Let’s dance… the last dance…

Yep, I’m making this the last one for now, so I can get my life back. I have almost twice the auction items from last year, so it promises to be HUGE! I want to hit this one out of the park!

Please pass this on and help me make it big…. let’s swing for a cure!

Dance MS #4!!

Dance MS #4!!


Soooo often… I talk to people who are overwhelmed… can’t take care of their health, their exercise, their sleep, whathaveyou… but they tell me that “hopefully things will calm down in the next few months”.

Will they? What are you actively doing so that things WILL calm down?

Because really… snowballs are snowballs. Entropy happens. Life does not magically calm down on its own. If you give a mouse a cookie… right?

If you reluctantly say yes to overtime, but never push back, it will be expected of you.

If you keep denying your body of the exercise it needs, it will just keep getting weaker, and you’ll have a worse starting point.

“But it’s not that easy.” I know, It’s not easy for any of us. But if you truly want to change, it really is that simple… you have to take charge of not moving in the same direction. Things don’t calm down on their own…


I’m here to talk about a health issue…

Not MS, this time. One that doesn’t really get discussed… but should. I’m talking about certain women’s health issues.

I was in a doctor’s office about a week ago, waiting and flipping through a People magazine (seeing names that I didn’t recognize, for the most part) and found a short article on…an American actress (one I’d actually heard of! but I’ve since forgotten whom) who struggled with uterine fibroids. The fibroids were surgically removed, and her life went on, but she made a point to publicly talk about them — a condition that no one ever brings up. After all, it’s a “women’s problem” that can cause “excessive bleeding”. No one wants to talk about that.

But what about when the bleeding becomes extreme? In combination with a lot of pelvic pain? (Fibroids may also interfere with ability to conceive a child, which I was not trying — but I had a very low likelihood of a safe pregnancy, had I wanted…)

Anyway, yes, this was an issue I dealt with, as well. I had three large uterine fibroids that were rapidly growing bigger in my late 30’s — and several smaller ones, I was told — but I kept ignoring them, because I had the little niggling thought: I didn’t really want children, but what about that 0.001% chance that I’d have regrets in the future? (And all existing fibroid treatments, at the time, eliminated all future ability to conceive.)

Well, you know what? I ignored by issue for too long. Long enough that I bled for 20+ days at one point… ladies, having a heavy period for over 20 days, not something you’d want to experience, no? Leaving the house wasn’t really an option (heavy bleeding/inconvenience), and toward the end of that time, I’d just had so much blood loss that my body couldn’t handle it anymore.

In terms of “awareness”, I want everyone to know that this isn’t just a problem of inconvenience, but this can be life-threatening. I don’t remember how many days I’d been bleeding at that point, but after two days of basically no sleep (blood pouring constantly out of me, so I had to be in the bathroom all night), my husband figured I warranted and ER visit when I could no longer walk a straight line.

At that point… yep, no more uterus, and a few liters of blood transfused. (I am grateful for those of you who donate blood! I am a common blood type, but still… thank you!) After not too long, I couldn’t even sit up without fainting.

So, if you have uterine fibroids, don’t ignore them. If you think you may, PLEASE start a conversation with your doctor and get them removed sooner rather than later. (When I was in the ER at that point, mine were so big that a hysterectomy was the only solution.) And… if you think your periods are “unusually heavy”, this is something to also get checked out. Please, for your health…


land(fill) ho!

21Aug16

So, I recently started doing Rebif injections for my MS, again.

Previously, I used an autoinjector-device, so that I wouldn’t have to slowly push the syringe myself. It’s an acidic medication that stings, so the act of pushing a button that “flings it into me” was a lot more palatable. It was a spring-loaded device into which I loaded a fresh syringe each time I dosed myself.

I figured I’d do that again… and requested the autoinjector option, rather than individual syringes.

This time, it’s different. (or, it seems, they gave me the newer “rebidose” option.)

The syringes come in their own disposable autoinjector. That’s right — I inject three times a week, and each time, I throw away a large delivery mechanism along with it. And since it’s biohazardous sharps waste — luckily, I don’t have to pay for its disposal, but I’m sure someone, somewhere, has to pay the extra fee for it.

Holy landfill!!!😮

These are the options that I’m talking about. Previously, I could reuse the injector, the delivery device, and I just threw out smaller syringes.

Based on the website, it seems that the reusable autoinjector is still available. I think I still have my old one… I have a month of these disposable ones, so I’m going to use them (they’d get thrown out, anyway) — but when I’m done, I’m going to ask for syringes to use with my old autoinjector!! There’s enough waste in this world, right?


home t

18Aug16

Have you seen these? I actually saw them all over the place on my last vacation:

The Home T

I just opened up my package (no, I have not suddenly decided that Washington is “my home”; it’s a donation for my auction) and they’re right… these t-shirts are soft!

I post about this here especially because this company — which was apparently featured on Shark Tank — donates 10% of its profits to MS research. So… if you love your home state, buy a t-shirt and support our cause!

Spread the word! (They also have long-sleeve t-shirts, blankets…)


going back.

15Aug16

So… I’m in the process of restarting Rebif. Yeah, I though I’d sworn off injections, too.

Gilenya was destroying my immune system… 6? or was it 7? upper respiratory infections this year, and my white cell count was consistently low. I finally said NO MORE earlier this summer… and decided to go drug-free during my summer trip. (I could’ve done another one-month bottle of Gilenya, at no cost to me. But I wanted, also, to rebuild my immunity when going someplace new.)

Now that I’ve been back a few days, I’ve been making all the arrangements for new prescriptions, delivery of refrigerated meds, etc. Once again, thinking of foreign travel while carrying syringes. Yeah, I know a lot of people do it (diabetics/insulin), but I was hoping that one of the orals would work out for me, in terms of overall convenience.

I learned a lot in my first round of Rebif… not only about injecting (which is less of a deal than you’d think) but also self-advocacy.

We’ll see how it goes….


Dance MS round 4 is coming up! (Poster will be… posted… forthcoming.)

But while traveling… and putting a lot of work into the fundraiser while traveling (not to mention my online work)… I’ve decided this will be it. Maybe Dance MS will come back at some point. But not in 2017, or at least not with the auction.

I have had many disappointments this year. The MS Society — the key beneficiary of the event — continues to disappoint with their “help” consisting of giving me merely their ideas of local volunteer organizations. It struck me, just a few months ago, that while they are always impressed by the work I do, that none of them have ever attended by event, despite two months’ notice each time. (So, why make them my main beneficiary? Name recognition. Donors will give to the MS Society with no question, whereas if I find a random research lab… it won’t generate so much attention.)

NB: I’ve been trying to place more of my personal focus on other chapters. I did Walk MS this April in Wenatchee, which was still the Northwest chapter, but I may try to find a 2017 Walk MS in another chapter. Maybe they aren’t any better organized, who knows…

Anyway… I’ve struggled to find even day-of volunteers, aside from 3-4 doting friends (one of whom may be playing in the band at the event). One of those situations where I wish I could clone myself to take care of multiple things at the same time. I’m having a hard time getting people to post the flyer on their facebook page…

So, yeah, it’s come down to a one-person show again despite my reaching out to even more channels (many of the volunteer meetup groups I’ve tried have told me that since it’s not for the homeless or education, it’s not something they support. It’s VOLUNTEER, it’s COMMUNITY!!)

I’ll be posting the flyer in a few days… so if you’re in Seattle or know anyone in Seattle, please spread the word! I was nearly filled to capacity last year, and I have a bit more space this year. I’d love to go out with my heart full…




Follow

Get every new post delivered to your Inbox.

Join 225 other followers