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Come early tomorrow, the prisoners get here around noon

2 Nov

This was the direction I was given this morning when leaving Bellevue Hospital’s infusion clinic.  Since Bellevue is the only public hospital in the NYC – they drag people like me who can’t get healthcare coverage due to pre-existing conditions and “make too much money” (I haven’t been able to work in several months and my hubby and I are draining our savings account on my treatment even though he has insurance through CUNY but I can’t get covered until I am symptom free of the MS for one year – don’t get me started)  to get assistance and prisoners in for care.  And thank God for Bellevue.  No matter how back assward they are, we are lucky it is around (although we the people deserve more – don’t get me started).

Anyhoo, t0day is day three of a 5-day outpatient steroid infusion festival.  I have been very lucky to have so many people supporting me through this – and the amazing advice from people like Kim, Jess, Teresa, Caitlin, and everyone else that has sent me notes on healthcare woes and solutions – THANK YOU.  And as always, thanks to my MS ladies:  Mierka, Michelle, TCM and Stacie for kind words of understanding and shared rage!

And now, I thought it might be nice to share with you some photos of what the haps this week so far.

Day One:  Halloween – I went trick or treating for 1 gram of IV steroids – success!

Day Two:  Absolutely no hamburgers.  Or coffee.  How sad!

Day Three:  Okay, this one almost made me barf.  Second stick, first one insanely painful hand try – this one, exceptionally bloody but pretty much pain free.  Gross huh?

So simple to use even with a cannula in your vein

It’s official:  I now have an old-lady medicine chest.  New meds this week: clonazepam to help me sleep off the steroid insomnia and some magical nerve specific pain killer that knocks me out so severely you could swipe one of my kidneys and I wouldn’t know it.

And, just in case Sundeep will lay it out about Steroids, Sex and the Skeleton.  Perfect timing!

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 
or
Three Crazy Ladies with MS Lose then Help One Another Find Mind(s)
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  • 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.
  • CL2  LOVE LOVE LOVE 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
  • CL2  APPPLAUSE!!!
  • 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!!!

Guest Posts, The Jam, The (overly dramatic) Reading, So Special(ist)

10 Oct

Guest Posts!

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Yesterday my friend Teresa was awesome enough to lend her Tale of Woeas the very first guest post on this blog.  Her post racked up the most views this little fledgling blog has had to date (168!).  You like her, you really like her.

It is my hope that as my symptoms decrease and my need to self-soothe through maniacally chronicling my ailment declines I can field other posts from other people living with Multiple Sclerosis.  Teresa shared her guest post on her Facebook page and I saw the scores of comments flood in.  Loving comments about her bravery and strength.  Comments about her humor in the face of some shit-sucking odds.  I know how much those comments mean.  They are humbling.  The are comforting. And they are fun.  Sometimes when I (we) are going through it, those simple messages of love and support can turn a crooked frown upside down – if even for a minute.  And that counts for a lot.

So I open it up to anyone out there who has a Tale of Woe™.  The only requirement is that thou suffer from the MS.  That’s it. Drop me a note in the comment section or email me here:  andykopsa@yahoo.com.

The Jam

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This is your final warning:  Get Thou To The Jam!  If you are within a 100 mile radius of Chicka-go-go today scooch your glorious can on over to The Mookie Jam.  All the cool kids will be there and you are a cool kid too.  There will be loud music, booze, an amazing silent auction, booze, food, Mookie, booze, people riddled with sclerosi, entertainment, booze.

And a note on this entertainment:  word on the street is they – the talented people behind the Jam – may in fact be debuting my very first piece written for the stage.  It’s a hilarious little piece that was inspired by a few  things:

  1. The power of the PredniComa™
  2. Abject self pity
  3. Mistakes Were Made” at the Barrow Street Theater NYC
  4. My crappy MRI results

All but number 3 on this list are self explanatory.  So let me lay some knowledge on you about “Mistakes Were Made”.  This Winter Mierka Fearless Leader Mookie Jam Girten and Michael Shannon (yes that Michael Shannon of Oscar nomination/Boardwalk Empire/Red Orchid Theater fame) were in NYC for a short run of an amazing play called Mistakes Were Made.  It was Michael on stage with his pet fish (star puppet of the show):

What up puppet fish?

