Tingly Feeling http://www.tinglyfeeling.com Adventures in Multiple Sclerosis Tue, 15 May 2012 05:50:21 +0000 en hourly 1 http://wordpress.org/?v=3.1.3 lots of things have been happeninghttp://www.tinglyfeeling.com/general-update/lots-of-things-have-been-happening/ http://www.tinglyfeeling.com/general-update/lots-of-things-have-been-happening/#comments Tue, 15 May 2012 05:50:21 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=424

Life, for one. I don’t often want to talk about my MS, let alone blog about it, anymore. There are too many non-MS things occupying my mind and my time. And there’s not much to say about it, really. It is (still) what it is.

I’ve been fine, for what it’s worth. My right leg still does that thing where the shin’s all numb all the time. And various other parts of me go numb off and on as they please–weather, stress or general health issues permitting. Throw in random fatigue and it’s been status quo on the chronic disease front.

Otherwise, shit’s been cray. I left my job of 5 years back in October to go work for a start-up. Some things I’ve experienced since then: CHAOS. STRESS. PANIC. REGRET.

But also gratitude and enlightenment.

What I’ve learned is that I can take major, life-changing risks, even as someone living with MS. I went through a lot of stress, people. And I survived. I changed health plans. And, although it was supremely irritating trying to get doctors, insurance companies and drug providers to all communicate the same information (they failed, again and again), I survived that too. I know now that I can survive another job change, if things come to that, and that having MS doesn’t mean I have to stay in one place forever. Provided I can still have a career. Ha/Eh/Pfft.

Also, Brag Alert: the Walk MS happened again and my team raised almost $12,000! That’s the most we’ve ever raised in four years. I’m pretty proud of that and hope the money helps a lot of people to live better.

Then I went on vacation and celebrated my birthday in a cabin in the woods. It was quiet and lovely.

Oh, and the boyfriend is still good. There’s more hiking and adventuring and good times on the horizon.

And I’m growing out my bangs. So… Excitement!

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future developmentshttp://www.tinglyfeeling.com/general-update/future-developments/ http://www.tinglyfeeling.com/general-update/future-developments/#comments Tue, 16 Aug 2011 18:36:06 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=415

My sister had her MRI check-up yesterday and they found two new active lesions, one on her cervical spine and another on the left side of her brain. She’s been experiencing spasticity and stiffness on her left side for the past week and exhibited evidence of an attack while she was trying to get up from the MRI slidey-table thing. Her left arm seized up and she couldn’t move it, and then her left leg went stiff, wooden, immobile.

She’s going to go in for a round of steroids to help quell the flare-up and hopefully shrink the new lesions, and then she’s considering switching from Copaxone (her sole drug of choice for 11 years) to Rebif. I don’t know if that’s really necessary, given this is the first flare-up she’s had in a couple of years, but her doctor seems to think it’s worth trying. I guess I can’t really argue with that.

Anyway, I think she will be fine. Fine is a word that keeps evolving to mean different degrees of okay, depending on the day, but we are both “lucky”–inasmuch as anyone with MS can be considered lucky–that our symptoms have been relatively mild thus far. But since she’s got an 8-year (by our Dx dates, anyway) head start on me, it makes me wonder if I’ll be where she is in 7 years. Or maybe I’ll be there next year. No one knows, of course.

The future is murky. So I’m doing my best to live in the now.

The above photo is of Mt. Buckhorn (the middle lump), a 7,000-ft peak in the northern Olympic mountain range. I summited that thing two weekends ago during a weekend backpacking trip where I logged about 24 miles of hiking.

So I guess I’m doing fine.

How are y’all doing?

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here we go againhttp://www.tinglyfeeling.com/quality-life/here-we-go-again/ http://www.tinglyfeeling.com/quality-life/here-we-go-again/#comments Thu, 30 Jun 2011 03:11:31 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=409

Can we talk about the weather? It’s “summer” in Seattle, so it’s a daily topic of discussion and despair. Every year, we lament the quality, or lack thereof, of our springs and summers. Too cold, too rainy, OMG TOO HOT (on the two days out of the year where that actually applies).

For me, though, it’s the topsy-turvy of spring turning into summer that’s the worst. Windy, balmy, sunny!, rainy, cloudy, sunny/cloudy, humid, sprinkly, etc. Not only can I not keep up with the changes, I am physically fatigued by them.

