So 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 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
Hi. 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.
Also, 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
The video from the NMSS Greater Northwest Chapter’s “Try on MS” event at Pacific Place during MS Awareness Week last month is up. Check it out:
I brought a few co-workers to the event and they were all really good sports, trying on the rubber gloves, foggy glasses, diving flippers, etc., to simulate MS symptoms. One of my co-workers makes a couple of cameos in the video–and I’m relieved to report that while my face appears in it (hi!), I’m not quoted at all. I signed the video release form, but later had second thoughts about potentially outing myself to a much broader audience. So. Bullet = dodged.
Regardless of my own inhibitions, events and videos like this are really important for helping people to understand what living with MS every day is like for so many people. For me, my daily grab-bag of symptoms includes the tingly, pins-and-needles feeling in my legs and upper back, tightening, or spasticity, in my torso and numbness on the bottom of my feet that makes it feel like I’m walking around on couch cushions. Oh, and the occasional foot drop/floppiness. And the hot-oil-in-my-veins sensation has been making guest appearances lately, but that one’s not represented in the video. Just a hunch, but passersby at the mall probably wouldn’t enjoy having hot, viscous liquids poured on them.
Oh, and hello again. I’ve been MIA from the blog for a while. I’ll post a more comprehensive update soon, but nutshell-wise, there was my 2nd MS-iversary on March 26, the Seattle Walk MS on April 11 (where my team raised $8,500+!), taxes (boo-urns), my birthday a week later and now work, work, work. But it’s spring again. Mostly. Seattle spring weather is wack-a-doo, but the sun is trying really hard to stick around. I even got to ride my bike into work today for the first time since fall. I’m super excited to get back into that (and into shape) again–although the impending all-uphill ride home this evening is scaring me a little. My bitchy right leg is telling me I should walk home instead of ride, but it can STFU.
As I’ve mentioned before, this blog is anonymous. I keep it that way so if someone Googles for my name (hey, it could happen), they aren’t confronted with THE TRUTH ABOUT ME. I worry what they’ll think, how they might react, whether they’ll still be able to think of me as who I am and not what I have.
(I’m sure someone could figure out the true identity of Tingly Feeling if they really wanted to, but I’d hope people have better things to do with their time.)
My close friends and some trusted co-workers know about my multiple sclerosis (those words are still so hard to spell out!), but I conceal it from more casual acquaintances and colleagues. It’s a tricky balancing act, keeping my MS a secret from some people while disclosing to others. It’s getting harder and harder to keep the two sides of my life separated, especially with my participation as a team captain in the upcoming MS Walk.
So I just got off the phone with my mom, who doesn’t really understand how I feel about all this. (She’s the person who’d told our whole family about my MS not even 24 hours after my diagnosis, after all.) I sensed a judgmental tone in her voice when she asked if a guy I’ve recently started seeing would be participating in the MS Walk with me and my team in April. He does not know I have MS. He knows about the Walk, but will be out of town, I told her. And then I told her that when I’d explained to him why I was leading a team for the Walk for the second consecutive year, I gave my sister’s MS as the reason.
“That’s beating around the bush,” said my mom.
True. I’ll give her that. But I’m not ready to have that conversation with him yet. Everything is too new and good. Why complicate things by telling him, “Oh, by the way, while you’re deciding whether you like me enough to keep me around as a girlfriend, let me tell you about my chronic and potentially debilitating disease.”?
Mmm. That’s some good pillow talk, right there. For now, I want him to like me–or not like me–for me, and not base his decision on this total buzz-kill of a revelation.
But I’m not naive. I know I can’t put this conversation off forever and that anyone I date for a significant amount of time deserves to know about my MS. I’m just not there yet. And I’m still figuring out the duration of that “significant” time period. I have no idea how this works–it’s my first time dealing with this. I’ll be honest with him when the time is right, I guess, and hopefully he’ll understand why I felt I couldn’t tell him immediately. And hopefully he’ll stick around.