And Mierka’s disembodied voice off stage interacting with Michael.  If you haven’t heard Mookie’s voice you must:  here.  And, not for nothing, but Michael joined the already star studded Board of Mookie Jam a couple of years ago because he wanted to be a part of that awesome thing.

Please enjoy the following:

The  Reading

A gentleman alone on stage is reading at a mic:

(woman’s off-stage v/o:   Woman: aged 40 with a clinical history of multiple sclerosis diagnosed in 2006. These are the readings for brain and cervical spine – MRI.   Be advised – these are with and without contrast)

MAN:

MRI of the cervical spine consists of saggital T1 weighted images, T2 images and axial gradient echo images.  There are foci, of increased T2/STIR signal In the spinal cord, on the right, at C2

(off stage v/o:  Which should come as no surprise to you since you never ate your vegetables….)

And;

At C4 – C5 – on the right

Then centrally at C3 – C4

And, again, posteriorly at C6 – C7

(off stage v/o: come on what?….)

And there is that less definite lesion probably present posteriorly

(off stage v/o: Oh for crying out loud)

MAN:

There’s straightening of the expected cervical lordosis –

Vertebral body heights – well maintained

Aggressive osseous lesion

(pause)

No…..

(cautious pause – exhalation)

(off stage v/o:  That sounds like a but? there’s always a but…)

MAN:

There is mild multilevel disk desiccation

(off stage v/o:  Desiccation! Desiccation! That means dry – you know you never moisturize! why don’t you ever fucking moisturize?!)

MAN:

Fourth, third and lateral ventricles are normal in size, proportion and even contour.  A single, subcentimeter focus of T2/FLAIR hyperintensity is present in the

Left

Splenium

Of the

Corpus

Collosum

(off stage v/o:  Wait, wait, wait…let me google this C-O-R…okay and we have Collosum, okay (silent reading mumbles) yes, okay Corpus Collosum:  allows for passage of information between left and right hemispheres of the brain…okay – can result in confusion, fogginess, okay – wait what did I do with my handbag?)

MAN:

The single lesion in the splenius and multiple lesions of the spinal chord is non-specific although the diagnosis of demyelinating disease cannot be excluded.

(Turns to walk off stage and says):  Oh, and by the way

(off stage v/o: yeah?)

 You have sinus polyps

(deep bow)

END

There is still time to give Mookie Jam all your money:  click here.

Special(ist)

_____________________________

In other news, I am totally geeked out to go and see my new MS specialist.  What has become obvious to me over the last few years dealing with general practice neurologists is that there is something lacking.  When I’ve asked my neurologists about things that The Google very clearly spelled out as S.O.P. for the MS: breathing difficulties, Baclofen for MS spasms, The Magical L’Hermitte’s Sign I have garnered mostly just curious looks.  My hope is that when I go meet New Neurologist MS Specialist today I can unload my page long list of questions and get some Special(ist) answers.

 

 

Crooked

9 Oct

(This is the first of what I hope will be many guest posts from fellow sufferers with tales of woe that you shouldn’t be afraid to laugh out loud at while reading.  This week it’s my friend Teresa Mees – and I just can get enough of her funky stuff)

Crooked

_____________________________________

You know it

Two weeks ago I found out I have scoliosis.

Don’t care.

I mean, when I was in 4th grade, this probably would have been sad. Dramatic, even. (And, by the way, props to our school “nurse” who did 30-second scoliosis “screenings” which involved us bending over while she “assessed” our spinal integrity. Good miss on this one, Nurse Mary. But anyway.)

