I hate this.

5,000 I.U. of vitamin D, 300 mg of Wellbutrin, 1500 mg of wild salmon and fish oils and a protein rich diet aren't kicking this depression.

That signals to me that my depression is "situational".

No fixing that.

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*

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.

One Week

I've been on Wellbutrin for a week. Joe says I'm already better, but he doesn't live inside my head.

Since 7 days went so well, I'm now on two pills a day. I take one at 9 AM and one at 2 PM. I have a reminder set up on my CrackBerry to make sure I make that 2 PM pill. I've also put 7 pills in the sample container the psychiatrist gave me whilst my Free Drugs for Nuts plan kicked in. These are for my purse, just in case I'm not home at 2 PM.

I have a coffee meeting on Thursday morning with someone who wants to talk possible job with her company. I don't have any details, but it could be interesting. Or it could be a total waste of time. I won't know until sometime after 10:30 AM on Thursday.

I had a lovely time in the park, except for the aphids. *shudder* Bugs and dirt are why I don't like it outside much or often.

Wednesday I have appointments with both my neurologist and my family doctor. That will be an interesting day. I'll also know then when my next mitoxantrone treatment will be. I'm not sure if I should try to have it two weeks before my birthday or wait until the week after my birthday. It's a bid decision, because I'm turning 35 and there may be a meltdown.

And a party. I'm having a fucking party and everyone I know in Vancouver had better show the fuck up for it.

Have a nice evening.