I forget during the cooler months, where the weather is consistently shitty or moderately nice, how these weather patterns affect my MS symptoms.

This week, with its 70-85% humidity and temperatures that barely clear 60 degrees, has been a big reminder. I am exhausted. And for no good reason. That’s how it works, right? And there’ve been a few new/returning numb spots on my legs, too, which is always fun.

I know, as much as I can know anything about my MS symptoms, that it’s probably just the weather fucking with me. This will lift, like the clouds will someday lift to reveal that there really is a sun that shines up there. For now, though, it’s just depressing. I’m sitting on the couch, a lead balloon. I don’t want to make dinner or do any of the other things on my to-do list. I just want to sit and sink in to the upholstery. Or make a Manhattan.

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Stabilityhttp://www.tinglyfeeling.com/symptoms/stability/ http://www.tinglyfeeling.com/symptoms/stability/#comments Wed, 20 Apr 2011 19:46:13 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=401

As a rule, I crave stability. In my job, in my home, in the people I surround myself with. I like a sure thing. Unpredictability, flakiness and variables outside of my control freak me out. Too much open space or free time, which can sound awesome at times, can stress me out. I prefer structure. A schedule of activities. Lists. Things I can plan on. And I don’t like it when people change my plans unexpectedly. I can adapt to change, but I appreciate a heads-up–and really would like to be involved in the decision in the first place.

Multiple Sclerosis obviously throws a huge wrench in my plans. It goes without saying, really, but you can’t plan for MS.

So, even though I know all this, why do I let it bother me so much when my symptoms suddenly act up, like they have this week? I was doing fine. Or as fine as I’m used to, with the ever-present numbness in my right leg and a grab bag of other random, but pretty mild, symptoms. But yesterday, I noticed while taking a shower (shower water is a really great way to discover What’s New in Numbness), that my upper right thigh was also numb. Okay. Whatever. And then throughout the day, I began to notice how numb the back of my left leg was, as well as my left shin. Hold on. That’s not part of the deal. I’m willing to accept Right Leg = Numb, but my left leg is supposed to be the steady one. I can’t have them both acting up on me. It makes walking and standing especially hard.

I wobbled through the day, clinging to and leaning on walls and countertops, staying seated during meetings and generally taking it slow. I hoped (and am still hoping) that this increase in numbness was a side-effect of the start of my Lady Time, but I’m still bothered by it because it’s not typical for my symptoms to get *this* bad in conjunction with my period (TMI? Deal with it.).

Anyway, I should know better than to worry about it. This is what happens with MS. Things change unexpectedly. There doesn’t have to be an explanation or warning signs. It just does what it does. I have no control. I know this to be true.

But three years since my diagnosis, I still resent how flaky this disease can be, like an unwelcome and inconsiderate house guest that invites friends over who drink all your beer, make a mess and stay too long. If it can’t tell me when extra symptoms are going to show up, I wish it could at least tell me how long they plan to stay. Because I really don’t want to feel like this every day forever.

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MS Fatigue 101http://www.tinglyfeeling.com/symptoms/ms-fatigue-101/ http://www.tinglyfeeling.com/symptoms/ms-fatigue-101/#comments Fri, 11 Feb 2011 22:30:43 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=395

Most people with MS have to deal with the crushing fatigue that comes along with it. I like to code-name this fatigue, “the special kind of tired” because it’s really hard to explain it to someone who doesn’t have MS. Everyone gets fatigued–but this is totally different than regular exhaustion that can be attributed to over-exertion or temporary illness like the flu.

You simply wake up with it one morning and then for the rest of the day, you feel as if you’re walking around with weights attached to your limbs. You can get out of breath just bending over to tie your shoes. Holding up your head takes conscious effort. Walking feels like forcing your legs against an ocean current. Standing up from a seated position can make you light headed, as if you’re experiencing vertigo or about to black out. This is especially fun when it happens in a public bathroom stall. Not the kind of place you want to lose your balance, for sure. And, yeah, fatigue makes you feel helpless and depressed. Sometimes I get so tired and frustrated that it’s hard to fight the urge to cry.

So, as you may have guessed, I’m experiencing the special kind of tired today. As I put it in a tweet a few moments ago, I feel like a droopy balloon.

