What colour would you say that is?

Hola friends,

In the interest of trying to explain what my bout of optic neuritis is like (I think I'm on day 23 of it)...

My left eye has been misbehaving. It started with a killer headache and about two days into the headache I noticed a smudge on my glasses...only I wasn't wearing glasses. I thought it might just be aura associated with the headache, since I get visual disturbances before headaches fairly often. But no, it was a smudge that stuck! Not only a smudge, but a smudge that desaturates colour. SO WEIRD.

Many of y'all know that I'm a Photoshop tweaker. I'm excited by colour and texture. I looove rich colour. So, imagine my confusion at having regular colour saturation in one eye and not in the other.

It means this:

Kind of looks more like this:

*holy hell, Blogger. I've tried to fix this alignment for 10 minutes. Work on your image adjustment!

but much fuzzier. Duller and with a thin film of greenish brown covering certain areas now and then. Reds and oranges kind of look the same out of my left eye. Same with blues and greens. It's all a bit of a colour puddle right now. Also, y'know when you overexpose an area of a photo and a white wall and bright area of a face blend together with no discernible distinction in between? Yeah, I have that all over the place.

I can still read, write, and work just fine...the main issue for me was the pain associated with optic neuritis. Every time I looked far in any one extreme (left or right in particular), it felt like someone was suddenly pushing their finger in deep above my eye. Not fun! Not even the tiniest bit fun.

I'm happy to report that the pain has lessened. The blur hasn't changed...or not enough for me to perceive a change anyway. I can't say I'm happy that my vision is off, but it has definitely made me rethink some things in life. It makes hiking in the rain considerably more difficult because the shine of the water throws off my depth perception a little. I know that I ultimately face very real possibilities of becoming more disabled in life, and this blip on the radar has made me more determined to work around them. Incorporate them into my life as much as possible, without making them the focus. I want to hike for as long as I can do so safely and responsibly. I still want to drive...with the same qualifiers. I guess I just want to be me, and focusing on MS every minute of every day means I lose myself to it and become a person I don't have any desire to know, let alone become.

I love my life...even the desaturated version.

Now I get to tell my dad I've semi-experienced his colourblindness.

P.S. Last injection went really well. I'm switching up my routine a little and it paid off last week.

Blurry lines

Since I last updated two things happened on the injection front - one not great, one pretty damn good. First thing's first.

I had an injection meltdown.

I've been talking about the injections a lot more than normal lately, and I've been trying to desensitize myself on an ongoing basis. Bringing the injection talk into my daily world led up to the most stressful injection time I've had yet. It was on my mind all day long and when it was time to inject, my stomach was in knots. I talked to Nance and explained to her that I was feeling extremely anxious about it well ahead of injection time (really rare for me - I'm never nervous before an injection and hardly think about it until I realize it's time to take the Avonex out of the fridge). So, I asked her to do the one thing I said I'd never do - I said that if I was getting stressed and overwhelmed, I was going to ask her to inject me, and I needed to know that she'd do so without argument (she knows I ultimately need to do this myself, so she'd likely say no). I'm learning not to see that as a personal failure…not quite there yet though. After trying a few of the strategies I'm armed with, I felt like I wasn't getting anywhere with the injection. One of the new strategies requires that I put the injector down as soon as the situation becomes stressful. That I walk away for a while. That I let go and return to it later. By the time I did that 3 times, the night had dwindled into the later hours and my stress was growing by the minute. So, I called N upstairs and she calmly killed the ball of fire in my chest within 30 seconds.

I was really worried that I'd be resentful the next day - mad that I hadn't been able to inject myself, pissed off that I'd relied on someone else…but the funny thing is…I wasn't. I didn't even think about it the next day. I was grateful that I had someone who could help me when I needed help, but I wasn't upset with myself. I did however, start to worry that I had given myself an out that I'd use as a crutch.

