Things are Going Well

Just a quick update on where I'm at:

• I've taken 5 doses of Copaxone now.
• Still performing MCV JSJ every morning.
• Sleeping well (as long as I don't do silly things like drink coffee in the evening).
• Had enough energy to do some laundry, help set up the Christmas tree, attend a couple of get-togethers on the weekend...

Well, probably should have taken a pass on the second get-together. It was a little too much, but perhaps someday I'll learn to dial it back a little.

Any suggestions on how to make my Christmas any simpler? I'm going to streamline many things this year, the dinner is going to be relaxed (as usual), the presents are going to be oriented towards the children (sorry adults) and I will resist bolting to Victoria to escape the chaos and mayhem of the holidays. Might do that anyway as soon as Christmas is over. Hopefully.

Thinking along the lines of dinner preparation... is it too early to cook the Brussels sprouts? Ha! Perhaps I should concentrate instead on getting the cards in the mail and preparing the house.

First Copaxone Injection Done

The training session with nurse Janine was a success. We reviewed, in great detail, how to administer, store and travel with the medication. Of course we also reviewed how to dispose of the used paraphernalia and syringes - after clipping off the needle first.

Let me introduce my new friend aj.

We practiced injections using a practice injection pad prior to administering the real deal. Janine gave me the choice: manual or auto-injector (aj for short). Not feeling particularly brave, I chose aj. I was pleasantly surprised at the simplicity of aj. So easy: prepare aj, locate injection site, clean site, hold aj at a 90 degree angle, press gently until aj is ready, then click on the trigger. “It will feel like a bee sting” she said. Count to ten, remove needle, apply cotton ball. Count to ten. Done. Bee sting? Nope, hardly felt the injection at all.

A few seconds later the fun began. By fun I mean, burning and stinging sensations, lasting 10 minutes or so, followed by site tenderness and redness. Janine told me that the location I chose is actually the most difficult and usually has the worst immediate reactions. Good. I always like to get the worst case scenarios over and done with quickly.

Now, even though the pain has passed, I have a funny taste lingering in my mouth. It’s definitely not the stale coffee taste that I had prior to the injection. I don’t want to say it is a buttery taste, but it’s not metallic, fruity, salty or bitter either. Just different.

When we reviewed the manual method, it really didn’t look too difficult. I think I could manage it if I had to. The main benefit would be that I could insert the needle at a 45 degree angle and reduce the chance, especially in the arm area, of hitting muscle. In time, depending on how things go, I may find that I’ll use aj for the buttocks, thighs and abdomen and use the manual method for the arms.

I’m feeling much more positive about the whole process now. I can handle this. I think I could even easily hand aj off to someone else to perform my injection for me. It’s so unobtrusive, I don’t think it would creep them out at all.

Why am I Having a Difficult Time Making This Decision?

I need to be at peace with my decision to take or not take Copaxone. But I have so many, questions, so many uncertainties. I didn’t have this level of uncertainty when I made the decision to begin Rebif – I just did it. This time around I’m feeling so different, so vulnerable.

Rebif was a nightmare come true. How do I know Copaxone is going to be any better? Can I cope with the side effects? How will I know if it's working? How will I know if it isn’t? What happens if I decide not to begin taking it? Can I overcome my hang-up about giving myself a needle each and every day? What if the medication is wrong for me in that I should have been diagnosed with either primary progressive or secondary progressive ms?

I haven't told my neurologist about the tingling/numbness remaining in my fingertips - I've been 'ostriching'. For one thing, it is very difficult to get an appointment to see my neurologist, he’s in high demand. I did, however, tell the nurse, and she said she'd call back in a week, but I haven't heard back from her (Good, I didn’t really want to hear from her anyways). I feel defeated though, as if I've let myself down by not following up with her or that my ms might be progressing faster than expected. Am I such a control freak that I think, for even a moment, that this is of my own doing or that I have the power to stop it or slow it down?

When I was in session with Dr. Rachel, she asked why I hadn’t yet started my new medication. I wasn’t able to answer; I couldn’t articulate any particular reason or feeling as to why I was avoiding beginning the meds. As we talked over topics such as its effectiveness, side effects, cost, administering the medication, we finally got around to the big topics of ‘what if this isn’t the right medication for me because I have primary progressive instead of relapsing remitting ms?’ and ‘what if it doesn’t work?’ Addressing these would entail confronting my fears of the disease having progressed already to secondary progressive or even of having been misdiagnosed with relapsing remitting when perhaps I really have primary progressive.

Okay, now would probably be a good time to address these two topics so that I can get on with my life.

Big Scary Topic #1: What if’ This Isn’t the Right Medication For Me? What if I have primary progressive or secondary progressive ms? How will my life differ? Will there be any difference in my level of activity? Will there need to be any consideration given to our living arrangements, our finances? Will I become less able more quickly? Will I be able to maintain the same level of lifestyle – work, play, mobility? Of course nobody on the planet is able to answer any of these questions. Not my neurologist, not the nurses, certainly not me, not my employer, nobody. No one. Nemo.

What I am able to answer is… deep breath… it will be okay. Along with my family and friends, I will carry on. It may not be easy, my life may have many challenges, but I will be alive, I will be strong, be committed, be focused and I will continue to meet my challenges head on with the support of loved ones. As I do. For now, I will choose to trust that my diagnosis of relapsing remitting ms is correct. I will carry on under that assumption.

Big Scary Topic #2: What if’it Doesn’t Work? What will I do if the relapses happen with increased rapidity, frequency or intensity regardless of taking the medication? Again, how will my life differ? Will there be any difference in my level of activity? The uncertainties are staggering. Again, there are no answers.

I do know that I must, for my family and my own peace of mind, do all I can in the meantime to hold back the ms demons. I’m not ready to give up. I’m not ready to lose mobility. I’m not ready to admit defeat. I’M NOT READY. I’M NOT READY. I HATE YOU MS!! YOU DON’T HAVE A PLACE IN MY LIFE – YOU’RE NOT WELCOME!!!!!!! I’m taking the reins now, come ____ or high water. MS, you WILL NOT dictate to me when I will no longer be able to do things. I will take my new meds. I will keep YOU, bastard ms, at bay as long as it is in my power to do so. I am angry, I am resentful, I am frustrated. However, I am not a wallflower, I am not weak and I am definitely not waving a white flag. I am willing to do what it takes. BRING IT ON YOU SONOFAB%*#$.

Alright. Ahem. Now that I have confronted my own fears and concerns, had my emotional rant; it is time for today’s action plan:

1. Make the phone call to make arrangements to have the nurse meet with me for training on Copaxone.

2. Pick up my prescription from the pharmacy and drop of old meds and sharps.

It doesn't seem like such a big hurdle now. Just a couple of minor things that can be taken care of before I even get home from work today. Easy peasy.

Woke Up, Got Out of Bed...

... dragged the comb across my head...

I'm sure you all know the Beatles tune, my apologies if I've put it into your head for the rest of the day.

But I digress. Is that how you start your mornings? Just wake up and hop out of bed? Lately, I've been taking the time to perform the "thingy". Mom knows what this means - I believe it's called the main central vertical with Jin Shin Jyutsu. Why do I do this rather than leap out of bed like I used to?

1. It is a lovely, relaxing way to start the day.
2. It helps me feel better. I don't have proof that it works to keep my terrible headaches at bay, but since I've been doing this I haven't had any.
3. It is drug free. This is a very good thing in consideration of the abuse my poor liver took when on Rebif.

So, as I lay in bed this morning slowly progressing through thingy, I contemplated today's agenda. Finish preparing minutes from the Maui meetings, meet with Michele for a quick lunch at Timmy's, call the support program for Copaxone, get blood work done to see if my liver enzymes are improving... What else? How could I forget? Tonight, aside from laundry and dinner prep, I must sew Daniel's new badges on his Cubs uniform.

An upside to my particular symptoms with MS is that the tip of my left index finger is usually pretty numb. Doesn't sound like much of a silver lining, but it truly is when faced with a small stack of badges and the inevitable pin pricks. I think I've got four to sew on: 1 year bar, group, area and link badges. I may be forgetting one, but that's alright, I'll discover it when I start sewing.

Thingy done, I get up and begin the morning routine. Get lunches ready, gather clothes for the boys, restock the diaper bag, and so on. Throughout the routine I'm also taking an inventory of how I feel. I can't help it. I don't want MS to rule my life, but I haven't reconciled myself with it yet. The monster hasn't settled in the back of my mind as I'm told it will when I've come to grips with it. Letting it go and getting on with my life seems an impossible feat at the moment.

Numb left index fingertip - check.
Vision - good so far.
Left forearm - strange, but fleeting, tingles.
Left hip - sharp, shooting pains that didn't stick around for long.
Numb toes - what toes? Are they still there? Quick visual check. Yup. Can't feel them, but thankfully they're still there.
Headache - thank goodness. No headache again today.

In the shower this morning, for reasons unknown as I've never held my hands in this manner before, I held my hands palm upwards with my fingers straight up as though holding two imaginary glasses of water. As the water ran down them I felt the strangest sensation. It's difficult to explain, but bear with me. It was as though all the nerves throughout my body were on high alert, slightly tingling. If your mind just fell into the gutter, it needs to get back out - this is a family friendly blog. I felt almost weightless, as though I was floating. Odd. Oh well, on with the day, no time to waste contemplating strange floating feelings.

