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.

I'm not dead, honest!

Okay, time for a frikken update. Y'all must have given up on me by now, but let me tell you - puppies are a LOT of work! (no one told me this!)

This toothy little bundle (11 weeks, 22-23 pounds-ish) is the most boisterous creature I have ever encountered. Pair that with a authoritative Siamese cat and it's a complete gong show 24/7. The silver lining is that the scrapes and cuts on my hands are healing, the trips to the backyard at 2 AM are now sliding towards 3-4 AM, and this yellow ball of fun is so adorable, she'd make Cher's heart melt. [insert glossy-eyed, blissed out puppy love gaze here]

In other news…wait for it….wait for it…I have health care coverage! I still have to do a dance and jump through a few hoops to see what kind of coverage they'll provide for Avonex, but anything is better than paying nearly 2 grand a month for 4 tiny syringes. So, much yayness on that front. I'm excited and relieved. I can't talk about it with any seriousness because I become a relieved, weeping mess, so let's avoid that, shall we?

In other other news, I've registered to walk another half marathon. The Bluenose again. I swore I wouldn't walk this route again, but by now I've forgotten how deceptively hilly it is (shh, don't remind me) and how there were zero volunteers in the Point Pleasant Park last year to offer any sort of encouragement up Cardiac Hill. There were unenthusiastic boy scouts who complained to me about being bored and grunted and pointed in the direction of the race route at each major turn. A huge contrast to the lovely volunteer who screamed at me (in a good way), "YOU EAT HILLS LIKE THIS FOR BREAKFAST!" on a small incline around the 18km mark. Love those people. If you can make me grin when I'm sweating and hungry, you are a god among men.

I'm excited to do the race this time around. Nance's sis and cousin are walking it too, so it'll be an adventure! I'm working up my long walks with no issues. Nance walked 13.5 with me this past Monday (sorry, Nance, thought it was just under 13, but I had miscalculated) and I'm not having any hints of IT band or hip flexor twinges with that distance, so I'll up it again this Sunday even though there's plenty of time to build distance since the race isn't until May 22nd. It's nice to feel like I'm at a point in my life where I have a good base fitness level. Comforting. Exercise makes me healthy in a number of ways: basic health-wise (yay for making lungs and heart work!), but moreso it reminds me that I'm doing what I can to stave off MS as much as possible. I eat well, I sweat well, I take the prescribed disease-modifying drugs, I laugh hard and often… It works for me.

Life is good.

the dog days are over...

Not really, I just like that song.

So, let's get this out of the way. I'm caught in an unpleasant spot and have to pay for my Avonex out of pocket tomorrow. Ouch. Second time. I don't want to get into the ins and outs of my insurance situation on the Internet, but let's just say this hasn't been an entirely fun week in that arena of my life. I wish I had a sense of how beneficial Avonex truly is for me. If I thought there was little risk in skipping a month, I'd happily do it until I have insurance figured out.

I'm of sound mind and body, reason clearly, and work full-time. Still, insurance companies are sketchy about coverage for me because I have this pre-existing condition. The words "multiple sclerosis" raise insurance alarm bells. There's just no way around getting my health underwritten. So. Ouch. Let's move onto happier thoughts and not think about the cost…

In much better news, I'm getting a dog! My very first puppy ever! I can't begin to explain how excited I am about it…her. I love having pets, and while Ringo's a great little companion and seems to have adopted me as his family since I've invaded his home, I really, really want to raise a fuzzy something from scratch again. So, a dog! She's a yellow lab from Greyden Farms in Ontario, where my sweet canine niece is from. I've seen some photos, but not of her specifically. I am EXCITED to have a walking partner (once she's more than three apples high, of course) and motivation to get me off my butt on chilly days when I'd rather stay in.