So, as last Thursday approached (changed up my injection night because I didn't want to inject while camping), I was a little nervous about what kind of headspace would develop. I got the injection ready and sat alone. Then I did the craziest thing. I looked at it. Y'see, a few years ago, I stopped watching the injection pierce my leg. That seemed to alleviate some of my nervousness about the situation, so I kept doing it. Last week, I talked to the therapist and we briefly touched on that side of things…and t got me to thinking if I should be watching…if it'd change anything. So, I watched the injector…and it grounded me. My thoughts were still and quiet. I relaxed my grip and some crazy magic happened - I breathed in a relaxed manner without having to force it into being. I won't lie and say it was an easy injection, but it's the quickest one in months, and I came away from it grinning.

One interesting point I noticed last week was that I seem to wait for the wave of stress to hit me. I get the needle ready and if I'm not feeling panicked, I seem to wait until the worry creeps in. This seems poignant somehow.

In other MS news, I'm currently experiencing a bout of optic neuritis. I've had a headache for 8 days (less and less each day), and my left eye is painful to the touch and painful with extreme movement in any one direction. Tender. Shoulder checking while driving hurts like crazy. My vision is mostly okay this time, but it feels like I have a smudge on my glasses (even when wearing contacts). I can see past it, and can't see the smudge itself, but it messes with my vision a little. Sometimes it even seems like I've a faint piece of lint on my eyelashes…a wispy visual disturbance that I can't pinpoint. All in all, it's not so bad and doesn't compare to my firs bout of it. I don't love it, but the literature is reassuring about it and leads me to believe it's temporary. The headache is bearable now, which is a big relief because camping with a migraine would not have been ideal.

In non-MS news, camping in Fundy was super fun! Nance and I hiked a few trails while the families took their kids to the playgrounds and pool. I love, love, love sitting around a campfire. I don't even know if I say a single word most of the time, I'm so relaxed. The kids all seemed to have fun, and Abbey had a blast in the mud puddles (she looked like a chocolate lab by the time we hit the waterfalls on the Laverty trail). We found a handful of geocaches and I finally reached the 100 mark! One of the caches was the site of a mysterious crater. Kind of neat to visit those locations - the hidden ones only locals know about. Overall, the weekend was a huge success even though we - five adults sitting next to tents and speaking quietly so we wouldn't wake the children in those tents - were warned by security to keep the noise down. We were hardly murmuring and the campsites on either side of us were ours. I'll definitely return to the park to hike, but come on, lighten up!

Follow-up!

Injection update - I had a grrreat appointment with a therapist!

She suggested a few things I don't normally try, including pain diversion tactics (intriguing), positive detailed visualization (mebbe challenging), moving out of the situation for an hour as soon as it becomes stressful (logical), and fake injecting myself every day for desensitization (ooh, also intriguing). Also, she suggested I not use so much pressure to hold the injector in place. I'm currently getting so stressed that I'm pushing the plastic guide ring down into my leg so hard that it leaves a deep impression. While this may seem like an obvious one, it's really tough to follow through on and it's something I've been working on for a while.

I'm excited to have new tools to try! Follow-up in a few weeks.

So far I've had the really fascinating revelation that desensitization training baffles my body! I got out the auto injector a few days ago and practiced injecting. "Pfft," I thought, "how hard can this be? There's no needle, no syringe, not even any prep…." HA! I turned the safety dial and guess what?! My finger wouldn't push the button! Nothing. After about a 2-second logic stutter, my hand pushed the trigger. I was left stunned at my body's little hiccup. So, I've been practicing regularly, and the hesitation is less and less each time. Our bodies are peculiar machines. No exception here.

I'm also fascinated by the pain diversion idea, but don't know enough about pain gateway theory to speak intelligently about it. Will keep your posted on what the therapist suggests/discovers in this area.

We'll see how the visualization goes too. I've tried it in the past and am totally open to the concept, but haven't had much success with it in the past. I need to do a little homework on this topic and figure out where to start. The overall idea is to develop a positive association with the injection, which would be great. I realize that the Avonex is meant to be of benefit, that injecting is the responsible thing to do and helps longterm, but I need to find something beyond that to focus on. Those things alone don't get me to push the button.

In other news - U2 concert this weekend! Woohoo! Camping the weekend after. It's been such a great summer so far. Abbey is investigating new beaches all the time, and we are having a blast exploring this gorgeous life.