Half an hour later after getting dressed and getting the boys settled in at daycare I returned to the van. Rather than feeling gloomy in preparation for my commute to work in the pouring rain, I found myself smiling. Honestly, I can't remember the last time I caught myself just smiling. Feeling good. Maybe, just maybe the beast isn't sitting directly on my shoulders any more. The removal of the beast's weight, while it may be only temporary, is perhaps causing me to feel weightless.

Point Made

I just got off the phone with the nurse from the MS clinic at UBC. Jane actually answered the phone. Shocking! In all the calls I've made, this is the first time I haven't had to leave a message.

"Thank-you for leaving the message for me at home. I understand that Dr Traboulsee wants me to try Rebif at 22mcg per dose."

"Yes"

"I don't feel comfortable with that because of the depression and liver issues. I'd prefer to try Copaxone first."

"Okay, but I won't be able to speak with Dr Traboulsee until next Thursday."

"No problem, I'll call you when I'm back in town."

Pardon my poor skills at catching the excitement of a phone conversation, but I view it as a small personal victory.

Making My Case

I heard from my neurologist's office yesterday. They left a message on my voicemail at home rather than phone me at work and talk with me directly. All this despite my request that they call me at the office. Sheesh.

However, my own pettiness aside...

Dr Traboulsee wants me to try Rebif again, this time at 22mcg per dose instead of 44mcg. I don't understand why a lower dose is going to make a difference - I had just barely finished the titration period and had only had one full 44mcg dose (aside from my accidental double dose) before my blood was drawn on Oct 19th.

I don't want to complain, but I don't know if I can handle going back on that particular drug. The cold/flu symptoms were bearable, but the rapidity and depth of the depression setting in was awful. Would it be wise to go back to those dark places at night, the foreboding, anxious feelings during the day? I'm sure Dr T will advise that there are many meds available to combat depression, but given the issues my liver was having I just don't feel comfortable adding more drugs to its daily diet. And besides, I would like the option to take an Advil to make the injections as comfortable as possible, but I don't think comfort outweighs possible liver damage. Poor liver, I'm trying to treat you well.

I've made my decision. I'm going to go against his advice and request to try Copaxone instead. It's my body - my decision.

Okay, change of topic. Slightly. I've left a message with a psychologist to set up an appointment. Scary. I'm a bundle of nerves even thinking about getting help, it feels like I'm admitting to a great weakness. But I owe it to myself and my family to explore my depression. I don't want to be a member of the MS depression club. I've done some research and have found a few therapists that treat people trying to come to grips with a dignosis of a nasty chronic disease. Let's see how it goes with Dr Tracy. Fingers crossed.

Feeling Better? Absolutely!

In some ways I am feeling better. Much better. The terrible, suicidal thoughts at night have vanished. Whew. The tightness around my chest, making me feel like I couldn't breathe has eased. Likely, this was some sort of manifestation of anxiety. The sense of urgency to calm down has passed. Reflecting on my recent emotional turmoil, I can hardly believe my complacency in allowing myself to deteriorate so rapidly. I am shocked at how completely the medication took over my mind and body.

I'm still very sore and achy, tired and my kidneys still hurt. But with a bit of self TLC some of these symptoms will improve.

Anyhow, just thought I'd post a quick update before climbing into bed. Sweet dreams.

My Liver Doesn't Do Drugs

I thought I was doing well on the new medication. Perhaps I wasn't though.

My blood work tests reveal that my ALT (alanine transaminase) and AST (aspartate transaminase) levels are rather high. Almost four times the high end of normal for ALT. What does this mean? According to the Paul T. Giboney, M.D. in his article titled Mildly Elevated Liver Transaminase Levels in the Asymptomatic Patient this means:

Markers of Hepatic Injury and Necrosis

ALT and AST are two of the most reliable markers of hepatocellular injury or necrosis. Their levels can be elevated in a variety of hepatic disorders. Of the two, ALT is thought to be more specific for hepatic injury because it is present mainly in the cytosol of the liver and in low concentrations elsewhere. AST has cytosolic and mitochondrial forms and is present in tissues of the liver, heart, skeletal muscle, kidneys, brain, pancreas, and lungs, and in white and red blood cells.

Here's the nitty-gritty: the figures on my blood work were ALT 189 U/L (normal being <50 U/L) and AST 76 U/L (normal being <35). Common causes, according to Dr Giboney, for elevated levels of ALT and/or AST under five times the normal limit are: alcohol, cirrhosis, chronic hepatitis B, chronic hepatitis C, steatosis/steatohepatitis, medications/toxins, acute viral hepatitis. Man, I really don't care for the company I'm keeping on that list. Now, I wonder, is it reversible?

So, with my glass of water in hand, I'm going to do some more research on how to flush toxins from my liver and get the healing started.

I didn't take Monday's dose of Rebif and thought I'd be starting to feel better by today, day 5 med-free. But in general I steel feel crummy. My lower back is hurting a lot and I don't think the whites of my eyes are as clear as they should be. To top it all off I can't seem to warm up, my hands and feet constantly feel absolutely frozen. For the next little while I'll be avoiding any alcohol, ibuprofen, acetaminophen, carbohydrates, and consuming larger quantities than usual of water. Good ol' water...

Gotta go - nature calls.

I Have a Secret.. I Have MS

Secrets... Me? Nope. Not about my health - I'm usually an open book.

When I was in the throes of diagnosis I think I spilled the beans to almost every single person I came into contact with. It just happened. I didn't feel that what I was going through was something that needed to be hidden, and being unable to see wasn't something I could hide particularly well anyways.

On Saturday I attended a seminar for people recently diagnosed with MS. This is a clip that was played during the first presentation of the day by the neurologist filling in for Dr Traboulsee:

At the seminar, the topic of when and if you're going to tell your employer came up repeatedly. Oops, I guess I hadn't received the memo that this was something that should be kept under wraps. From what the other newly diagnosed people were saying, it's a disease that one often feels stigmatized by, embarrassed to have, even ashamed of. Really? I missed the memo for that as well. I can understand that many would feel reluctant to tell an employer about their MS if they felt that their job was in jeopardy if they didn't have perfect attendance, or if they were struggling with performance issues. However, I'm in the very fortunate position of feeling quite secure in my job - I can't imagine trying to hide my personal health issues from them.

In retrospect, how would I have explained my inability to see? Can you imagine their thoughts if they had seen my computer screen without being aware of what I was experiencing? How would I have explained that I couldn't drive? Maybe others just would not have gone to work if they couldn't see. Maybe they would have stayed at home and their employers wouldn't have been aware of how profoundly they were affected. Granted, I was the only person at the seminar that had acute bilateral optic neuritis as my first clinical relapse, so perhaps it would have been fairly easy for the others to keep their employers in the dark. One person had only suffered a few twitches a few times and had been diagnosed. Jealous.

Other than the "does your employer know?" topic, I found the seminar to be very relevant. So many of the stories told were similar to my own experiences. I laughed out loud and almost spat out my coffee when one of the speakers told a funny story about their IV steroid treatment at their local hospital. Another person explained that they had odd pains in their arm that felt like bugs were biting them! Me too! It was lovely to feel that I'm not in this by myself, I'm in good company - many of the newly diagnosed are well educated, thoughtful, intelligent people. Craig is a partner at an accounting firm, Robert is a licenced mechanic, Paula was a school teacher, Kat is a professional engineer, and so the list goes...

Many of us have had symptoms for years and were unaware of what was happening to us. Looking back, my tingling and numb toes, facial twitches and repeatedly sore left leg were probably all early symptoms that went undiagnosed because I felt they just didn't warrant a trip to visit the doctor. In all likelihood, the doctor probably wouldn't have recognized them as MS symptoms anyways.

The final speaker on Saturday was Donna, a psychologist. Off the top, she had us do an exercise in self-awareness and recognition of what we have control over. Then she led us through a breathing exercise to help us cope with difficult situations. The examples she used were: a stressful day at work and thoughts of suicide in the wee hours of the morning. Good Lord, was she reading my mind? I truly am not alone if these are her usual examples. Often teary-eyed these days, I was very close to a complete breakdown and had great difficulty in calming my breathing and keeping the tears at bay. Sheesh, I wanted to glean everything I could from the seminar, not run from the room crying. The breathing exercise was followed by a visualization session. I managed not to break down and stayed with the exercise right through to the end. While I didn't verbalize my experience along with the others, I did take a lot away from the sessions. Perhaps I should consider getting some help. Donna explained that as a group, people with MS are more likely to be depressed than those with any other chronic health issue. I believe it. I'm there now. My own mind takes me to terrible places in the wee hours, it's often difficult to acknowledge even to myself the dark and desperate places I've gone to in the night. During the day things are usually much better, but the nights can be awful. On a couple of occasions I've written some of my thoughts as they evolve and password protected the files in fear of anyone else reading them. The next morning I don't even recognize the person who wrote them.