Now, I’m 41. Lacking the motivation to look up the actuarial data on a female with MS, I’m guessing my life is probably a bit more than half over. (Half-dead, perhaps? Yeah, perhaps.) (Please do NOT feel the need to correct my life expectancy in the comments.) And at this point in my theoretical life, I’m comfortable making some sweeping generalizations. Because I’m a literature geek, let’s call it “identifying major themes.”

The theme? The thing that would be a totally safe paper topic if your assignment were to examine the book of my life, the first topic in my own personal Cliffs Notes? The safe “A?”

Crooked.

If you looked at me and missed my crooked-ity, you would fail. Hard. As a matter of fact, if you are going to overlook my crooked, don’t even bother coming to class. Just stay in bed and sleep off your hangover.

First, there was this: when I was eight, I had a tumor. I mean, it tried to kill me and all, but it didn’t. (Score one for modern medicine!) But there’s more: it was in my neck, and it was enormous, and it destroyed a facial nerve and my jawbone and a portion of my skull. Oh, and my thyroid gland. Not to belabor the point, but since the day it was removed, the left side of my face has been completely paralyzed, largely disfigured, and more or less numb. I have been, since that day, The Girl With The Crooked Smile. (This is kind of how people describe me. I’d be lying if I said it doesn’t still hurt from time to time, but mostly… it doesn’t.) I had lots of reconstruction (which, in truth, resulted in crookedness in other parts of my body, but the details are too, well, detailed for me to write about them this morning), with limited success.  Weirdly, the thing that bothers me most about my face is that, because the skull behind my ear was removed, I cannot for the life of me get a pair of glasses to sit straight on my face. I need glasses. Plus I think they make me look all intellectual and smart. But I don’t wear them much, because they are so crooked that they make my skin crawl. (And, just to drive it home, I can’t wear contacts because of the facial asymmetry.) So I don’t wear the glasses, resulting in my vision become increasingly asymmetrical. (Crooked, even.)

In any case, I’ll skip 20 years of emotional hell and just say that the whole incident was not easy. (If I don’t win “Understatement of the Year” for that sentence, no one deserves it.) But I won that battle. I still vacillate between feeling above it all, feeling sympathetic to those who are compelled to point and stare, flipping a big “Fuck You” to those same people, or feeling vulnerable. But I am confident and self-assured. I won.

Skipping another chunk of time, a few years ago, I started having pain in my left face. Searing pain. Pain that made me cry. Pain that landed me the emergency room, more than once. Crooked, one-sided, vicious pain. I was diagnosed with trigeminal neuralgia (caused, a physician told me, by the tumor-induced physical trauma of my childhood). I was sent on my merry way with anti-seizure meds and narcotics, which made me so high that my darling (really, he is darling) father came to stay with me because I couldn’t be trusted with my own children.

But the pain didn’t go away. It got worse. My left arm became numb (and when it wasn’t numb, it felt like it was on fire). Then my left leg stopped supporting me. I ran into so many things that my left leg was a continuous bruise. Crooked. Crooked. And crooked.

Thus began The Multiple Sclerosis.

It is the Grande Dame of Crooked, really. At least for me. At least for right now. Vertigo is my biggest problem this month, and I kind of appreciate it (when I don’t hate it). Vertigo makes it seem like the rest of the world is crooked, and I’m straight. It’s a nice break from always feeling like I’m screwed up.

But cue the music! Gloria Gaynor sounds about right: I Will Survive! (Nothing pulls at my heartstrings like a cliché.) I have a messed-up face. I have the MS. But I have a killer body. I’m a trainer at a gym. I’m getting a super-whammy national certification in Pilates instruction. All this crookedness will not get me down!

So two weeks ago I was at my crazy-awesome Pilates course, and the physical therapist who is teaching was watching me practice an exercise. She said: “Wait. Do you have [pregnant pause]…?” Me: “Probably. But what are you talking about?” She: “…scoliosis?” She proceeded to do a real assessment of my spine, and it was written on my vertebrae like a chapter title. “Chapter Five: Scoliosis.”