Some clarification for those who don't fully follow...

Really great article that helps shed some light on CCSVI: Symptom Improvement Observed After Venoplasty in MS Patients

Confused

On a much shorter, much more confused note, why on earth is Dr. Barry B. Rubin the vascular representative of Canadian CCSVI and MS research? How is he the person people go to for comments on CCSVI when he has been quoted as being very dubious about CCSVI from the start? Furthermore, how is it he's on the CIHR panel of experts , but pro-CCSVI doctors like Dr. MacDonald (who has studied and treated CCSVI patients) don't make those panels?

I'm not saying CCSVI treatment is the be all and end all, but how do we even get a crack at fair results when there's no balance in the panels? Dr. Rubin doesn't study venous diseases, his research is in bioactive phospholipids. I'm not suggesting he's driven by pharmaceutical companies (at all, I swear), but how do we get past the stupid playground politics between vascular professionals looking for MS solutions in body mechanics and molecular researchers looking for MS solutions in drugs. We need both! Don't put someone whose speciality is inflammation in front of the mic when the questions are about CCSVI.

Sincerely,

baffled

Pokety poke

Time for an update? I think so.

So, lemme see. Since I started this blog to let my friends and fam into the MS side of my life (that I rarely talk about), how about an MS-focused update?

Cool beans. Here we go. This'll be a long one.

It likely goes without saying, but having MS sucks. It's scary and frustrating and flat out debilitating at times. It can steal your energy before you're even out of bed. It can ruin hikes in the rain or walks on a beach. I'm truly fortunate in that my MS hasn't affected my daily life in significant ways yet, and I don't take that for granted, but let me talk about the way it's been weighing on me the most lately…

Injections

I was first prescribed Avonex in January of 2007. Avonex is a drug produced by Biogen that gets injected into the muscle once a week, rotating injection sites (quad muscles) each week. In a message to my mom in 2007, I wrote:

I had my neurologist appointment this morning. I'm not scheduled for another MRI. He doesn't think it's necessary right now since I haven't had a major relapse since the last time I saw him. He prescribed Avonex, so I'm going to start a weekly program on that. I'll be giving myself an injection! Eek! Once I get all set up with the drug company the neurologist's receptionist is going to schedule a nurse's visit for me. I think she/he comes to the house the first few times to make sure I'm stabbing myself properly. :)

That "Eek" actually meant "I don't know what I'm in for and I'm more than a little nervous." Granted, the thought of an injection once a week wasn't as ugly scary as the time I spent waiting for a diagnosis, going through a million different tests, and wondering if I had everything from a B12 deficiency to lupus to a brain tumour.

So, I started Avonex therapy for relapsing-remitting MS, and a lovely nurse trained me on how to self inject using an orange as an example. My quad? Not an orange. I gave myself my first shot when the nurse was there to make sure everything was okay. It was scary, but I kept telling myself that it was a good thing - I was taking steps to help myself - yay! After the initial nurse's visit, I was on my own.

In February of 2007, I updated a friend with the message, "Lemme tell ya...injecting my leg isn't the same as practicing on an orange!"

By that time I was 3 weeks into therapy. Let me just jump in and say that I have had no problems with Avonex and this post is in no way anti-Biogen. Avonex has served me very, very well, and my MS is reasonably stable. The downside is that I sometimes get very strong flu-like side effects (mainly fever and headache) within 4-8 hours of injecting, but that's about the worst of it. A weekly weekend short-lived flu.

I don't know the dates for sure, but by March of 2008, I was using an auto injector. I had developed a lot of anxiety over injecting, for no reason that I could pin under my thumb, and the auto injector seemed just the ticket to get me comfy again. Auto injectors do the "pierce the skin" part of things, but I still have to administer the drug myself. Intramuscular injections don't feel great*, I won't kid you, but I couldn't figure out why the process was making me so stressed out. I didn't feel like it was an "I HAVE MS" flashing reminder or anything. I don't feel like I live in denial of MS and this was some sort of difficult face-to-face with it. Before the injector came into my life, I'd sit and sweat, gripping the syringe tightly, needle hovering over my leg. I'd need the TV off. I'd need the TV on to distract me. I'd need company. I couldn't stand company. I'd need someone to pay attention and be involved. Stop staring at me!!! I'd need…well, what I thought I needed was the auto injector I had seen advertised. And so I ordered it. It meant a change in the needle I used, but the new needle was smaller, so no problem there, and Biogen offers the needles "for free." (Sidenote: Biogen, darling, when the drug's base cost is over $21,000 a year, nothing you give me should be called "free")