It’s only been two years since my diagnosis and I know I can’t keep up this facade forever–it’s bound to crumble eventually. Leading a double life is complicated and exhausting and I don’t like being dishonest with people I care about. But for now, I hope that my friends and family can respect my choice to protect myself from scrutiny and rejection.
It looks like the health care reform bill is going to pass and it’s about effing time. I’m watching/listening to the live stream of the health care reform debate on C-SPAN right now–Pelosi has the floor, wrapping up a long day of speechifying and mudslinging.
For the Republicans who continue to bash the bill, STFU already. You keep saying that “Americans” don’t want this bill. Know what? I’m an American. And I want health reform.
Here are just a few reasons why:
I have MS. (duh)
My really expensive disease-modifying drugs are not covered on my employer’s prescription plan. Luckily, the drug manufacturer has provided my medication to me for free for the last two years. My time in that program is up in April, though, and I’m hoping they’ll reinstate me because my employer’s health plan still doesn’t cover my drugs.
MRIs and other tests I have to get once a year to monitor whether the drugs are working/my MS has progressed, are really expensive. My employer’s plan only pays for 80% of those costs. I am in debt to some bank I’ve never heard of because the hospital only offers a three-month payment plan.
Under the current health care and health insurance system, I would not be able to obtain health coverage on an individual plan because I have a pre-existing condition. Someday I might like to leave my job for something better. That might include being a freelance consultant, or working for a start-up with an uncertain future. So I’m stuck in my current job unless something really, really stable comes along.
I know those are pretty personal, self-serving reasons, but my health is personal. (And as long as I’m with my current employer, reasons 2 and 3 probably won’t change anyway.)
I really want to be able to say that our country cares more about its people than money and profit. So far, that hasn’t appeared to be the case. It’s really disheartening to see all those tea baggers, Sarah Palins and Glenn Becks spreading lies and hateful rhetoric, claiming that they speak for the “American people.”
Maybe the vast majority of the American people have been lucky enough to avoid illness, unemployment and crippling debt caused by a family health crisis, but I doubt it. While we can say that everyone probably knows someone with MS, we can also say that we know someone who’s struggled with health costs, has been denied or lost individual coverage for some reason or has needed emergency care they couldn’t pay for. Living in Seattle, it’s no surprise that I’ve been to more than one benefit show for uninsured musicians who’ve found themselves in the hospital with no way to pay for it.
So, it is truly a historic day for our country. No, the bill isn’t perfect, but it’s a much-needed step in the right direction.
However, I am disappointed that President Obama compromised with non-uterus-having Bart Stupak on federal dollars being used for abortions in order to secure his vote. Last time I checked, abortion is still legal in this country.
Or, at least, it’s the Tingly Feeling theme song. “Pins and Needles,” by Project Jenny, Project Jan, (featuring Fujiya and Miyagi) actually makes paresthesia (which, FYI, sucks) sound sexy. A friend of mine put this on his January mix for our Mixtape Club (nerd alert) and every time I hear it, it makes me so [...]
This MS road show, dubbed “Try On MS” by the Greater Washington chapter of the MS Society, is coming to Pacific Place in downtown Seattle. They’ll be at the 6th and Pine entrance on March 9, from 11am to 2pm and I’m going to check it out–and drag a few co-workers and friends along with me.
As if having MS wasn’t bad enough, I’ve been losing weight over the last 6-9 months and I don’t know why. I just read that this could be a side effect of the drug I inject weekly, Avonex, which has been known to cause thyroid problems (awesome): Some people taking AVONEX® develop changes in the [...]
This whole business with the MS originated in my lower right leg. The numbness mostly affects my mid-to-outer shin and wraps around to stop in the middle of my calf. Tapping the skin there just feels like a dull thudding. I’ve come to accept these symptoms as the norm. It is what it is. But lately, the leg has been bothering me more.
So 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.
So, 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.
Hi. 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?
Also, 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.
As I’ve mentioned before, this blog is anonymous. I keep it that way so if someone Googles for my name (hey, it could happen), they aren’t confronted with THE TRUTH ABOUT ME. I worry what they’ll think, how they might react, whether they’ll still be able to think of me as who I am and not what I have.