In pursuit of the self-help theme I've joined a support group that some of the people at the seminar have been attending. Can you believe it? Not usually one to be drawn to that sort of activity, I'm surprised to find that I'm looking forward to my first meeting. My new acquaintance, Paula, will be attending and the Patrick, the group's coordinator was relaxed and friendly. I think a few others from the seminar will be there as well.

So, what do I do now with all my new information? Reluctantly, I should admit that I need some help with my mental struggles. See? I used the word should - meaning that I still haven't acknowledged it. Surely I can take something more positive away from the day... Hmmm. I understand white matter a little more clearly that I did previously. There - something positive with which to end this entry.

First Cold/MS Combo Pack

How have you been? There've sure been a lot of cods and flu bugs going around.

Well, I've had my first cold since being diagnosed with MS. I had heard that cold and flu bugs can aggravate the nerve damage from earlier relapses. They don't cause further damage, but may cause a pseudo relapse. It wasn't too bad though; a little interesting, but not terrible. My vision began to go a little squirrelly, and my left arm and leg have been tingly, but at least I maintained control of said arm and leg and my vision didn't deteriorate to the near-blindness that I had gone through in May and June. So, I just had the typical cold symptoms in addition to the flu-like symptoms from my medication, but luckily most of the symptoms have gone away now. I think my body's even getting used to the Rebif medication. Yay! I'm still very tired. But otherwise - I'm FANTASTIC!!!

On another topic: I've just spoken to Jane from the MS Clinic. I had enquiries about travelling with the medication and also wanted to know about vaccinations. I'm glad to report that I don't need to have a letter from my neurologist or a travel ID card for my trip to sunny Hawaii. I just need to bring the original packaging for the medication with the prescription sticker on it. Oky-doke. That's so easy - I wish more things in life were so straightforward. Also, I'm quite happy that I'll be able to have the flu and shingles vaccinations. Perhaps not at the same time though! Ha!

I'm beginning to feel more at home with my MS. I'm trying to be myself more - not try to conform to my self-imposed version of what I think people expect me to be like. It's a slow process, but I'm realizing that all of my feelings are okay. The good, bad and everything in between. I had a good cry last night (it felt like a weight was lifted off my ribcage afterwards), and I'm also beginning to smile and laugh again as well. My morbid humour is coming through again. Yesterday, while wallowing in the misery of trying to balance some accounts, I joked that a co-worker shouldn't be surprised to find me in a puddle of blood in my office after my slitting my throat. I was shocked to see the expression on their face. Not everybody's familiar with my dark sense of humour. Usually I disguise it, hide it under a rug so-to-speak, but I think with my new quest to be myself, people are going to be hearing more of my morbid jokes.

Let's talk again soon, take care.

Double-Dosed My Medication - Oops

I feel really, really stupid. Yes, I used that word that in my family we try not to use at all.

When the nurse was training me on using my RebiSmart machine, instead of using the 'training' section of the equipment, he used up the first two 20% doses of the titration process (gradually increasing the dosage from 20% until 100% is reached). He didn't even reset the titration setting when we administered my first 8.8 mcg dose. All my future woes could have been avoided if this simple step had been done.

This is what the schedule should have been and what actually happened:

#1 8.8 mcg: Went fine

#2 8.8 mcg: Went fine

#3 8.8 mcg: Went fine

#4 8.8 mcg: Went fine

#5 8.8 mcg: Machine indicated that it was going to inject 22 mcg. So I backed it out of the titration program and restarted it at 8.8 mcg. The rest of the injection went according to plan. I was aware that there are two types of cartridges for the RebiSmart, one being 22 mcg and the other being 44 mcg. In my naivete, I thought I'd just switch the settings over to the 22 mcg when the time came for the dose to be increased.

#6 8.8 mcg: went fine

#7 22 mcg: Backed the machine out of the titration program yet again. This time I changed the dosage setting to the 22 mcg cartridge. Picture me standing in my kitchen with the bottom part of my jammies top open to reveal my chubby tummy. My foot tapping with impatience as the machine unwound the plunger from the cartridge, then continued to whir as the plunger was wound back into the cartridge for injection preparation. Beep - I'm good to go. After the injection the screen displays some information: injection successful, dosage 22 mcg, time 9:25pm plus a visual representation of the amount of medication dispensed from the cartridge. Uh oh. A third of the cartridge had been used. My heart sank - my theory about the 22 mcg dosage hadn't worked. I had just administered a full dose of 44 mcg (1 third of the cartridge volume). Oh no. It was a very rough night. I couldn't sleep. I felt ill, sore, feverish, listless... At 2:00am I took a sleeping pill and an Advil. At least I got a bit of sleep before heading off to work in the morning.

Called the Multiple Support Program. Anita confirmed that I had indeed administered a full 44 mcg dosage and advised that I keep up with the Tylenol or Advil regimen to minimize the side effects. She's couriering a couple of vials of saline for me to get back into the titration program at the correct dosage point. It was either that or begin the titration from the beginning or continue with the 100% dosages. I'm very glad to be able to use the saline and get myself back on track.

#8 22 mcg: This should go well tomorrow night. I'll have my saline cartridges on hand to get my titration program back on track and I don't anticipate any complications or problems with the actual injection. Whew. Maybe I'll even feel a little better after the  injection than I did last night/today. It's been awful.

Medication Update (read at own risk - extremely dull)

I need to be a little more clear about the costs involved with my medication. I won't go broke taking it, but it will be a bit of a burden.

Here's the lowdown: through my current pharmacy, the medication costs $1,929 every four weeks. Each box contains four cartridges of medication, each of which contain enough doses for a full week (3 injections). My benefit plan covers 80%, so every four weeks I'll be paying $385.85. So, I could potentially be paying $5,016.05 annually for my Rebif. Luckily, Great-West Life has an agreement in place with Costco where they'll cover 90% of my drug costs if I have my prescription processed through their pharmacy. Therefore, if Costco charges the same amount for Rebif, I could save at least $2,508.03. Sorry current pharmacy, I just can't afford to stay with you - I've gotta go.

In my quest to have costs reduced (I'm kinda pushy that way), I've been in touch with Great-West Life and have made inquiries about their HealthForward program. Luckily I'm the plan administrator for Silver City, so I have the benefit of a little extra information and a personal relationship with our GWL representative. Their pamphlet indicates that for specialty medications they'd be able to set up delivery of the medication directly from the wholesaler to me. I just don't know if Rebif would be considered an eligible medication for this particular plan. I'm waiting to hear back from them, but it sounds like a good idea as it would bypass the pharmacies and eliminate the costs of dispensation and markups. Fingers crossed.

Okay, enough talk about the cost of the medication. B O R I N G. (Daniel would be rolling his eyes and moaning loudly).

Who am I From Your Perspective?

My perspective:

Cognitively, I feel like I'm back on my game. Physically, I'm sore and achy, but I can deal with that. According to my doctor, sore and achy are very minor side effects when beginning Rebif (my interferon MS medication). Things are going well, really well. My health is stable at the moment and I'm making every effort (almost) to keep it that way. The almost refers to my slide back into carbs.

Daryle's perspective:

He's trying to keep me as I was, or what he thought I was. He's trying to help, but still doesn't really know what that entails. He's trying to understand what I'm going through, my mood swings, my silence, my desire to run. It's difficult right now.

Close friends and family's perspective:

My guess is that they see that I'm struggling, but trying to keep a brave face. They want to help, but really, what can they do? Just keep talking to me. That helps. A lot.

Everybody else's perspective:

I can see. I can walk, talk, drive and answer "not bad" when they ask how I am. So... to the rest of the world it appears that I'm fine. Nothing amiss. From their perspective I'm the keen mom who loves to participate and take on new challenges.

At Cubs last night, once people heard that my vision has returned almost to normal, they seemed to think that it's all better. That somehow I'm through with MS. Cured. Wouldn't that be nice? I wish that were the case.

It was been implied that I should be taking on the same duties that I had initially planned on when Beavers wrapped up last spring. You know - keep my word. Okay, they're right. I had planned on being a Cub leader and continuing my role as the popcorn fundraiser co-ordinater. But a lot has changed since then. Last night one of the leaders who is normally quite chatty and personable, completely ignored me, refusing to acknowledge my presence when they walked past. I'd like to think that they're not aware of what I've been going through, but they do know. I realise that they've been put under more of a load because they had to fill in because the group is short by one leader and they've been burdened with handling the popcorn fundraiser this year, but can't they understand that I need to focus on my own health right now? Sorry, but they'll have to enlist someone else's help this time around. Give me a year or so to get my bearings.

Now I feel guilty when I shouldn't. I have every right to focus on taking care of myself. I have every right to focus on my family. I'm finding it very difficult not to be angry. Hell, I'm finding it difficult not to scream, not to be bitchy, not to tell the world to to f*** itself.

So, after my rant, of which there seem to be many these days, who am I from your perspective? Likely, I'm now the cranky bitch digging her heels in.

Injection #1 - Done

Finally, I'm on medication for holding off the next relapse.

