Tuesday, March 3, 2015

What Do YOU Do All Day? (Day +49, For Old Times' Sake)

I am the fat kid making fun of himself before anyone else does. Which I am pretty sure is not PC to say anymore, reference to fun or fat or kid (not to mention that for some sexist reason I feel even wronger writing "fat kid making fun of herself"), but here I am in the hair essentials aisle at Target having found myself in a fugue state staring at shampoo. What? Oh, yeah.
Not pictured: Target Team Member stocking the shelves who seemed unsure if he should ask if I needed any help. Ma'am? Do you need me to take that picture of you standing in front of the hair essentials aisle looking lost? Nah, I'm good, thanks.

(I realize nobody else cares that I am bald but me, but still I will tell you this: sometimes while sleeping I move my head and feel what I think is a hair tie that I forgot to take out, something bunching uncomfortably, pulling. Like a phantom limb, I have phantom hair, and yes, it gets stuck in my lipgloss, too.)

The good news is that my family now has a jumbo vat of Krazy Glue lest we find ourselves needing to put things back together again, a boatload of AA batteries (buttload seems so very wrong in that context, make that any context), plus a jumbo pack of light bulbs featuring the wrong size base. What do you do all day? people ask me, mainly Bryan, who wants to know what I do when they leave the house for school and work. So I point to the cabinet where we now have enough toilet paper to see us through a month's worth of bad curry, back stock of Windex, Tilex and something that makes our laundry smell the most laundriest, then I show him how I organized my sweaters. When that does not seem to impress him enough I send him this video of Ike and Cinque loving each other to the sweet sounds of brown chicken brown cow, because nothing says raison d'être like making a video of feline foreplay. And then watching it too many times to be socially acceptable.
Do you feel the slightest bit duped right now? As if making a video of your cats getting it on isn't bad enough, watching a video of someone else's cats getting it on is pretty much the lowest of the low. Sorry.

But the worst was when I was at Target yesterday and realized I had left my Fitbit at home. Because WTF is the purpose of walking if I don't get any credit for it? I told Bryan about this travesty later and he asked me what kind of credit I got, like credit points toward something? I wanted to bite him on the neck like Ike bites Cinque, shake him around a bit, because I'm talking about credit for personal glory, duh. I ordered a Fitbit when I got back from Tel Aviv to monitor my activity, egging myself on to walk more, do more, be more. So far I am up to 10,000 steps per day which is not a lot a lot, but is a lot if you just had chemo. Which I did. Oh also, I'm bald, in case you forgot.

So that's what I do all day. Specifically, here is what I will do today:
Water plants
Buy light bulb (again)

Which might make me feel fruitless, the banality of it all, though, quite frankly, I don't believe one can put a price on infusing my family's laundry with the lasting boost of the fresh, sun-kissed scent of early spring. But if I did? Feel ineffective? I could remind myself of this: I used to work with this woman who has since moved to another state. I am still Facebook friends with her, and she messaged me the other day to tell me that she now works with another woman who has MS. She told her coworker about my blog and after reading it and researching the treatment, this woman is now scheduled to go to Russia for her own autologous hematopoietic stem cell transplant. The feeling I have is indescribable, though I suppose it would be correct to say it also gives me the lasting boost of the fresh, sun-kissed scent of early spring. Not to be flippant, but yeah. Hearing this makes me feel alive, as if what I am doing makes a difference not only to me and my family, but to someone else. Super bonus credit points that Fitbit does not yet capture or pay out but it's there, baby steps but steps nonetheless, one step toward ending MS. 

That's what I do all day.

p.s. If you or anyone you know has any questions for me about HSCT, feel free to email me.


Nancy Fastenau said...

I have told several people that have or know someone that has MS about your blog. Not sure if they ever followed up but I believe is spreading the word, regardless. That's a great mission. Have you made the video yet?

Anonymous said...

There was a great article in the dailymail.uk the other day about stem cell & MS and they had several women who successfully reported on it. I have to search that now....here it is. These women are already ahead of you in their treatment phases, Susannah.http://www.dailymail.co.uk/news/article-2974675/MS-stem-cell-treatment-hailed-miraculous-patients-make-dramatic-recovery.html

Like Nancy said, you should make an infomercial video as whom to contact, where to go, treatment expectations, cost etc. etc. I am sure it will be helpful to other sufferers who seek alternative treatments outside of the United States. You're so good at it too!!

Petunia Face said...

I saw that article! It's in the Daily Mail, as well as Canadian print and a few European news outlets. The treatment is definitely gaining momentum! Makes me so so happy!

Not sure what video we are talking about--one where I talk about the treatment? I am more than happy to write about it, but I am no medical practitioner and certainly not an on-air personality. More of a behind the words-type person. But maybe...whatever it takes to get the word out. :)

Aaron Grover said...

10,000 steps is a lot of steps. I would even say that it is a buttload. Especially after chemo. Good job, keep at it

Anonymous said...

I meant a video more in terms of information. Let's say if I had MS and was looking for alternative treatments, I'd roam the internet to find as much as possible. If I would see a video of you explaining why you chose this particular treatment, whom you first contacted (in Israel), how much it would cost for the procedure and the stay....things like that. Also what to take, what to expect etc. etc.

I know you could write about it here on your blog, but people do use youtube a lot to get info and I am sure it could be helpful to get such valuable information first hand. Just a suggestion, no pressure :-)))

Chin-up Ximena said...

Hey !! Afraid this might get a bit long. I apologize beforehand .. Lol. But I think I deserve the right of a long comment. I found out about your blog maybe last month. And read it from the beginning (yes, I'm also a Virgo). You've made me laugh out loud, roll my eyes, shed a tear or two, look at weird pictures and videos. When I started reading your blog, I didn't know you were dx with MS. So it broke my heart when I read about it. I'm also in the HSCT group, so maybe we've crossed paths somehow. I'm going to Moscow in two weeks. Glad my doctor isn't Nadir, lol. Anyway, keep writing, even if sometimes you get all dark on us. I thought many times on leaving comments on old posts, but then that might have annoyed you. All the best and take each day at a time. :)

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