Friday, 4 April 2014

hugs, drugs, and other things

tl;dr All is mostly well. I'm off of Avonex for a bit. And I'm okay with that.

Since we last tuned in, dogface had knee surgery #3. It's been a tough 11 months for her and for us. Mostly just the emotional toll it takes on us to see her hurting and then to rehab her back only to have another injury. I won't say it was a financial picnic either, but in the end, as my dear friend Brian says, "you can't tickle a Nissan Rogue under the chin". We're all good now and she's cleared for any and all exercise. Her knees are stronger than they ever were so it's just a matter of working her back into shape gradually. We made sure to keep her as lean as we could during recovery so she's at a nice, healthy weight. It's hard to ever think of an English lab as "lean" but she has a nice tuck and trim, so she's at conformation standards.. We're up to around an hour and a half of leash walking a day...barring sidewalks with lucky loonie ice rink conditions. We're both benefiting from the walks!

I haven't updated in a while and tend to update with the good and cheery, so I thought I'd post right now as I've been symptomatic and unhappy about it. It's nothing that interferes with life, but I have what is often given the cutesy name, the MS hug. The reality is not a soft, warm embrace. At times it feels like I'm having what I imagine the beginnings of a heart attack heel like, except nowhere near my heart. The left half of my torso and the right side of my back is being gripped by a giant hand, a rubber band, a girdle, a boa constrictor, a get the idea. Most of the time, I feel like I can't catch a full breath. The hug is from lesion or other abnormal activity in my central nervous system causing a spasm of the intercostal muscles (those thingies that hold the ribs together). The thing with MS is those muscles may or may not be in spasm but my central nervous system damage makes the rest of my body think they are. Bummer. 

It's not life threatening. It doesn't affect my functioning and it's not of the vision, bowel/bladder, mobility, cognitive factors that constitute a neuro appointment. It's still a bitch, though, and it takes a toll on my mood. It also makes extended walking uncomfortable, as if I'm wearing a shirt that's far too small for me. Sometimes sitting still feels pretty icky. Through trial and error, I've found that wearing a sport tank helps - the grip to my body makes the other gripping sensation less noticeable. Otherwise, I'm well. I thought it might be a pseudoexacerbation since I feel so well aside from this blasted chest weirdness, but I'm not sure since it has been going on for a few weeks. 

So far my plan of attack includes rest, moving my ass around the nearest 5km or so on a regular basis - as gross as it feels, staying cool (winter in NB, so this is pretty easy), keeping stress at bay, and putting it out of my head in a "stop worrying" way rather than one of denial. Sometimes a plan of attack doesn't make a damn difference. 

[Note: I wrote the previous paragraphs 3 weeks ago and the hug is more off than on now. I'll take it!]

As always, Nance has been incredibly supportive - letting me whine, but knowing that I don't want to dwell on it. I'm ever a silver lining type of person and never want to lose that. Exercise helps. Meditation helps. Writing helps. 

I had an appointment with my family doc since writing that bit about the hug. I'm not interested in steroid therapy for my symptoms because of the risks of osteoporosis (and I consume little dairy), so there's nothing she can do to help. Still good to have on a chart for reference, though.

It's that time of year again when I reapply for special authorization for Blue Cross to approve of my DMD, Avonex. I sent off the form to my neuro's office early May and found out this week that I've been denied. Bastids. 

In the time it took to find out, I ran out of the drug and I didn't pay out of pocket this time. I've been researching and tinkering with the idea of going off of Avonex for quite some time, and this opportunity arose organically, so I took it. I'm considering applying to the province for coverage. Historically, they turn me down too. It's a bit of a nuisance to apply to the gov since I'm self employed so they need my tax information for the last three years plus a record of liquid assets and a handful of other info. I truly have no idea how people with less access to resources manage the paperwork.

Okay, that's enough. I don't have it in me to write a total bummer post, so the positives:

I am off of Avonex. Since that happened I'm far less irritable on a day-to-day basis. Coincidence? Likely. Interesting, though.

I am getting back into meditation and loving the mindfulness it brings. 

Mom's coming! My mom and step-dad are visiting over Easter and it'll be the first time since I moved here in 09. They've never been in my house, so it's a warm idea that they will be able to picture my home when I talk to them from now on. They're staying with my brother but he's only a hop, skip, and 4 jumps over the bridge (totally different from jumps off the bridge). I'm looking forward to seeing them. We (Nance and I) don't celebrate Easter but we did as a family when I was young, so I imagine we'll at least do a holiday meal. Perhaps a certain bunny may pay a visit.

Tangent: My favourite Easter memory is getting up early one Easter morning, hugging a pink bunny that was waiting on the couch, and turning on the TV to watch Godzilla in my jammies until everyone else woke up.

In other news, the plans for a summer family reunion seem to be shaping up. 44 yeas so far, I think. Not sure how many nays. I'm banking on being home before the reunion to do some of the east coast for camping/hiking. Doggins should be ready for that kind of activity by then. I certainly will be! 

That's all for now. If you see Mother Nature, send her my regards and tell her she's been overgenerous with the white blanketing here in NB. Today's +6 was much appreciated. She's welcome to cancel tomorrow's snow.

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