Nurse Delvin spent about an hour with me to show me exactly how to take care of my own injections. Luckily, almost anything that could go wrong, did. Now I know not to panic when things do go awry - I know exactly what to do. The needle didn't eject properly (required dislodging with tweezers) and the medication appeared as a droplet above my skin at the injection site (required a quick wipe with the alcohol pad and applying pressure).

Thank goodness the actual injection didn't hurt. I was amazed. Of course I was expecting it to be quite nasty, but in all honesty, I hardly felt it. The injection site was a bit tender a few minutes later, but that was taken care of with a cold compress.

Also, it will take a little while to ramp up to the full dosage. For the first two weeks I'll be receiving a 25% dose at each injection, followed by two weeks at 50%. Afterwards I'll be receiving the full dosage, by which time I should be used to the medication.

Mr Roboto is Here!

No, that's not Mr Roboto. Darn - I'd happily sit for him to do my injections three times a week. Ha! My apologies in advance if my entry is a little disjointed. I just can't stop replaying OGG dancing to Jack White's Shakin. This song has been stuck in my head for weeks - can't wait for the CD to arrive. Whenever it's played on the radio while we're driving, the family is temporarily vaporized while I disappear into the music. Of course the family returns along with reality as soon as the song ends. Hee-hee!!

Anyhow, I digress...

Yesterday's mail delivery to the office included a nice big box containing my new robot! Like an excited child, I brought the box into my office to disembowel in privacy. The box was jam packed with all sorts of goodies: the RebiSmart auto injection unit, impact-resistant carrying case, 2 travel bags, instruction booklet, packages of needles, alcohol wipes, a "sharps" disposal container, and the all important robot battery.

Okay, now I need the medication. I've been procrastinating with calling the pharmacy to make sure that the Rebif is in the correct format. Cartridge, not pre-filled syringe. My heart was actually pounding as the pharmacist checked in the fridge. Had to keep saying to myself: I will feel better in a minute, I can deal with this, the wait will be over any moment now. My scribble paper looked like a war zone by the time the pharmacist returned to the phone. She confirmed that they had a package of four cartridges waiting for me. Excellent. I felt much better. What's wrong with me? Why on earth did I get so stressed out about the medication? Honestly, I had a very difficult time dealing with it and actually felt nauseous while I was waiting. I feel like I'm becoming, or have already become, quite a head case.

When the pharmacist said "that'll be $385" I replied that I thought my benefits card should be covering most of it. "They already did. They paid $1585"

$15.85?

No, one thousand five hundred eighty five dollars.

Oh.

Now that my cartridges of liquid platinum are safely stowed in the fridge, I'm ready. Ready to take on a second job, that is.

Time to call the nurse to set up an appointment. Leaving messages on voice mail is not my forte. I'm actually quite terrible at it. Often I have a rough script written out on my scribble paper before I make a call. However, I made the call to the Multiple Support Nurse Program cold. Cold is bad, very bad. My train of though derailed at least twice while I tried to navigate my way through leaving the message. I should call back and say that I wasn't sure if I had included my phone number in yesterday's message. This time I'll prepare. Here we go: I've got my paper in front of me, a pen to scribble with and some notes to help me with the conversation.

In the meantime I've made a list of questions to ask:

How long is it expected that I stay on this medication?
What are the various injection sites I can use?
Do I need to take the sharps disposal container with me when I travel?
Am I able to get a prescription for the supplies like the needles and wipes?
What time of day do I take it?
Will I be able to get flu/shingles vaccinations?
Are there any medication conflicts I should keep in mind?
Can I have a drink or two?
Will I get some of my cognitive function back? Energy?
Do I really have to store Mr Roboto upright? In my fridge? In its case?

Look at how thick the booklet is! Yowsa... I think I'll have some really good nights of sleep in the near future, with this as my reading material.

It's How Much? Shocking!

It's criminal how much is being charged for my medication. It's a good thing I was seated when my pharmacist called me the other day:

"Ms Newland?"

Yes, speaking.

We've just received your prescription. We don't carry this medication in stock, it won't be available for pick-up until tomorrow. Are you aware of how much it costs?

No.

$374 a week.

Pardon? A month?

No, a week. (I almost fall off my chair)

Do you want us to proceed with filling the prescription?

Ummm, yes. I think so. I don't know. How much again?

Have you advised your health benefits company of your Fair Pharmacare confirmation number?

No, I don't know if I have one or not.

Here's the phone number for Fair Pharmacare, you should call them and your benefits company right away to co-ordinate your coverage.

Thank-you very much for letting me know, I appreciate your help.

Click.

I'm stunned. Who can possibly afford this medication? If I had no extended medical coverage, it would be highly unlikely that I'd be able to go on the medication. It costs almost $20,000 a year. I'm very fortunate that 80% of the cost will be covered under my benefit plan.

So, after double-checking with my benefits plan, Fair Pharmacare and again with the pharmacist, I've got the the "all-clear" to pick up my vials of platinum. Now, if only the nurse would call to set up the appointment to teach me how to shoot up. Er, self-inject.

It Hurts To Tell...

How do you tell your baby that you're sick? Very sick.

Last week, on a quiet afternoon, I sat beside Daniel while he was reading on his bed. It seemed like a nice time to talk. He has been such a strong, supportive boy through my struggles this summer. From helping to guide me when I could barely see, to carrying things now that my left arm is weak. He's been my rock. I love him so much.

So, my conversation started there. Telling him how much I've appreciated his thoughtfulness, his help, his support. Then I asked him if he knew what was happening with me? He said he thought I've been sick. "Yes, there's a name for the disease I have. It's called Multiple Sclerosis." I almost broke down in tears, but I managed to hold them back. He doesn't know how scary this disease is or can be and I don't want to frighten him.

I curled up beside him on the bed. "Do you have any questions?"

"Is it called MS?" - yes

"Will you get better?" - yes, my vision is much better and I'm hopeful that my arm will feel better in a few weeks. But something else will happen to me as time goes on. Together we'll deal with it when the time comes.

"Can I enter the read-a-thon?" -what read-a-thon?

"Chick a Dee has a page about an MS read-a-thon to raise money. It's right here... look..." - let's check into it. I'm so proud of you for wanting to take action. Big hug.

Trying to Get Medicated and Thoughts on Sleeping

As usual, I’m playing the waiting game with the MS Clinic. This time though, I’m waiting to hear if my prescription has been faxed to my local pharmacy. Once the prescription is in place I’ll wait to hear from another nurse about setting up an appointment to show me how to self-inject the medication. I mustn't forget to ask her some questions about travelling with this medication and the necessary needles. Will I need a note from the doctor? Sounds like fun doesn't it?

I've been thinking a lot about the specialist that I see. I think I’ll request that I see a different neurologist next time around. Perhaps even at a different MS Clinic. Dr. Traboulsee just seems too focused on his many ongoing studies and not on his individual patients. While I understand that his study work may be groundbreaking, highly important... I just don’t feel like being a guinea pig. I want what’s currently on the market that works. I think it's unfair to push studies on newly diagnosed patients before they have even had a chance to come to grips with their diagnosis. Right now I’m feeling a little vulnerable, exposed, lost even. The rapidity at which my MS attacked me the second time shocked me. Clearly, my MS isn’t on the two year plan as I had hoped. The sooner I can get started with medication, the better.

Dr Blaney is hopeful that along with the meds and better management of my triggers (lack of sleep and stress) I'll be able to stretch out the remission periods and minimize the relapses. I'm to review information on sleep hygiene and get my sleep patterns under control. Okey-doke. Easier said than done. Here’s what I’ll try to achieve better sleep tonight: no caffeine after noon, no major exercise after dinner (that will be difficult to keep - ha!). Give Andy a bath and a nice big bowl of cereal. If Andy sleeps better, so will I.

From what I've read on other ms blogs, sleep seems to be a pretty big issue. What’s the deal with that I wonder? Why? I’m sure we’re not all lying there in the dark fretting about our futures. I’m not. I’m losing sleep wondering about the future, I'm concerned about being able to function the following day on next-to-no sleep. This morning is a perfect example of my zombie-like state after a very poor night’s sleep. I’m having difficulty articulating my thoughts, spelling is atrocious, even my foot felt funny on the gas pedal this morning. It was as though I couldn't get the van going - it just wanted to creep along at a royal snail’s pace, very much the opposite of my usual zippy, speedy commute. I felt like honking at myself. “Wake up! Get moving!”

I Can See, I Can See!!!

Ahhh, I'm so glad to present some good news.

My appointment yesterday at St Paul's went very, very well.

My vision has returned almost to my prescription and my blind spots have vanished. During the field-of-vision test the technician didn't need to comment "click the button the FIRST time you see the light." Yesterday, I felt like a button-clicking dynamo. While Dr Anderson didn't estimate the percentage of healing for my vision, he did say that I don't require a follow-up appointment. I'm to make an appointment when necessary. Yay!!!

Although at first I felt he was a very cold fish, he seems warm and personable yesterday. Could it be that his giving me good news has influenced my perception of him? Naw, couldn't be... However, with any luck I won't be requiring his assistance any more. I'll happily let my memories of the hallways and waiting rooms at St Paul's Hospital slip into oblivion. It's not that my treatment there was bad, it's just that I'm thrilled to have healed enough to not require a return visit.