Right, then. This killer body? A façade. It is as twisted as the rest of me.

Yes. I am crooked. To the core.

Post-script #1: I have never asked, “why me?” But I do wonder at what point this turns into piling on. I steadfastly refuse to wonder what’s next.

Post-script #2: I am not usually such a downer about any of this. I’m usually pretty damned—ahem—balanced and funny. But this week? This day? I am tired. I’m out of levity. As anyone with The MS will tell you: it is a roller coaster. To ride it intact, we have to learn to ride the emotional hills. To deny the truth of the downs would be doing myself, and (more importantly) all my beautiful friends in MS, a disservice. And that? Would be truly twisted.

Spoons

7 Oct

I have had time on my hand these last few weeks, this blog is evidence.  I have had time to troll the internet checking out what other people with The Invisible Disease are up to, writing about, coping with and soldiering through.

I’ve found some great stuff: funny, sad, insightful and unsettling.  Unsettling because it is like looking in the mirror. Because I have This Thing too.

One blogger wrote that on a recent visit to her neurologist she decided to let him know, “you know what, I don’t think I have MS.”

Her neurologist assured her that she did, the symptoms she was feeling were a relapse.  Her disease hadn’t magically gone away.

But she was so sure!  

She had to have been misdiagnosed, she didn’t look sick on the outside.

That was me.  It continues to be me to a certain degree but the reality is once again setting in: I have MS.

I was diagnosed in 2006.  Seems like a long enough time to come to grips with something.  But I have been incredibly lucky. That first year of going through spinal taps, blood patches (gross), IV steroids, what amounted to days in MRI tubes sucked ass, there is no getting around it.  I look back and think sometimes: how did I get through that?  The answer, looking back is easy:  amazing family and friends.

But as I said, I have been lucky.  Since my initial symptoms and diagnosis, I have been virtually relapseless.  There have been plenty of days I have felt off, fuzzy, not quite right.  That weakness in my left hand never went away and sometimes hot showers would set my skin a crawl.

Since 2006 I have had plenty of time to talk myself out of having it.

This week I went in to my neurologist (who has received mixed reviews as some of you may know) to follow-up on how the old steroids were working.  There is no denying things are getting better, but I am nowhere near 100%.  As I sat crinkling the parchment on the table, Neurologist and I reviewed my most recent MRI reports:  brain and spine.  Lesions on c-spine – check, brand spanking new lesion (my first!) on my brain – check!

He said, “Well, these are consistent with the findings for multiple sclerosis so there is no issue there as to diagnosis…” then he said something else but I didn’t catch it.

Wait.  Was there an issue as to diagnosis?  Did I possibly not have this thing?  Stupidly and just for a moment, I felt victorious.  I knew it!

But I guess that seals it.  I guess it was sealed in 2006.

Talking with my friend who has This Thing, she and I talked about relapsing-remitting MS.  How that bitch lulls you into a sense of well-being, lets you jet off to foreign countries, take up running, sleep through the night, walk, and then out of no where you are smashed in the face with it.  Just like getting that diagnosis all over again.

I was diagnosed in Chicago under the care of the delightful Dr. Shepherd who I have gushed about before.  We sat in his office – I can’t remember what visit number we were up to.  Due to the way MS is diagnosed, you can’t walk into a neuro’s office with the first signs of an attack and be proclaimed MS’ed.  Instead you are given the diagnosis of transverse myelitis, hooked up to bags of steroids and sent along your way with instructions to return if the symptoms crop up again.

This visit to Dr. Shepherd  was after a couple of months without symptoms and I was back, having gone through a battery of tests all over again. I knew what I was in for.  I had exhausted the internet of all its autoimmune disease information on this one:  the second time around with “transverse myelitis” was the other shoe.

He told me very casually but in a caring way, “we are looking at multiple sclerosis”.

“Wait,” I said, “How do you know?”