This new auto injector was fantastic. For quite some time, I nearly cried with relief when an injection was finished. The injector had made my injections so much easier. See, I'm not technically afraid of needles. I'm afraid of seeing my body inflict pain on itself. The auto injector took away the fast, jabbing arm movement it took to break the skin, removing some of the drama.

And so it went…for ages it felt like part of my weekly routine. Get off work on Friday, go for supper, go home, inject, bounce around with a fever for a few hours, and then presto, Saturday morning arrived and all was relatively well. But that's not how it stayed. My anxiety over injections waxed and waned. It was never a predictable state of being.

I'm not sure when it started again, but injections have gradually become more and more difficult for me. Nance has been a fantastic support for me through all of this and I really owe her a lot for her kind words and endless patience. She breathes with me. Makes me move out of the moment and walk away for a bit before trying again. She encourages me to do things I try to do on my own and fail at. Ultimately, I feel like walking away from a tough situation, even for a minute or two, is a failure on my part. The thought is illogical (as she bluntly/kindly points out), really, but there you have it. I'm not Vulcan. One night I sat from 10 until 1, unable to push the injector's button. Locked in a ball of stress, frustration, sweat, and tears for three hours.

I'm not completely sure what's going on with me and why this process - something that I feel should be a fairly routine thing - has become difficult again. Every bit of me wants to push the injection button except the tiny few muscles that do that work. I've been holding the injector in place so tightly that it's been leaving circles imprinted in my skin. Not helpful. I've really been trying to lighten up on that end. I realize that inflicting that pain alone, even though I'm unaware of it, can send out an early warning to my body that bad things are about to happen.

It didn't take too many Friday evenings of this to push me into doing some research. Frankly, I'd rather be doing anything than crying at a piece of metal and plastic over a shot that I've been taking for years now. So, I looked into the anxiety reaction and apparently it is really, really common and one of the big reasons people stop intramuscular injection therapies! Why didn't anyone tell me? People who self inject often end up having to have someone else inject them. I had no idea. Some bring their medications to a clinic every week to be injected. Why isn't this side of injecting made more public? I called Biogen (rather, their support team that goes by the friendly name MS Alliance) and talked to a very young nurse who basically told me to try to frame my thoughts in a positive way, or to bring my syringes to a hospital to get a nurse to inject me. Uh, not helpful, lady. I'm stubborn. I need to do this myself.

So, I did some more research and found this great workbook called Learning to self-inject: a cognitive behavioural approach to overcoming injection anxiety, by David C Mohr, Ph.D., and Darcy Cox, Psy.D. I'd link it, but honestly I forget where I got it. Finally, I had found something that explained WHY I was having this anxiety response to injections. I wasn't cracking up!

I'm going to break the concepts behind the workbook down a lot, but basically I see something that I somehow perceive as a danger (sharp needle + knowledge that injections hurt), that sets off a reaction in my unconscious midbrain, my midbrain tells my sympathetic nervous system, "danger is near - react!" My sympathetic nervous system then ramps up my heart rate, blood pressure, muscle tension and whatnot, and in my case, it causes me to...do nothing. My thumb and middle finger hold the safety open, and my index finger hovers on top of the injection button. My brain is trying to keep me from harm, so it stops me from acting. That freeze response then contributes to my overall feeling of fear and/or anxiety. This is a FANTASTIC system if I see a mountain lion in the woods (fight or flight - tough call with a mountain lion), not so great when I'm trying to give myself an injection.