Towel Rack 1, Christine 0

Pain is very often associated with MS. So far, I've been fortunate not to experience the debilitating pain that many suffer with. Let me clarify. I haven't experienced a lot of pain in direct relation to MS. In relation to my recent increased clumsiness, I've taken pain to a new level.

Last night, as usual, just before crawling into bed I paid a quick visit to the washroom. Somehow I lost my footing and ended up doing a face plant into the towel rack. I didn't just hit the towel rod, I smashed into the corner of the rack. The orbital bone above my left eye took the full impact. After the tears and swearing I finally lifted my hands from my face fully expecting to see blood or remnants of my eyeball. Pleasantly surprised at the lack of carnage, but still writhing in pain, I groped my way to the kitchen for an ice cube and some Advil.

Oh my goodness, the pain was so bad that I couldn't see straight. So, after holding the ice to my eye for a few minutes and with the Advil happily dissolving in my system, I crawled into bed.

My face was only throbbing a little when I went to bed. By 1:00 am it was throbbing a lot. Didn't it know that sleep is critical in coping with MS? Didn't it know that I had to get up at 5:30 am to give Andy his bottle? Didn't it know that... throb throb throb... No, it was neither aware nor did it care if I was in agony.

After a very restless sleep I awoke at 5:30 am. Shockingly, my eye wasn't black and blue, as I had expected, just a little swollen. Extremely tender, but not noticeably damaged. I'm sure nobody at the office will even notice that my eyelid is uber-puffy. Aside from the continuing pain and tenderness I think I've come out of my fight with the towel rack relatively unscathed.

Diagnosis of Relapse Remitting MS

The day has come. All too soon.

Yesterday afternoon my neurologist, Dr Traboulsee diagnosed me with Relapsing Remitting MS. Along with the diagnosis comes options for treatment. Yay! I'm quite optimistic that at least I can focus on something positive now instead of dreading every little twinge and being afraid of what's happening with my body.

I'll discuss the treatment options in another entry - I'm too tired right now to write an articulate summary.

MS Clinic Appointment Tomorrow Afternoon

After discussing my symptoms with Jane at the MS Clinic, they've set up an appointment for me for 3:30 on Thursday (tomorrow). I won't be seeing Dr. Traboulsee this time, I'll be meeting with Dr. Devonshire. Jane advised that I'll need a new referral from my GP to see Dr. Devonshire. Sheesh.

The medical system certainly has a lot of bureaucratic hoops for doctors/nurses/patients to jump through, but as I was just at the MS Clinic in July. I wouldn't have thought that they'd require another referral for an appointment so soon. However, I do my very best to jump through hoops and I've already visited my usual doctor at the clinic and he's assured me that the referral will be processed today.

Now, as to the symptoms: at its worst last night, my left hand and arm felt like they'd been covered in a glove, restricting how much I could feel. My strength had been greatly diminished as well. Normally I would have no problem picking up a pot from the stove, but I had difficulty lifting the pot of scrambled eggs when serving the meal. I needed to rest the pot on the table and tip it over to scoop out the eggs. Also, I was unable to get a strong grip on my small watering jug to water the baskets at the front of the house. These two things seem so minor and I'd love to just dismiss them, but I feel that I would be fooling nobody but myself if I didn't acknowledge my symptoms.

Emotionally, I'm right on the edge. I feel like I could burst into tears at any given moment. An injured animal - sniff. A child suffering from just about anything - sniff, sniff. The death or terminal illness of other that I don't even know - bring out the tissues, I'm tearing up. Crikey - I'm a mess. When I take a moment or two to consider my own situation I crumble into a heap.

I thought I'd take a moment to share an image that gives me peace amidst all the stress these days. It's called the Great Turf by Durer. Lowly weeds and grasses have been rendered beautiful. There's a sense of grace, balance and depth. The subject hasn't been treated in a manner to elevate it to another level, it hasn't been made to look pretty or elegant. It's just a patch of weeds, and it is perfectly acceptable. I love the diversity of the plants, the sense of movement with the blades of grass. I can almost feel the slight breeze that appears to be playing with the dandelion flower buds which look as they're about to burst open.

Take a moment in your own day to find something of beauty, something peaceful, something that makes you feel good.

Made the Call

Today is day #2 of the terrifying tingling/numbness in my left hand.

I wait for them to call me back.

I'm Okay - Really

Yesterday, I was clearly not in a very positive frame of mind.

I'm feeling much better today.

I've spoken to the MS Clinic and they've put my mind at ease...

My bloodwork for determining whether or not I have Devic's (Neuromyelitis Optica) will take approximately three months to process. It will be processed in Japan and unless the results are alarming, I won't be reviewing them until my MS Clinic appointment on February 5th, 2013. Alarming would be a confirmation of Devic's, thus ruling out MS. I'm okay with waiting.

The MRI results from my visit on Sunday evening should be processed by the end of next week, again with no rush on follow-up. This MRI is providing a baseline as to what is happening in the rest of my central nervous system from the head down. Again, I'm okay with waiting.

Concerning the relapse symptoms... I'm on the fence. I feel uncomfortable telling the nurse that I think bugs are biting me. I'm also thinking that the exhaustion could be due to Andy's not having a good night's sleep in a while.

Anyhow, things are okay. I'm just going to be patient for now.

brutal reality of my state of mind

Here are a few notes I joted down while debating whether or not to pick up the phone (freewriting at its worst)
___________________________________________

feeling like bugs are biting me
having to go to the bathroom more than usual
waking up feeling like I haven't slept a wink
completely exhausted almost all the time
having difficulty thinking/analysing/finding the right word

should i call them? should i not call them?

will the ms clinic call me when they have my bloodwork and mri results in? what is the date for my appointment in february 2013? why am i having such a hard time with this?

i just want to cry. voicemail hell, which button do i push? why can't i just get through to a person? i feel stupid enough calling in the first place, i hate my life right now what the hell is going on?    i just want this to be over and i know it never will be until i die.

___________________________________________

What a baby I am these days. God help me.

Almost Asleep at Work and Not Thinking Clearly

If I could put my head down and have a nap, I thing I would. Seriously, I'm having a difficult time staying awake. Perhaps yet another cup of tea will help keep me on the plus side of consiousness. Nobody would notice if I just had a little catnap in my office, would they? The last thing I need right now is to have a photo of me sleeping circulating the office. Sheesh.

Now, if only I could think my way through some Payables. I'm trying to process some invoices involving prepaid expenses and accrued expenses. In the past these have never been difficult to understand, but today... Ugh. Perhaps I'll work on something mindless this afternoon and tackle the more taxing items first thing tomorrow morning.

Hopefully I'll get a good night's sleep tonight. Lately, it seems that almost every morning I wake up feeling more tired than when I went to bed the evening before.

Reluctant though I am to admit my need to call the MS Clinic, the reality that I need to call is sinking in. Being in denial about what is happening to me is fine when I feel good, but if acknowleging an illness will lead me in the direction of feeling better, I'd be a simpleton not to take that opportunity. However, making a call regarding my health and the fear of a confirmation of a diagnosis (can't even type the words, they're so frightening) has me sitting here staring at the phone in a frozen state of procrastination. Should I call now? Tomorrow? How about Monday?

How Are You?

I feel like I'm on high alert these days. Waiting, yet dreading, a second relapse. A second relapse would confirm a diagnosis of MS as far as my doctors are concerned (not me of course - I'm still deeply entrenched in denial).

Every little twinge of unusual pain, however, makes me wonder if round two is beginning. Interpret 'unusual pain' as bruising not inflicted by my head-butting 1 1/2 year old, or as a result of my usual amount of uncoordinated stumbling about. Trips to the go to the bathroom have also become slightly alarming. Did I used to go pee so much?

To top it all off, I think I'm in almost constant "pseudo relapse" mode due to my lack of sleep and fretting. My focus and colours vary on a day to day basis. I hardly know how to answer when people ask how I'm doing. What do I say? "Well... today the greens are psychedelic and the reds are piercingly bright, to the point of drowning out the amber shield surrounding the traffic light. Oh, and I think my focus isn't fantastic, it was slightly better yesterday." Sensing that this would both bore and confuse people, I instead reply with: "I'm feeling great today. How're you?"

On the upside, I now go for hours without even thinking about the mystery surrounding my health. Overall, I feel great.

Ticking Right Along

The exhaustion has passed - thank goodness. I still feel rather tired, but I'm sure that's just because I haven't been working out or walking as much as usual. When back in the regular swing of things I'm sure I'll feel better.

