SPOON UPDATE and names have been changed to protect the innocent (heavy swearing)

15 Oct

I wrote a post the other day about a thing called The Spoon Theory.  It is a wonderful way a fellow sufferer of An Invisible Disease helped her friend understand what she goes through on a daily basis.

Today – get this – my buddy (who is a fucking MS train wreck read this as proof) sent me this picture:

With this explanation:

“No shit. Walking the dog this morning, I glimpsed this laying in our yard. Not ours. No idea where it came from. But if I were religious I’d light a fucking candle for Our Lady of Multiple Sclerosi. Or whatever. Not a care pkg, but pretty impressive.  And if you are starting Copaxone they have a $ assistance program to limit cost to pts to $35/ mo. Let me know if you need/want info.  I can’t thumb-type.  Love and love, t”


and now

(the) Official Minutes of the Swearing Like Sailors Email MS Support Group 
Three Crazy Ladies with MS Lose then Help One Another Find Mind(s)
  • Crazy lady #1  ladies – i am fucking losing my mind. xo a
  • Crazy lady #2 Whats going on? Because the usual FUCKING BULLSHIT?
  • CL 1 – yes – oral steroids not working, no insurance that will cover this, stupid new neurologist, tired, angry, can’t type for shit because my fingers hurt so badly, laying on the couch with prednisone hot flashes and in the dumps. this started as an okay day – just struggling with accepting my disease. i honestly don’t know if i have ever accepted it or believed it. i have been doing so well for so long now this for the last three weeks and no relief. i am not used to this not being able to do what it is i want to do – get up, get out, concentrate, research, write, etc. i am feeling worthless right now. i know this will pass but have to vent.  Maybe it is time to fire up naked axon idea again…..post the shit out of this disease – I’ll give it three Montels and raise you a terri garr!
  • CL2  It sucks and you should be angry. it’s totally not fair at all. In fact, as crazy as it sounds I sometimes think that our re-lapsive -remitting is tougher because we aren’t wheeling around. We are always fighting an invisible war. We never stop fighting, even when we are feeling great.It could creep up at ANY moment. Our MS does NOT DEFINE us.    Get a tape recorder.  Talk about all this shit and type it later.   If you need a tape recorder and some more drugs..let me know.
  • Crazy Lady #3 Am running around like a madwoman right now. After being in bed for two weeks with no definable anything. Just no will, no ability to get up. And I’m not sure what’s motivating me right now, but I suspect it might be vengeance. I am pissed off. And I am pissed off for you. Now I must throw children in minivan and tear around town. (Have been so tired that we don’t even have food for lunches for school, so now I have to go buy them some shitty food and take it to school for them.)  All this is just to say: yes. And love.
  • CL1  I love being in bed for no reason. Are you coming around? What crap did you shove down your kids pie holes today? Pringles, Mt. Dew and ringdings? You know what, this disease sucks major ass. My tools are busted – my brain feels like disorganized shit and my fingers are killing me. The tape recording thing has crossed my mind. I also consider video. Daily entries about ass sucking MS. Tips on how to cope (copious tears followed by bouts ofvengeance enabling me to kick a load of laundry’s ass hole, naps) comparisons of the market’s top Rascals, insurance nightmares, neurotic OCD neurologists. Heres something that may make you laugh. I posted this last week after first seeing my new, creep-city neurologist :  (Neurologist’s Office: The First Visit)
    • Dr. Rosenthal (writing): “Do you have any problems with your eyes?”
      Me (seated – table): “Not yet.”
      Dr. Rosenthal (writing): “Do you have any problems with bladder, bowel control?”
      Me: “Not yet.”
      Dr. Rosenthal (Removes glasses, looks up): “You really shouldn’t be so fatalistic. Any problems swallowing?”
      Me (Pausing): “No.”