So, what can I do about it? We'll see. This workbook helped a lot for a few weeks, maybe even months. I followed the breathing techniques, which, as someone who has practiced Ashtanga and meditation for years (admittedly off and on with the yoga), I should realize is important. I tried focused muscle relaxation too, which is also great. But, I'm finding it tough again. So I'm going to try to see a cognitive behaviour therapist in the near future to see if that person can help me build myself some coping tools for dealing with injections. Relaxing rather than getting frustrated.

Let me just say that I am very lucky. I know if I needed someone else to perform my injections, I have people who love me close at hand who would be there in a second's notice. The flipside is I'm a stubborn Newfoundlander, from a long line of stubborn Newfoundlanders, who needs to tackle things rather than tiptoe around them. I'll report back with results!

*I have what's known as Hyperalgesia (fancy word for "fuck, that hurts more than it should"), or a heightened sensitivity to pain. When I stub my toe, I often end up weeping. Injecting into muscle hurts. Injecting into muscle of someone with Hyperalgesia is downright painful.

P.S. Did y'all see that Montel Williams had the Liberation procedure for CCSVI?

The dog ate my...everything

L'il Abbey is a whopping 4 months old!

She has the body of a 7-month old lab pup, the strength of a bull, and the mentality of a coked out toddler. Love her to bits, but hellz, I was not prepared for this amount of investment! I knew it'd be work, but the 24-hour supervision gets exhausting! How do people have children?! Still, she has stolen a huge chunk of my heart…and my shoes…and my shirt…and my jeans...oh, and she killed my hard drive.

Yellowfoot here is turning into a true water hound and it's getting hard to keep her from hopping into every pond and puddle we encounter. It's really great that we have friends with dogs and one of those pooches is a swimmer to the core. She's an adult yellow lab (larger version of Abbey) and can swim for miles as long as there's a ball floating somewhere in the distance. I'm hoping Abbey's learning by example and it seems to be working so far. She's going to be so much fun to swim with when it warms up! I can't wait to camp with her. I'm not so sure how she'll sleep in a tent, but it should be hilarious.

Just spent a weekend in Halifax with N's fam. Fun to see them and really fun for them to meet Abbey. The fam wandered the market on Saturday (mmm…baclava) and I stayed outside with the pup (no pooches allowed), and she made a zillion new friends. I'm relieved to see that this bundle of energy has some manners with strangers, including small children and other dogs. She's best outside of the house, so the Halifax waterfront was a great spot for getting a little diversity into her life.

In non-pet news, the Blue Nose is less than 2 weeks away! Woohoo! My excitement has taken a while to perk up, to be honest, but I am now officially pumped to walk my third half marathon. Finding time to exercise regularly (for anything more than an hour at a time) has been a bit trickier since getting Abbey, but I spend more time wandering beaches and trails, so it all balances out. I hope. I've done a few 18km walks lately and they've been fine, so the 21 shouldn't be too much of a leap. The only pestering unknown is how fatigue may affect me. I'm hoping for a cool day. If it weren't so inconvenient, I'd wander through life with a water tower strapped to my back, but the Blue Nose has plenty of fluid stops to keep me cool. Oh, did I mention that the half walk starts at 7:30 in the morning? Yeah. Apparently there is a 7:30 in the morning too. Who knew? [Sue me, it's one of the few awesome benefits of being a company of one!]

I also tend to get a bit lost inside of my thoughts when I'm tired, so I'm hoping walking with 2 other people and an iPod will help. When my body gets tired, I tend to start noticing my movements more…convinced that I'm slapping my left foot more…wondering if it's an early predictor of drop foot. It's not a thought pattern that I'm proud to have and it only raises its head when I'm working myself hard. It bugs me that I can get lost in the worry when I'm tired, but I try to recognize it for what it is and get beyond it.

Continuing on the MS side of things, I'm still waiting for insurance to give me a green light for Avonex. I've paid for several months out of pocket so far and…well, that's not fun and my bank account is dwindling (Avonex is around $1800 a month). It's such a process, but I've been through the first steps - getting denied by the provincial government for funding. Fingers crossed that special authorization is a go!

Overall, life is great. I've had a few external reminders recently that every moment is precious. I am grateful for this life the universe has carved out for me, MS and all.