Happily, I think my vision has maintained itself at 85%. While a little greedy in hoping that it would return to 100%, I don't think that will happen. While I miss a few things (how deep the water is in the wading pool, the subtle differences between similar flowers) I rejoice in the many things that have returned (whole airplanes, birds, turn signals, and so on). While I quake in my shoes every time my vision diminishes; like lights becoming extra sparkly, or greyness beginning to descend. I'm starting to understand that if these temporary setbacks last less than 24 hours, I'm not to worry. They're "pseudo" relapses. Following is an excerpt from MedHelp's website:

Pseudo-Exacerbations (Pseudo-Relapse)

People with an early and very mild course may be entirely without symptoms at all most of the time. If they become overheated or extremely fatigued they will notice the appearance of symptoms they have had before. If these symptoms last less than a day, then the sources that I have read would refer to this appearance of symptoms as a "pseudo-exacerbation" or a false relapse. For people with more constant symptoms, they may also notice marked variations of the intensity of symptoms or re-appearance of old symptoms with over-heating and overexertion/fatigue. These episodes are typically brief and resolve with cooling off or resting.  These would also be considered to be pseudo-exacerbations

As I haven't been sleeping well lately, I suppose that a fair portion of my pseudo-relapse can be attributed to being constantly overtired. Recently, I've been laying awake wondering about who I can find to take care of the boys for a couple of weeks while Liz is recovering from her long-awaited surgery. It is weighing heavily on me. I don't know what we'll do if we don't find someone soon.

I continue to be in complete denial about possibly having MS. Really, they (traditional medicine) will have to prove themselves. Even then, I may not believe it. Of course I will follow their recommendations and behave myself, but I won't be a meek and mild little lamb accepting everything. Life will carry on to the best of my abilities and I will steadfastly refuse to let MS own me. Also, I have high expectations of my treatments with Dr Blaney. While I understand he may not be able to cure what ails me, he may at least be able to get my immune system back in line to the point where it won't over-react too much and leave my body alone. Mentally, I beat myself up enough - I don't need my immune system beating me up as well. Ha!

Coming Down

I don't know what I'm supposed to feel like when I'm coming off the steroids. This evening I can barely manage the energy to put the dinner dishes on the counter, let alone wash them. Is this normal? I have no idea.

Naively, I thought I'd feel strong after the IV treatment; full of energy, ready to conquer the world. Instead, today I'm feeling overheated, irritable, tired, hungry and small. Small in that I just want to curl up in a corner. Not even with a good book, just curl up and rest. With so many books beckoning, a little flutter of guilt tugs at my heart. Especially with the Sechelt Festival of the Written Arts fast approaching.

Well, I'm going to follow my body's cues and crawl into bed.

Steroid Mama - Look Out!

Okay, usually I'm pretty stable, I don't rock the boat and I'm not one to make snide comments, at least not out loud. Sure, the comments populating my brain are just like anyone else's. Sometimes short-tempered, perhaps a little crude, definitely not all roses and daisies. But while on my five day mega dose of intravenous steroids the filter that normally prevents outbursts, rude comments and so on has in effect been removed.

Last night was the final night of my IV treatments and I just couldn't help myself. When one of the nurses in the emergency department called out to the other nurses "Has anyone seen the man with chest pains?" I wondered aloud about how they could "lose" him and wouldn't it be a terrible thing if he had collapsed and died? I don't think I was quite that articulate, but that was the gist of what I was trying to get across. Eek. I think my lack of comment-filter was contagious. A very dear friend keeping me company got in her fair share of comments too. When a very speedy nurse zipped by with a patient straggling far behind, she called out to "hurry up - she's quick." Ha! I'm glad we were there to liven the place up a little.

Some of my comments this week have been terrible, I definitely have some apologies to make. For example, I replied with "bullshit" when Daryle apologized, somewhat insincerely for snapping at me one evening. I wonder who else I've upset? Most likely some people at the office - I'm so sorry - I'll apologize in person when I stop by during the coming week. I've also likely ticked off every nurse in the emergency department at the Delta Hospital. I questioned each and every one of them about the medication they were administering. I don't think I can be blamed for that one though, the very first treatment was almost given with the wrong prescription medication. Yikes! Then I complained about bubbles in the IV line, then about how they were administering the saline flush, then about how long I had to wait to "just get hooked up" with my drip. No wonder one of the nurses administered the drip at twice the normal rate the other night. Ouch!!!! My arm was so sore I could hardly drive home.

Speaking of driving home. My sight was set on super sensitive, ultra-bright piercing x-ray vision. The traffic lights jumped out at me, the flowers were psychedelically bright and to top it all off I had ants in my pants. I could not, for the life of me, sit still. Fidget, seat-dance, wiggle. You name it, I moved in any way I possible could. Must have looked very creepy driving home last night, a monster grin across my face after having the IV paraphernalia removed and dancing to Fun's "Some Nights."

However, in retrospect, I'm glad that I had the IV steroid treatment done. My vision is significantly better. For the first time this season I've seen a small, fast bird, cottonwood puffs floating by. I'm looking forward to seeing the rain again. I even saw the colour on a hawk's belly as it flew by. My guess is that my vision has returned to 85% of what it was to begin with. Not bad. Not fantastic, but I'll take whatever I can get. At least I can drive and I'm able to make out all of the colours again.

Choice to Make: Traditional vs Alternative

Wednesday, July 4th, 2012

This morning Mom and I went to meet with Dr. Blaney at the Stillpoint Project. We spoke about my symptoms, had an assessment of where I'm at and he even did a small treatment on my left hand where I've noticed a little bit of numbness on my pointer finger.

He explained the different approaches to MS by the traditional medical community and the Marshall Protocol, of which he follows with his own adaptations. It appears that the medical community treats the symptoms, while the MP treats the body as a whole preferably before the onset of symptoms. He explained further that minocycline is part of his treatment (so I wouldn't be taking my 50/50 chances through the trial) and that the importance of MRIs is overstated. Our brains are dynamic, and the lesions my heal and/or pop up elsewhere. Keeping track of them just for the sake of tracking them doesn't actually aid in the healing process. He was also encouraged to be treating me at such an early stage of possible MS, prior to the onset of irreversible nerve damage.

I left his office optimistic that I'll be in good, if expensive, hands.

Although most members of my family will be supportive of my decision to seek alternative care, I know there are certain people very close to me that look down on alternative medical treatment. They hold a very common view its practitioners with derision and minimize any positive results they hear about. I don't care. I need to look after myself, and to be honest, the mainstream medical community doesn't appear to have my best health interests at heart. I've just finished reading an article in Maclean's by Anne Kingston on Monday, June 25, 2012 about how Canada has let down MS sufferers. How sad that decisions regarding research and funding basically come down to political views and pressure from drug companies, rather than consideration of science or caring for a considerable sized group of Canadians suffering with MS. Frankly, I don't have time to wait for the medical community to get their heads out of their rear-ends. Pardon the crassness in my language - I'm not about to sit quietly and wait for the slowly turning wheels of medicine to help me.

After my meeting with Dr Blaney, Mom and I went to the Delta Hospital for #2 of my IV treatments. 3 1/2 painful hours later I was finally able to head to the office. The IV treatment is supposed to take no longer than 1 1/2 hours, so both Mom and I were terribly frustrated with having to wait so long. The IV was already in my arm, I just needed someone to hook me up and set up the drip. Crikey. When it turned out that my file had been overlooked, everyone who spoke to me pointed the finger of blame at someone else. Except that is, for the cranky nurse whom I inconvenienced by needing her to set me up. She just did her job in silence, then abandoned me.

After our trip to the hospital, Mom dropped me off at the office. I'm sure she was relieved to finally be rid of me. My temper had been tested at the hospital and quite frankly I don't think I was very pleasant to be around. I had initially wanted to spend the entire day at work, but I suppose life got in the way. Sorry Work. However, I gathered information, did my inventory, set up some Payables and piled a heap of files in my bag to take home.

MS Clinic Day

Tuesday, July 3rd, 2012

Well, what a day of ups and downs!

Mom accompanied me on my trip to UBC for my day of appointments at the MS Clinic. Thank goodness, I don't think I could have handled going through it all on my own.

In the morning we met with Dr Rachel and Dr Traboulsee, my neurologist. Refreshingly, they were pleasant, personable and relaxed when meeting with me. We performed more tests: reflexes, eye movement, peripheral vision, temperature sensation, vibration sensation (c'mon big toes - cooperate), balance and so on. With my MRI images on screen, Dr Traboulsee pointed out the white matter lesions in my brain and explained what there were and how they would ultimately effect me. He also pointed out that we don't have imaging of my spine or legs, and that these images should be requested in my next year's MRI. Interesting.

He also explained that having optic neuritis doesn't immediately indicate that I have MS. He said that it could be a one-off, the beginning of relapsing-remitting MS or the beginning of progressive MS. My odds, apparently, are 80% that MS will develop and 20% that it won't. I'm clinging to the 20% life preserver with all my strength.

Dr Traboulsee also recommended that I go on a five day intravenous treatment to bring back as much of my vision as possible. In response to my comment that I had been told that it was too late to begin steroid treatment he said "Can you see as well as you did before this episode? If you can't then it is not too late to try."

From the meeting with Dr Rachel and Dr Traboulsee we met with Leila, who tried to explain and encourage me to participate in a clinic trial for minocycline, a medication that it is hoped will prevent MS from settling in fully. The trial is available to patients in my situation that haven't had the second MS episode yet. 50/50 chance of receiving the medication and MRI images every three months. Very enticing. Those are two pretty big carrots to be dangling in from of a possible MS patient.

Then we met with nurse Cecelia to set up the IV treatment at a hospital closer to home. She also wanted to clarify how much vitamin D Dr Traboulsee had recommended.

