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*

I don't have anything nice to say...

so I am not saying anything at all.

No wait, I'll say this:

Spending half a day learning about injectable MS drugs, how to load an auto-injector, how to fill a syringe and how to deal with the side effects of Copaxone is preferable in all ways to going to work tomorrow.

Oh yeah, baby.

Projects and Impulse Control

The symbol is now official.

If your childfree and lovin' it this is for you.

It's for sale.

I like kids, really. I just don't know if I can eat a whole one.

Had my (what will now be) annual MUGA scan to check for heart damage due to 5 rounds of mitoxantrone. I don't expect anything interesting.

I am exhausted, not from MS, but from this day. Exercising this kind of restraint on a daily basis is really, reeeaaallly making my head feel 'splody.

Too Personal

The lists in Listography started getting way too personal for a blog my mum or siblings might read, so I'll do lists as I think of them from now on.

The stupidest of MS symptoms have been acting up all day. Not the ones that make me fall down or leave me unable to move or stay awake. I lose all feeling in my right index finger whilst I am typing. I get a sharp, stabbing pain in my left cheek as I am filing. These are the kind of symptoms that remind me throughout the day that I’m not right and I never will be. Irritating rather than devastating, I just keep trudging.

Speaking of trudging, I have figured out that I bring foot drop on by trying to hurry or walk to fast. If I can just walk slow and steady I can go for much longer in both time and distance than I can if I am even trying to go a short distance by hurrying.

I’m trying to read, write and stitch every day. Most days I get two out of three, and sometimes just one, but it is really rare that I get all three done. With the vertigo caused by my vestibular problems I can't read on transit to work without the threat of motion sickness so all my want to do list has to wait until I get home from work.

I have a MUGA scan on Monday to have my annual check in after getting mitoxantrone (Novantrone). It has been known to cause heart problems so I have to get this scan every year for five years, unless I start showing symptoms of cardiac problems.

I go to my How to Deal with Injection Medication education class on the 20th. I see my neurologist on the 28th to get my Copaxone script, a pep talk and then head down the hall to Victoria the physiotherapist to learn some exercises to help with my vestibular problem.

February 1 is day one on Copaxone. I'm not sure how I feel about that yet. It's not real to me nor will it be until I'm confronted with the auto-injector on the evening of February 1.

I often wonder how many other people with stupid "But you look so good" MS (that is, the kind that doesn't keep other people from having expectations of you) feel like their lives have been complicated by more than just symptoms and/or disease progression. Shots, vitamins, shower stools, yoga, therapy, canes, drugs, research, low fat, gluten-free, blah, blah, blah.

I haven't had fun in weeks. I haven't had an absolute *Blast* in years. Between my disease, Joe's schooling and our brokeness for most of the past year it feels like it is impossible to have any kind of fun. Every time I try to plan for regular fun it doesn't seem to work out. I'm not sure it ever will.

2010

I’m sore. I’m wondering if I’ll ever feel like a human being again. And then I do some physio and I feel better, but I don’t do it everyday because it’s too much of a hassle. Much more of a hassle as having your body yell at you for letting it get stiffened up? It feels so good afterwards, why don’t I do this all the time?

I am uncomfortable. I’m not happy with the way things are going and if I have learned one thing it is that when I’m not happy with how I am, I have to change the way I act. I could take much better care of myself and I don’t because sometimes I don’t care. Sometimes I’m just tired. Sometimes I’m just lazy. Then I look at my body and I want to die because I’ve ruined it. I have to take getting my body back much more seriously, because I can’t do what people traditionally do to lose weight. No weight training, no endurance training, just diet and some biking.

Will it be worth all this effort? I have no fucking idea. I don’t know, but right now I’m thinking that it’s the process that means more than the actual outcome.

I’m having a lot of vestibular ataxia lately and being nauseous all the time from the resulting vertigo is getting a little old. I do hope the physiotherapist can put something together for me that will help me treat this and make it go away.

This is how insidious MS is. It creeps into your life just one crappy, rather small symptom at a time. Numb fingers, tingly toes, tripping over lines of latitude, bumping into the corners of desks or catching door jams in the shoulder; one of these things would be insignificant and easily ignored. all of them are annoying and constant reminders that I’m not right and I never will be. Even as I type this, my right thumb is losing feeling off and on. My left toes are tingling like little shocks you get from licking a 9 volt battery are rushing through the bottom of my feet. My wrists will hurt at some point today. They hurt with short, sharp pains off and on for most of the day, most days of the week.

It feels like the year doesn't start until tomorrow. I'm cautiously optimistic about 2010 but that's mostly the anti-depressants talking. I have reset a 101/1001 list for January 1, 2010 to September 28, 2012. I'm not sharing the list publicly because much of the list is highly personal or horribly tedious. But less than 3 days in I've kept up with what I wanted to do. I've even completed one thing.

I quit smoking because Joe thought I couldn't do it. My single resolution for 2010 is this.

I will not be in the same place I am now on December 31, 2010.

"You must do the thing you think you cannot do." --- Eleanor Roosevelt