I’ve of course had MS fatigue LOTS over the course of the nearly 3 years since my diagnosis (and probably before then), but I’ve never bothered to look up what it is. So I Googled, and discovered that beyond the fatigue caused by the daily physical challenges of MS, there’s another element to it called “lassitude.”  This is how the National MS Society defines the characteristics of this particular brand of fatigue:

  • Generally occurs on a daily basis
  • May occur early in the morning, even after a restful night’s sleep
  • Tends to worsen as the day progresses
  • Tends to be aggravated by heat and humidity
  • Comes on easily and suddenly
  • Is generally more severe than normal fatigue
  • Is more likely to interfere with daily responsibilities

While I don’t have lassitude (I learned a new word!) on a daily basis, the rest of that list definitely applies to me. Especially the part about how it’s aggravated by heat and humidity, which, for me, can sometimes explain why it comes on so suddenly. Also, some foods, like sugar or wheat, can make my fatigue worse. But I still eat them (pizza! BLTs! yum!).

Of course, like with MS itself, the causes of fatigue are unknown. And treating it is as much of a crap-shoot as treating the rest of this stupid disease. And for anyone who wonders if this is something you can sleep off, the answer is no. Or maybe. Or who knows? The only thing I can be certain about is that MS fatigue is definitely a major drag.

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Music to MRI Byhttp://www.tinglyfeeling.com/general-update/music-to-mri-by/ http://www.tinglyfeeling.com/general-update/music-to-mri-by/#comments Wed, 17 Nov 2010 06:40:47 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=381

Okay, so it’s been a while (again… yarrr), but I wanted to announce that I’m new-lesion-free, hooray! I had my 2nd-annual MRI check-up last week, and my doctor says I’m stable, the drugs are working, and the lesion on my spine (the one that probably caused my original flare-up in late 2007) has faded. And I don’t have to get another MRI for TWO WHOLE YEARS. w00t.

This is my third complete round of MRIs (full spine and brain), but my fifth time in the tube. The first couple times, I think I listened to Andrew Bird and Man Man (LOVE) and probably Morrissey or something else mellow and comforting. This time, for the hour or so I was in that magnetic cocoon thingy, I listened to Brooklyn band Suckers. And it was perfect. The chug-chug-rat-tat-tat MRI noises made every song sound like a bad-ass remix. I wish I could have recorded it, but then, I wasn’t supposed to move and I had an IV in my arm that was bugging me (whatevs).

Anyway, I recommend Suckers’ debut album “Wild Smile” if you’re in the market for music to MRI by (or just because they’re really good).

Got any MRI music recommendations of your own? Tell me!

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going AWOLhttp://www.tinglyfeeling.com/quality-life/going-awol/ http://www.tinglyfeeling.com/quality-life/going-awol/#comments Thu, 16 Sep 2010 02:51:46 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=377

I skipped MS support group tonight. Partially because I had a work thing (booze cruise!) that went later than expected and partly because lately this monthly meeting just hasn’t been feeling very … supportive. For me, anyway.

I don’t know what I’m looking for anymore, really, but the last few months’ meetings have just been sort of depressing for me. We talk about drug treatments a lot. And then someone might share an anecdote about someone who has suffered a massive relapse. That’s not helping me. It’s not my experience and I don’t understand it. And I don’t want to. That’s probably a shitty thing to say, but it’s almost like talking to my mom on the phone, when she starts going off about people I vaguely know who are sick or have some other drama, and then, inevitably, starts complaining about something my dad said to her. It’s her experience, which is totally valid for her, but doesn’t feel relevant to me.

While I like everyone in my group–I’ve been going for two years–and there aren’t any rules about what we can or can’t talk about (and I usually learn a bunch about drugs), I’m still finding it hard to relate and connect in a way that feels valuable. Like, what am I really getting out of my time there? I usually just end up feeling like I’m not doing enough to treat my disease. Like I’m not being proactive enough. Or I feel guilty for not being as bad off as others. Or I get scared by someone’s cautionary tale or bad news and think that maybe something worse is just around the corner for me.

So I had a fun day with my coworkers and didn’t feel like going to support group tonight. I chose to instead enjoy the rainy evening and kick it on my couch, catching up with Daily Show episodes. I apologize if anyone from my group reads this–it has nothing to do with you. You’re all great and I do enjoy seeing you and hearing about how you’re doing. I just decided to ride out a good buzz, rather than harshing my own mellow tonight. I’ll see you next month.