Okay, time for a break. Let's go look for some lunch. Enticed by Cecelia's mention of burritos, we went searching in the "village" a block away. Eventually, we found the restaurant, and it was worth the hunt!! Yummy! Spicy meat, fresh cilantro salsa, freshly made guacamole. Let me say it again - Yummy!

Then back to reality - popped into the lap at UBC to have my blood drawn and tested for neuromyelitis optica, also known as Devic's Disease. I'm hoping that this isn't what happening with my sight. It's a dreadful disease.

Ahem, sorry to go off on a tangent. Back up my series of appointments. I'd been dreading meeting with Dr Anderson, feeling that he's be his usual cold-fish unpersonable self. But today he was all affability and friendliness. Performed the following tests: colour plates, gradient (black to light grey), distance, visual eye exam, etc. He said without any hesitation that I'm able to drive again and confirmed our follow-up appointment at St Paul's Hospital in the autumn. If I could have done back-flips down the hallway I would have. I was so happy to have my driving freedom back!

After our long day at UBC Mom convinced me to begin my steroid treatment that had been arranged at Delta Hospital. Ick. Really, this was the last thing I felt like doing. I was absolutely exhausted. However, no time like the present, so off we went. Afterwards, we dropped off my prescription for some sleeping pills and picked up a quick dinner salad from Subway. After dinner Mom and I popped up to pick up the prescription.

After a couple of quick phone calls I collapsed into bed.

Minor Setback - Things Didn't Spiral Away Again

Luckily the deterioration with my vision on Monday and Tuesday was short lived. Things seem to be back on track and I'm hoping that I'll get the green light from Dr. Anderson during my MS Clinic visit on Tuesday to drive again.

Over a month now without driving... I can hardly believe it. Not that it has slowed me down much. I've been walking over the bridge to work, carpooling and so on. Haven't missed out on anything, and I'm bound and determined not to either. In a moment I'm going to check the bus schedule for Tuesday morning for getting myself down to the UBC Hospital where the MS Clinic is located. Mom's going to meet me there and stay with me for the day.

Slipping

I'm convinced that my vision has worsened since yesterday. In addition to the larger font size, I'm losing colours again. The pale colours so often used on web sites as borders to boxes and so on, have essentially vanished.

#@#$*^*%)*&)%

Don't my optic nerves know that they're supposed to continue healing until at least July 20th!!!!! I'm not very pleased with them for misbehaving again so soon. Bad optic nerves, bad.

Troubling Morning - It's Not Back Already is It?

My sight seems to be worsening a little bit. I've found that I'm enlarging text on my computer screen this morning and I'm having a lot of difficulty seeing certain colours like pale blue and yellow. Stupidly, I considered taking a picture of my screen thinking that it would show everyone else what it looked like to me. Silly thought! In the meantime, I know that the designers of web pages expected users to be able to see the edges of boxes, scross bars, etc. without straining, but I can barely tell that they're there at all.

This past weekend, I took Daniel camping with his scouting group. Overall, we had a blast, but I had a difficult time over the weekend explaining why I'm unable to drive, unable to see my son running from across the field, why I've been panicking when I've lost sight of him. How do I tell people that I hardly know that I have vision problems likely related to MS? How do I answer their thoughtful questions and comments?

It worried me that I'm anxious when Daniel runs free with the other children. I do panic, I do fret. I try not to let it show, but I went searching for him several times this weekend in a slightly panicked state. It's just not fair to him - can he sense that I'm feeling overprotective, that I feel like I'm not able to look after him? An 8 year old shouldn't have to deal with their parent's anxieties and troubles.

I don't want to become the "strange half-blind crazy mother" of the group. Can you imagine? Terrible. Somehow I need to cope with this more appropriately. All I can think of is that I'll get used to my situation over time and learn to cope with not being able to see my children from halfway across a field. I just can't imagine ever feeling complacent about losing track of my children when they're actually nearby.

Also troubling at the moment is that I'm feeling confused or at a loss for words more than I normally would be. I'm having a difficult time retrieving appropriate words to describe my thoughts. I felt overwhelmed yesterday when cleaning up the kitchen area for inspection by the camp caretakers. The list seemed to be a mile long and I just couldn't figure out where to start. Really, cleaning a kitchen? How hard can it be? I hope that I'm not going to lose my mind in all of these troubles. Losing my sight is one thing, losing my mind is another, completely different ballgame. I'm becoming increasingly worried that something terrible is coming soon. I can't put a face or a name to it, but it's coming regardless. God help me.

Earlier Posts

Nope - Not Accepting This - Can't Make Me (posted Wednesday, June 20, 2012)
Am I behaving childishly? Absolutely.

Be assured that the childish behaviour will continue. I'm stomping my little foot, digging my heels in, having a little pouty fit with my arms crossed. You bet. I'm ticked!!

Diagnosis of MS via email is cold - very cold hearted. Frankly, I'm not buying into the diagnosis. Call it denial, putting my head in the sand, keeping the blinders on...

My charming neuro opthalmologist finally had his secretary respond to my email that I had sent to him last week. The reply indicated that I have been diagnosed with MS and that the purpose of my attending the MS Clinic is to confirm his diagnosis. As far as treatment, he's said that any decision regarding treatment is up to the discretion of the MS Clinic and that they may prescribe steroids or some other medication. Dear Mr Neuro Opthalmologist has clearly stepped out of the ring as far as far as attempting to get to the bottom of what's going on with my vision. That's just fine. Quite frankly, I feel like washing my hands of him too.

So, where am I headed from this point?

I've already begun the process of obtaining a second opinion.

I also have an appointment at the Stillpoint Project office to meet with Dr. Blaney. I'm really hoping that he can help me. He's well known for his treatment of autoimmune issues and I've heard good reports from one of his patients relating to how he has helped to improve their overall health.

Now I must revert back to my normal, responsible, quiet self and get on with life. Must focus on my day to day life. Today, I think I'll walk over to pick up the boys from Liz's, drop off the last of the popcorn money for Daniel's scout group and make the business bank deposit along the way. Deep breath. Smile. Laugh even. It's beautiful outside - I'm going to open the blinds to let in some of the gorgeous sunshine!

Thankful (posted Thursday, June 14th, 2012)

Low doesn't begin to describe my mindset over the past week. Yesterday was especially depressing.

"Don't look it up online. No matter what you do, don't look it up online." I can't tell you how many times I've heard that. Have I listened? Nope. In my curiosity I went online to check out the MS clinic to which I've been referred. It looks like a support system for people with MS (not surprisingly given its name). BUT I HAVEN'T BEEN DIAGNOSED WITH MS!!!!! Pardon me, but: WHAT THE HELL!! I don't want to sit in a circle and commiserate, I don't want to know how to deal with MS. I don't want to meet the people working there (I'm sure they're all very pleasant, but I don't wanna - can't make me). I don't want to know anything about it yet. I don't want to walk through their doors - thank-you very much. Yikes, did I say those things?

Perhaps, after checking out the MS clinic website, sending my neuro-opthamologist an email asking questions to which I don't think he has the answers, wasn't my best decision yesterday. He hasn't even responded and I know he's in his office today. What am I to do? Wait? Hang tight? Sit quietly with my hands crossed on my lap like a good girl? Bullshit. Those of you who know me, know that I'm utterly incapable of just waiting without taking any action. Patience is not one of my virtues.

I need inspiration.

A plan.

Guidance.

Recently on Mennonite Girls Can Cook, a blog that I follow, one of the contributors discussed dealing with daily problems, both large and small. Here are some points I've gleaned:

1. Realise that a problem free life is an unrealistic and false expectation. It sounds very negative, but it's true. Troubles will happen. Life is still rewarding and full of joy even with the problems that come our way.

2. Begin each day anticipating problems and at the same time mentally prepare for them. When problems are expected, they won't blindside me. I don't want to sound like a pessimist, but consider this: a tree that has been buffeted my many storms is prepared to suffer through many more. If a tree has led a sheltered and quiet life, it will fall in the lightest storm that first comes its way. I am the strong, prepared tree. I'm in the middle of a tempest right now and frankly, I'm okay. I'm still standing tall.

3. Consider troubles with a thankful heart. View a problem in a positive light instead of seeing it as a negative. I can choose to hit the panic button or to be thankful that I have the opportunity to take a deep breath and calmly assess the situation. Take my current situation for example: I am choosing to be thankful that some of my sight has returned and to think positively that it will continue to return. I am thankful that I've been able to see the specialist and have all of the necessary tests performed in a timely manner. I am thankful that I'm surrounded by people who care about my well being and continue to support me. I am thankful that I have a sense of humour about my situation. And so on... Choosing thankfulness changes my perspective.

Well, I'm feeling a little better now. I'm going to make some phone calls and see what I can do about my situation. I'm not angry, not ticked off. I'm glad that I'm able to make the calls myself, that I can still have some amount of control over my life. I can deal with this, it's not so difficult. Day by day, problem by problem.