In other news, I'm heading home to Newfoundland for a week for my mom's 60th bash. It was a bit of a spur-of-the-moment decision but I'm happy about it. I have to work the entire time I'm home, but I'll figure it all out. It'll be good to see my parental units. :)

That's about it. Life's good, minus the insurance bumpiness. I've been snowshoeing bunches and have taken stronger steps to track my protein lately. I've had some concerns about my protein since dropping meat from my diet a year ago, but everything looks good and I easily get within my protein range every day. I'd eventually like to drop seafood completely too, but for now it's still in my diet. Ideally, I'd be vegan, but that's not happening while there's still delicious cheese on this planet. And, now that I realize that many cheeses aren't really even vegetarian, I'm trying to make better choices there too.

C'est tout!

Oh, and I'm going to see Serena Ryder, Melissa Etheridge, Arcade Fire, and U2 this year! Sweet!

Show and tell

Howdy, peoples!

I figured I'd post a few links so you can see the effects of CCSVI treatment in action. I do understand that placebo effect and the power of the mind are mighty, but some of this is truly too remarkable for me to file it under placebo. These results are measurable and observable positive changes following CCSVI surgery. Basic angioplasty. This is a quick sampling I've gathered in a YouTube playlist...there are many, many positive CCSVI videos out there. I hope you take the time to watch one or two of these. The changes in drop foot, balance, speech, and gait are worth a look.  

I don't personally believe that CCSVI is causation. I don't think it's what has created these scleroses in my head. I do think there's some sort of link, though. And if not, how is bettering your blood flow a bad thing again?

Before and after. This woman is a CCSVI advocate and you can see why:

http://www.youtube.com/watch?v=p_b4X-HQ8-I

Before and after (stilettos in the after!):

http://www.youtube.com/watch?v=j1fxofs5o38&feature=related

Before:

http://www.youtube.com/watch?v=pgG_eLpjX4c

After:

http://www.youtube.com/watch?v=4YZhELL__zA&feature=related

Before and after (silent but has captions):

http://www.youtube.com/watch?v=Hn6p9R6fQaY&feature=related

As for me, I'm very well and happy. I'm loving all of this snowy weather and the challenge of conquering a new snowblower. I've been out snowshoeing and I'm hoping to get skiing this weekend! I'm nervous about it, to be honest. I haven't skied in a few years and have no idea if balance will be an issue for me. Keep your fingers crossed!

I am truly fortunate that my health is so stable. I don't want to take it for granted.

Much love!

Farewell, 2010

This has been one of the most emotionally challenging and personally satisfying years of my adult life.

Hm, that's not quite right, is it?

This has been the most personally satisfying year of my life.

Thanks to my friends and family for bringing so much love and laughter into my life. I couldn't ever ask for more than I have right now in this moment. I'm happy, healthy, and surrounded by fantastic, caring people. I am active again. I am joyful. 

2010's been great. Can't wait to see what tomorrow brings.

Happy New Year!

drumroll, please...

I had a doctor's appointment today. Just a routine check-up for a prescription refill. As a footnote to the visit, my doc mentioned that she had my MRI results. I hadn't heard back from my neuro's office, so I wasn't expecting MRI news and had an immediate flutterby in my throat. I'm funny about knowledge; I don't like being on the empty-handed side of it. I want to be the holder and as soon as I'm aware that it's there for the taking, I want it immediately. Those moments before obtaining information about my health (or anything large, for that matter) are excruciating for me.

But my tiny moment of panic was for naught!

My MRI, as reported by the radiologist, included no lesions (plaques, scleroses, exacerbations, flares, whatever you want to call them) on my spine. That means the ones that were there 4 years ago are…gone. (slightly teary-eyed, one moment)

[tiny intermission]

In other good news, I have no apparent signs of new lesions on my brain. That's not to say the old lesions aren't there, but hell yeah that they haven't changed for the worse or made new friends up there!

Also, more yayness - no signs of lesions in other areas such as the brainstem or thoracic spine - where very symptomatic lesions can often be found.

So, that means, assuming the radiologist's interpretation is accurate and the resolution of the MRI is enough to go on, I have no actively enhancing lesions. Everything seems to be +1.

Life is good.