  • CL3   That was one of favorite posts lately. Perhaps of all time. It conveys so much, with beautiful word conservation. God… you are a writer!  And perhaps old, if you are consider “tape” recording…. (Brilliant, though, really.) I: “sob.” [Repeat for 55 minutes.] Somewhere in the sobbing I complained about not even having milk in the house for my children to have cereal for breakfast. At the end, she said, “You know, if you can’t go to the grocery store with peace in your heart, you may as well buy the milk with vengeance.” Thus, I have accomplished much in the past 6 days.  My kids had Lunchables today. Jeebus. They thought I was the Best Mom Ever.  Fuck [fill in the blank]. (MS, insurance, neurology, milk, being in bed, not being in bed, neuropathy… etc, ad nauseum.)  I hope you get another load of laundry done tomorrow. Or maybe not.  xo (infinity). Seriously.
  • CL1  just got some MRI shit back and here’s the great news: I have a new brain lesion: Single subcentimeter focus of T2/FLAIR hyperintensity is resent in the left splenium of the corpus callosum it is T1 hypointense suggesting chronicity. And of course the litany of lesions on my spinal cord – and for fucking good measure – a goddamn sinus polyp. so fuck you very much-o mr. roboto
  • CL3  Wait, wait! I have been conveniently off-line (and ignoring my phone) for two days. Why, you ask? Ah, because I was in yoga yesterday morning and about 45 minutes into a completely gratifying (and, dare I say, NORMAL) practice, I stood out of down dog and somebody turned the world violently on its side and I dropped to the ground like I had been tackled. Yes! Vertigo! I love this disease! (Not a relapse. Just another cold virus. Which is as bad as a relapse, except I don’t have to pump ‘roids. 15 months clean now.)  Brings new meaning to “Namaste.” The Light in Me Honors the Light in You, indeed.  So I must summarize: T2 enhancements. Chronicity. (I love that I can read that radiology report like it is in English.) Blog. My head is still spinning, and I don’t have the cognitive coherence to write a haiku about ANY of it.  I adore you both. Perhaps I should stop rambling now. Maybe tomorrow my brain will glue itself back together.
  • CL1  I am so fucking over it. I am so happy the Jam is happening but wish I could be there. Jam = love. Went to MS specialist today – one pupil larger than other, need to check for optic neuritis, possible Devic’s, Chemo on the horizon, onto Copaxone, ending steroids but no resolution. I am so over it. over it. over it over it.
  • CL3  WTF?! NONE of that is fatastic. Or even acceptable. I’ve had optic neuritis twice. In my “good” eye. Have never had headaches like that before. Now I have this blurry disc that just kind of floats around.   I take Copaxone. No real side effects for me, except that I’m too skinny and can never figure out where to inject it. “Subcutaneous fat.” It has made some dents on my legs, but that’s it. It hurts like about 5 bee stings at once, but goes away pretty quickly. I really have no faith that it does anything, but I feel like I’M doing something, and I guess that is why I do it.  I know people who manage w/ low-dose chemo. But, dude, what is Devic’s? Must google this now, so all productivity will cease until I figure it out.     Can we maybe NOT have MS anymore?

    AND Seriously – anyone out there have MS or know a crazy person with MS that would like to do a guest post please let me know!!!


2 Responses to “SPOON UPDATE and names have been changed to protect the innocent (heavy swearing)”

  1. Rachael Ikins October 15, 2011 at 11:07 pm #

    I do not have MS but a dear friend has it. She was my French teacher when I was in seventh grade. We became friends through into my adulthood until her MS got really bad. I remember how the students, ignorant kids that we were, thought it funny when she d trip over the trash basket in class or drop a bunch of folders..how silly/clumsy blah blah….when she and I reconnected when I was in my 20s, she told me she had been diagnosed with MS. That she d gone, alone, to Boston, to a hospital for a test where they injected dye and something went wrong besides the diagnosis….we wrote each other until she no longer could. I often think of the loneliness of going to a strange city to a specialist in a big hospital for scary tests to learn something horrible about stuff you ve been unable to explain for a long time….then the long journey home, alone.

    • akopsa October 16, 2011 at 5:13 pm #

      Hi Rachael! Nice to see you here and thank you for your lovely commentary – thoughtful and lyric as always…I would love it if you would write up a short piece about your friend I could guest post. Would be nice to hear about your experience as an observer….best, a

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