"You Have... Oh Wait, We Still Don't Know" (posted Friday, June 8th, 2012)

Disappointment. I think that's what I'm feeling. Numb as well. Let's throw in discouraged for good measure. Yesterday's appointment with my neuropthamologist should have been more enlightening. After scheduling my follow up appointment for three months down the road, the purpose of which is only to monitor my visual status, I left feeling like I'd been set adrift to fend for myself. There was no longer any urgency to discovering the cause of my issues and there's nothing anyone could do to improve my situation.

The MRI performed on Monday revealed that there is indeed some white matter present on my optic nerves as well as other parts of my brain. Not enough to completely confirm MS, but enough to raise suspicions that something is amiss. What though? With the decreased likelihood of a virus being the cause of my troubles, they're now focusing on autoimmune diseases. MS hasn't been ruled out, but Devic's disease has now been thrown into the ring as well as "some other rare autoimmune disease". Some other? Isn't there a simple test to determine what's happening?

So, now I wait to hear when my appointment at the MS clinic will be. Apparently, that's where I'll find out the extent of the nerve damage to my reflexes and hopefully point us in the direction of determining which autoimmune disease it is that I have.

Is there any good news? Yes, there must always be a little good news. Right?

My colour vision has improved. Not back to what it should be, but it's not terrible either. Just don't ask me to determine the difference between pink and lilac. I can't see them. They're grey. But yellow, red, blue, green, orange (sort of) are back in strange and bizarre ways. They all look a little "off", but at least I can see things in more than various shades of oatmeal.

I have also had a significant improvement in seeing things that are in close proximity to me. Paperwork, books, food on the cutting board, my ukulele - all these things are quite clear. The white still creeps in a bit in its effort to overtake dark letters when reading, but I can read without too much difficulty.

The news relating to my long distance vision isn't so rosy though. It has worsened since last week. Damn. I was feeling quite positive about going through the eye chart and was quite deflated when I couldn't make out the next row of letters; a row that I had been able to see with a little difficulty last week. Yesterday, I questioned whether there were letters actually there or not. I couldn't even see the shape of them.

Good Morning Toothbrush! (posted Thursday, May 31, 2012)

I'm on top of the world this morning - I was able to see my toothbrush! Let me put this into context: on the weekend my toothbrush had essentially disappeared, to the point that I put the toothpaste on the wrong side, only to realize my mistake when I put it into my mouth. Ha!

Yellow's back again as well. I saw it briefly Tuesday morning, much to my delight. I hope it stays around for more than a couple of hours this morning. Even if it vacates the building again though, I'm hopeful that I will see it again soon.

It has been a busy couple of weeks, trying to get to the bottom of what's going on with my sight. Here's my timeline of what's been happening:
Monday, 5-14-12: noticed that my computer screen looked a little odd. It was as though the white background was trying to engulf the black text. Yellows and light colours seemed blindingly bright, while the dark colours appeared darker than usual.
Wednesday, 5-16-12: made optometrist appointment for following Tuesday
Friday, 5-18-12: called optometrist in desperation to see them earlier - no luck
Monday, 5-21-12: beginning to have difficulty driving, Daryle had to take over
Tuesday, 5-22-12: optometrist suspects optic neuritis - referral to Dr Anderson at St Paul's Hospital (SPH). Eyes otherwise healthy, field of vision not good, prescription changes ineffective, borderline for driving.
Wednesday, 5-23-12: vision worse this morning. Saw Dr Yang @ clinic (recommended going to emergency to get to a specialist more quickly). Back to work for morning, then drove home to park the van. Walked to have hot-lunch with Daniel. Daryle picked me up from the school and took me to emergency. ER sent me to Dr Tsuyuki who came to the same conclusions as optometrist and recommended that I see Dr Anderson as well. In the meantime I heard from Dr Anderson's office and had an appointment for 9:00 the next day.
Thursday, 5-24-12: vision worse this morning. Appointment with Dr Anderson was frustrating in that I had to go through some tests for the third time in three days: field of vision, colour plates, basic eye exam, etc. Was hoping to have some different tests performed, but such was not the case. Dr Anderson wanted an urgent CT Scan done, but his receptionist wasn't able to get anything before June 7th. She was able to make an appointment for a Vision Evoking Potentials test for the 28th and a followup appointment with Dr Anderson for June 7th. Very emotional night - felt like I was going blind and the medical system just didn't give a damn. With my vision diminishing each day, I was truly panicking.
Friday, 5-25-12: better grip on myself today - not quite so emotional. Made arrangements for a CT Scan at office in False Creek in the afternoon (love the private system, too bad it's so expensive).
Monday, 5-28-12: VEP test (alternating checkerboard) this afternoon. After the test Ted made arrangements for me to follow up with Dr Anderson the next morning at 8:30.
Tuesday, 5-29-12: Saw yellow for a few hours this morning! Also saw whole birds in the sky, instead of the glimmer that a bird may have flown by, that I've been seeing lately. Dr Anderson's office. VEP test showed that the signals from my eyes are delayed in getting to my brain, indicating demyelination of optic nerves which falls in line with either a viral infection or MS. OCD test performed again to check retina. Scheduled for Goldman test on June 7th and need to arrange an MRI.
Wednesday, 5-30-12: no improvement this morning. Trying to make MRI appointment, no success yet. Hope to hear tomorrow about appointment.

Throughout all of this activity, I've been trying to keep life as normal as possible, working whenever I can, exercising, cooking and caring for my family. All of these have been challenging. At work my screen settings have been changed to high-contrast, extra large font in addition to using magnifiers. I've been itching to use my new Zumba DVD, so I tried to follow it the other night - hilarious. So I had Daniel join me in the hopes of following his moves. Wrong, trying to follow an uncoordinated 8 year-old's moves while keeping an eye on the screen was dizzying! Even cooking is different. For example, I can't see where the knife blade is on a tomato or how big the slices are. Also, red and brown look the same (a big issue when cooking burgers). Personal care has also presented a few challenges: I can't see my own face and nails, let alone see Andy's nails well enough to trim them. Perhaps we'll be heading to a salon for a pedicure in the near future. There's gotta be an upside here somewhere.

Today, I'm just hoping to hold onto the colour yellow and not use my magnifiers quite so much. Fingers crossed.

No Less Alarmed (posted Tuesday, May 22nd, 2012)

Well, other than being assured that my actual eyeballs are fine, I'm no further ahead in figuring out what is happening to my sight.

My optometrist performed all the usual tests (checking blood vessels, peripheral vision, pressure, prescription...) and found nothing conclusive. Here's what was discovered: my vision has rapidly deteriorated to the point where if it gets any worse I need to stop driving. My vision is now border-line for being able to operate a vehicle. Yikes. She didn't want to speculate as to the cause of what is going on, but used the term optical neuritis a few times. Then she stopped talking, saying that she didn't want to unduly alarm me. Too late - I'm already there.

I hope to hear from the specialist soon. Before I can't see at all.

I don't want to wallow, but... BLOODY HELL!!! I have things to do, I'm just getting going, picking up speed. These are some of the things I was looking forward to in my life in the near future: becoming a cub scout leader, volunteering on the school PAC, running again (just bought new funky runners), continuing to manage the office at work, possibly participate with Andy in a documentary that I've been contacted about, participate in a focus group on property tax assessment... the list goes on and on. I don't have time for this!!!

Deep breath. I need to focus on the here and now. I'm going to sign off, finish some work at the office, pick up the boys, and then make dinner. I'm not deeply religious, but I feel that we're given what we can cope with. New realities become our revised version of normal, we carry on. We have to, the alternative sucks.

Nervous, Worried (posted Tuesday, May 22nd, 2012)

I don't know what to say. I'm quite worried about my sight.

I'm going to see my optometrist at 11:00 this morning. Best case scenario: give it time, your sight will get better in a few days. Worst case scenario: you've permanently damaged your eyes and you're going blind (little melodramatic - no?)

This has come on so suddenly. I noticed it when I began work last Monday morning. It got progressively worse through the week and I've got big problems this morning, just over a week later.

My reality is such that I can barely see my computer screen - I can barely see the words I'm typing. Colours are slowly vanishing - they've been reduced to various shades of grey. On the weekend, for example, when I tried to play I-spy with Daniel, I couldn't tell that the item he was spying was even green - it looked dark grey to me. This morning I thought I had taken my dark blue sweater out of closet and only realized that I had my grey sweater on when there was no tie to wrap around me.

I took the family for a drive yesterday. I wanted to "kidnap" Daryle and the boys and go to Fort Langley. But as I drove along it became such a strain, both on my eyes and on my nerves. I was unable to see how much fuel I have and the speedometer is very difficult to see. I felt worried that I'd miss observing some critical event that I should be able to avoid, but wouldn't be able to see and react to quickly enough to avoid an accident. I asked Daryle to drive and after we switched seats I quietly cried, tears welling up.What am I going to do if I'm going blind?

I need to be strong - I can't let anyone know I'm so worried. But I don't think I can carry on hiding it for long.

Where the hell is the cursor!!!!! I had to hit "control end" to locate the damned thing. I was going to edit some of my text above, but can't navigate through the text with either the arrow keys or the mouse. Anger. Frustration. As I can't see the frigging screen - I'm signing off. I'll try to keep you posted when I'm back. With any luck I'll have happy news.