I think I’m going to even take a bath and set my laptop up in the bathroom so I can watch Jon Stewart grill Tony Blair some more. Hope you’re all having a similarly relaxing evening. xo

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meeting and greetinghttp://www.tinglyfeeling.com/ms-support/meeting-and-greeting/ http://www.tinglyfeeling.com/ms-support/meeting-and-greeting/#comments Sun, 29 Aug 2010 20:49:19 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=366

IMG_2587So what’s been going on in the last two months? Well, other than the usual sunshine-feeding frenzy that is a Seattle summer (blink and you’ll miss it), I’ve made some new connections with other MSer-types.

In July, I met a vibrant, athletic woman who’s currently dedicating herself to spreading the word about CCSVI. She’d had the procedure just a week before and regained her ability to make a fist with her right hand and said the numbness in her right leg had gone away. Her doctor was at Georgetown University and works with Dr. Zamboni himself, so it seems she received the best possible care. She still walks using poles for balance and wears one of those WalkAide devices on her calf to help with foot drop on her left side. But she was remarkably optimistic about her treatment and rearing to spread the word–she was spitting mad about the MS Society’s perceived incompetence in studying CCSVI and the pharmaceutical industry’s  and medical community’s reluctance to endorse this treatment. Since then, she started a Tumblr, appropriately titled, I can make a fist, but I haven’t seen any updates yet. I hope she’s still doing well.

Then, last weekend, I attended the MS Society-sponsored Speakeasy at the Cinema event at the Central Cinema. I went with my sister, who I think saw the 5-hour event as more of a bonding opportunity for the two of us, but I was more interested in seeing who else showed up.

It was SO COOL to see a theater full of 40 or so other people with MS who appeared to be close to my own age and social demographic. The speakers–two neurologists and a social worker who focused on love and relationship issues–were pretty good, but what excited me most was the opportunity to talk to others like me. I don’t know why it’s taken me so long to find others “like” me (inasmuch as anyone, let alone people with MS, can be like anyone else). Laziness, maybe? I suppose I’d assumed it would be a lot easier to find groups of young folks with MS in Seattle (it’s the MS capitol of the world, right?), but no one I talked to, from social workers to doctors to support group members, seemed to know of any groups for 20- and 30-somethings. They just referred me to the MS Society, which was a dead end.

So I’m happy to have found these people and hope to meet with them when they get together for coffee or drinks or brunch (I love brunch!). They welcome new members, but cheekily caution, “If you’re a Hallmark©-card persistently “up” cheerleader type person with MS, you need not apply.”

Sounds like my kind of people.

ETA: Another online group worth checking out is the MSPosse (hat tip to Eve Simon for the invite).

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cat’s out of the baghttp://www.tinglyfeeling.com/tmi/cats-out-of-the-bag/ http://www.tinglyfeeling.com/tmi/cats-out-of-the-bag/#comments Sun, 04 Jul 2010 20:56:52 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=361

one for you, one for meSo, I told the guy I’ve been dating about my MS. I’ll skip the details of exactly how it came up, but we were driving back from a wedding in Portland last Sunday and the opportunity just presented itself.

When my window appeared, I chewed the inside of my cheek for a bit, struggling over whether I should take advantage of this clear and fleeting opening. As I have no poker face, he noticed my obvious consternation and asked what was on my mind. So I came clean.

He took it surprisingly well–saying all these mature, unselfish, caring things. Reassuring me that he wouldn’t find me any less attractive, explaining that he understands this disease isn’t me and I’m not “damaged goods,” it’s just something that happened to me, and asking me to not keep anything like this from him again. But he still understood why I hadn’t told him before, although he said he’d had his suspicions, but didn’t want to pry. So it wasn’t too much of a shock for him.

I’m a bit in shock, though. I still can’t believe I told him, after all this build-up and stress over when would be the right time. Sure, it’s like a weight’s been lifted, but now that I don’t have to hide my MS anymore, I feel almost like something’s missing. Like there’s something I’m forgetting to do. I’m still not comfortable letting him in on the minutia of my daily symptoms and I’m not planning on letting him watch me inject my Avonex anytime soon–so my shot schedule is still a bit in flux–but at least I don’t have to sneak around anymore, or pretend like everything’s fine when it’s not.

