side effects profile and management
- patient expectations
- Pharmacare coverage

According to the facilitator, this patient education program was mandated by BC Pharmacare to help lessen "prescriber bias". The four drugs were approved by Pharmacare around the same time and knowing that one or two of the drug companies had funded hundreds of thousands of dollars of research in the province they wanted to make sure that patients were getting access to the drug they wanted to take, not the one their neurologist wanted them to to fund his/her research. Every person who is going to start an MS medication in the province of BC has to take this education session.

Step 3 - Patient to call Special Therapies Program secretary with drug choice.

I don't have to do this one because my drug choice is already made. My doctor has already filled out the forms, I just had to go to this session because it's the rules.

Step 4 - Pharmacare approval (takes approx. 1 week)

As far as I know, I already have my approval.

Step 5 - Package to be sent to patient
- bloodwork requisitions (if you are on beta-interferons)
- Pharmacare approval note (for secondary insurers, if they require it.)
- neurologist letter (for additional insurance back up or for travel)
- travel tips

Step 6 - Bloodwork screening (not required for Copaxone)
- bloodwork must be done before prescription given to patient

Step 7 - Prescription given to patient

Step 8 - MS Clinic will send requisition to company support program for home start by RN


Treatment Phase

Day 1 - Injection training and drug initiation - home RN start

- first injection done with home nurse teaching

48 hours & 1 week - Follow-up phone calls

- You will receive a phone call from the Support Company Nurse regarding side effect management and support

Month 1 & Month 3 (approx) - Follow-up clinic visit - (optional)

- injection site reactions
- side effect management
- monitor bloodwork results (Avonex, Betasteron and Rebif - monthly for 6 months)

Month 6 - Optional clinic visit

- Monitor bloodwork results (not required for Copaxone)

Month 11 - Monitor bloodwork results (have blood test 1 month prior to appointment) [not required for Copaxone]

1 year - Annual review - make appointment with neurologist

- prescription renewal
- check injection sites and Special Therapies treatment issues

Pharmacare approval needs to be renewed each year with the prescription, and that's important because most private insurers won't cover the full cost of the medication without Pharmacare kicking in 70% of the cost, which is $1600 a month. Approval is never denied unless you no longer meet the residency requirement. The 30% will be covered by most private insurers up to your drug coverage percentage. (Ours is 80%.) This is going to cost me $96 a month out of pocket until my annual maximum has been reached. (The 80% of the 30% counts toward the annual maximum, btw.) I don't know what that is yet, because I haven't filed my 2009 taxes yet.

Thus ends the fabulous flow chart of MS drug therapy in the province of British Columbia.

*bows deeply*