Smiling he said, “This is your second attack in a few months, with the banding in your CSF, the lesions on your spinal cord and 20 years of experience, we are looking at MS.”

“Oh.”

After that, he gave me a book bag full of information on MS, medication and a CD starring Our Lady of the Multiple Sclerosi Ms. Terri Garr.  It was yellow with a long black strap.  Black and gold were my high school colors – I remember thinking that.  Go Comets!

I walked out of one Northwestern building directly into the lobby of another.  I had to sit down.  I called my mom.  I called Tim.  I called Kristin.  I called Donna.  I don’t remember what they said.  I know I probably tried to act like it was no big deal.  I hate hate hate when people worry.  I think then I went and got a cup of coffee and went home.

The next weeks are a blur.  Mom and my daughter came to town.  We got a visit from a nurse who taught me how to inject my Rebif by myself.  I laid around.  It was the week of my birthday.  My girlfriends came over, brought cake.  I watched Star Wars with my family.  I cried a bit.  Mom did too.

And then, I stuffed it away.  I got better.  It became more distant and easier to forget.  That particular recovery came with no acceptance.  This one hopefully will.

Today I am stepping down the Prednisone dosage, thank fucking God.  I barely slept last night and couldn’t nap today if I had a gun to my head (I would have faked it of course but not caught a wink).  At one point I was laying on the couch because I just couldn’t sit anymore, there was too much stimulation.  I had to have Tim come and lay on me for a while so I could get relief from my skin trying to jump off my body.

I came across another post from another woman with an Invisible Disease, Lupus.  She wrote about trying to explain to friends and family what it was like to have Lupus, what did it feel like, she didn’t look sick – how could they know?  She came up with – brilliantly – The Spoon Theory and now I share it with you.

I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons.

She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick.

I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

It goes on from there and is worth a trip to the embedded link at the beginning of the passage.  Now, I am going off to el coucho to cuddle what remains of my Friday spoons.

Moment of cute

6 Oct

Because sometimes nothing cures what ails you like some cute.  This little buckaroo was checking my scene in Battery Park City earlier this summer.

He was like, “Say wah?”

And I was like, “Yeah.”

I especially like the supporting characters: Squirrelly cutting across background, Pigeon trying to butt in.  Magical!

I’m kind of a jerk

6 Oct

Yesterday I got off to a rip-roaring start cavalierly declaring that I was going to fire my neurologist.  I listed all the reasons and smugly launched into self-righteous snottery.  It felt fantastic!  Letting this guy have it – albeit in a blog post – was insanely liberating.

And then, this happened:  he fired me.  And it isn’t how it sounds.  It was a sort of love fest of a firing.  It was curious and came from nowhere.

We did the routine physical neurological exam:  “Can you feel this? Does this feel the same as this? Tell me when you can feel the pin here, your reflexes are not nearly as jumpy…”   Then he asked me overall how I was doing.  Much better this week: difficult and painful breathing was subsiding, I could feel my feet and didn’t need to sleep the entire day anymore.

He was visibly pleased. Then he said, “You know what, I don’t think I need to see you anymore.”

Wait:  That’s My Line!

I have to admit I was stunned.  I thought for sure this guy was going to keep me coming in for weeks to poke me with baby pins.  But no, not the case.

He asked me who I was going to be seeing at NYU/Bellevue.  Dr. Howard.  He never heard of him (which didn’t mean anything of course, he just didn’t know him).

Then he popped up and said give me a minute.  I sat there and took this picture:

You thought I was kidding about all the signs?  This is just one corner of one room.

Then he was back, and get a load of this.  He made a personal call to an MS specialist friend of his associated with the NYU Comprehensive Multiple Sclerosis Care Center.  She would see me next week and on a sliding scale.

I am kind of a jerk.

Here I shredded this doctor for being callous, curt and unfunny.  Well, those things remain true, I am not going to lie and tell you differently.  And there are all those signs all over the place.  Oh and the OCD.  But this act, made up for them all.