For a few days after I told him, I felt like my disclosure would enable our relationship could get deeper as I was now able to share everything with him. I felt so secure and was surprised that I didn’t feel the paranoia I’d expected to set in as soon as those words, “I have MS,” slipped through my lips.

A week later, the paranoia is creeping in. For whatever hair-brained reason, all the good and comforting things he said to me, and the amazing way he’s treated me in general, don’t still my whirring thoughts. I worry that this is going to become an elephant in the room–an elephant with an occasional limp–and something he’s watching out for, searching for signs of weakness. I worry that he’ll tire of being with someone who has so many potential physical variables in her life. A girlfriend with an asterisk:

Brand-New Girlfriend!*

*May contain debilitating and unpredictable chronic condition

Of course, I know these concerns are just products of my own mind. He even told me that he still expects us to do all the things that we’d planned on doing this summer–and that whether we’re biking or backpacking or brunching, I shouldn’t worry about holding him back. Because the experiences we have aren’t about him having a good time, he said, but about us having a good time together. (I know, right? This dude is good.)

It’s just that my girl-brain, terrified of screwing up this relationship with my insecurities and chronic foot-in-mouth syndrome, is mixing it up with my fear of MS. But, since I’m smart enough (heh) to recognize that, I’m trying to talk myself out of this state of mind. I suppose I need to get used to the idea that this is something that I’m sort of expected to share with someone else now, after pretty much taking care of it on my own for more than two years. We’ll see what happens, I guess. Hopefully good things.

Oh, and Happy Fourth of July. I hope you’re all safe and sound, lighting off firecrackers or at a BBQ somewhere. xo

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drug vacationhttp://www.tinglyfeeling.com/ms-drugs/drug-vacation/ http://www.tinglyfeeling.com/ms-drugs/drug-vacation/#comments Sun, 30 May 2010 03:25:53 +0000 tinglyfeeling http://www.tinglyfeeling.com/?p=349

magical coastHi. Hello. Been awhile. I’m still here, it’s just that the rest of my life–the non-MS part–has sort of taken over. But that’s good, right?

Part of the reason I’ve been able to focus on the normal side of things is that I’d been off the drugs for about a month due to an insurance SNAFU. My employer’s Aetna plan now covers Avonex, which means that I can’t get the same level of assistance I’d enjoyed for the past two years (FREE DRUGS) and have to deal with copays and deductibles like everyone else. Suck.

And of course, it took everyone involved, from Biogen/MS Active Support to Aetna’s Specialty Pharmacy to my doctor’s office, FOREVER to figure out what it was they were supposed to be doing. But even when they seemed to know what their next step was, they. wouldn’t. take it. Not without me calling them to check in. So I was doing a lot of policing and freaking out, all the while reminding them that I was either low on drugs, or out.

Now everything seems to be taken care of, fortunately. I did my first shot since April 30 last night. I was worried about amplified side effects because of the break, but they’ve been okay. I just feel sort of hungover, achey and a little hot ‘n’ hazy. You know, “flu-like symptoms.” I know it will pass.

During the last three weeks, I realized that the one thing that really ties me to this life of MS, other than my symptoms, which I can always feel, but no one can really see, is my weekly dose of Avonex. I know it’s just once a week, and that’s much easier than a daily dose of Copaxone or 3x-a-week Rebif, but coordinating my non-MS schedule with my Avonex schedule can still be tricky. Especially if there’s someone I don’t want to know about this part of my life yet.

obvious box is obviousAlso, could the packaging Aetna sends the 1-month supply of Avonex in be any less discreet? Seriously. Why not put a bright orange sticker next to the green one that says “DRUGS INSIDE.” Plus, you can’t recycle these containers in WA state. Boo-urns.

Anyway. That’s part of what’s been going on. Work’s been insane, as usual, but I also took a road trip to Northern California Redwoods country and man–the air there must be magic. I felt so good the whole time I was there, even though it was overcast and in the 50s. Then I came back to Seattle, where it’s still winter, and BAM. Symptoms got all cranky again. Although, now that I’ve been back a couple weeks, my body has adjusted to the gloom. So now I’m bracing myself for sun (assuming we can still get that in Seattle). Effing weather. It never ends.

So, sorry for the long lull. I hope all of you are doing well and having a fantastic Memorial Day Weekend. xoxo

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