I'm so over discussing my past medical woes. Believe me, I can't wait to move on.
But before I do, I knew there was one last part of my tale left to be told, a last chapter, if you will....
The overwhelming reception I've received from people suffering from auto-immune diseases, have inspired me to share with you a few emails I wrote to a small group of my closest friends & family throughout last fall/winter.
They are verbatim, with certain names and identifying characteristics removed to protect other people's privacy.
I'm hoping this can shed even more light on the baffling and chronic disease of Lupus.
While many suffer for years, or remain undiagnosed or improperly treated, I know damn well I'm beyond fortunate to be in remission (for now.)
However, I didn't feel very lucky at the time, as you'll soon see.
I began feeling terrible in August of last year...
On Oct 5, 2013, at 3:09 PM, Kristen Johnston wrote:
Sorry to write a group email, but I wanted to fill a few friends & family in on what's been up with me.
First of all, I'm ok, ok? Don't flip out.
Here's the scoop, nuts & bolts:
Over the course of mid Aug/early September, I began to notice a rapid decline in my physical strength. When lying down, I felt fine.
But it's become impossible for me to walk a block without resting. Like an old lady. On a stoop. Stairs? Impossible. I take it one step at a time like a toddler. My legs fill up with lactic acid, and my heart pounds out of my chest. My limbs feel like they weigh 300 lbs each. I can no longer lift my purse and my head has literally become too heavy for my neck to hold up.
I kept convincing myself I was just under the weather, not eating right, needed more sleep, etc. (Except none of those were true.) If I DID exert myself (like teaching an NYU class, or speaking after a screening of a documentary I'm in, 'The Anonymous People'), I'd have to sleep at least 24-48 hrs straight.
I finally decided to visit to my internist and he became alarmed at how low my white blood cell count was & sent me to a Hematologist. After testing me, she suspected I had Anaplasma, a tick-borne illness.
I got on heavy duty antibiotics and the next day I felt a bit better. But then on Monday my health took a huge nosedive. (I prefer not to use the word "relapse," for obvious reasons)...I was teaching class & had to literally hold my own head up with my hands for the last half of it. I could barely walk out of the building.
Turns out I tested negative for tick (but sometimes you can still have a tick-borne illness & test negative)...but also everything else. No issues w: liver, kidneys, heart, pancreas, stomach. I'm totally, shockingly healthy...so she became concerned it could be my bone marrow.
Which would be bad. Leukemia bad.
However, if it WAS cancer, other aspects of my blood results would be abnormal & they're totally normal.
I've been back to her a number of times, each time testing for different things & my white blood cell count.
To get perspective, a normal white blood cell range is anywhere between 4.3 to 10.0. Mine has been fluctuating btw 1.8 to 2.0...which is, like, I dunno, a dead person's? Finally, I went in yesterday for a scheduled bone marrow biopsy - which is supposed to be agony. Dunno why, I mean a huge needle jammed into one's pelvic bone? Sounds fun to me!
However, she took my blood again before the procedure, and suddenly my wbc count was up to 2.8. (From 2.0 a few days before.) This made her VERY happy. She decided she didn't want to do a very painful procedure unless totally necessary, which made me VERY happy. I'm going back in 1st thing Monday am, and if it dives again, bone marrow biopsy.
I'm praying that tons of bed rest & turbo antibiotics do the trick.
Yesterday she said that I "completely baffle" her. (Duh. Who don't I baffle?)
But in this case, she was referring to my blood results. I found out that if it IS a tick thing, all of this is really a new frontier for them, and they're learning new stuff every day. I did have a weird bite on my leg in Ct....so who knows?
So, it's marathons of Long Island Medium & Dateline episodes for me.
You can all support me by not diagnosing me (I LOVE to do this, too...but YES I've been tested for EVERYTHING, and YES if it's low on Mon I'm getting 2nd opinion, which Dr supports).
If anyone in NYC wants to pay a very brief visit to me next week, I'd love it. I just can't get overwhelmed. (And the house is a mess, deal with it.) I have tons of friends helping out.
I love you guys, and will do my damndest to keep y'all updated as soon as humanly poss. But don't fret if I don't respond to "how are you?" emails. Doing my best, promise. And the answer today is: better than yesterday. But I haven't moved much, so hard to be definite. Like I said, lounging, I feel 100% normal.
Last, please don't tell people about all this...you are who I'm updating for now & I don't want rumors spread. You'd be surprised how fast something like this can turn into CRAYZEE.
Sorry if TMI. Just wanted to be clear.
Love....
K
On Fri, Nov 8, 2013 at 7:24 PM, Kristen Johnston wrote:
Hi my dear friends...
I figured I've put it off long enough and it's time for an update. In LA doing my damnedest to shoot 'the exes' but it hasn't been pretty.
I can't believe it, but after three long months I'm still really, really sick. I've been to a grand total of 12 Drs now, (each numerous times): Neurologists, Endocrynologists, infectious disease specialists, hematologist's, etc etc...
I've had every possible horrific procedure done, CT scans, nerve tests, blood test after blood test...and other than my white blood cell count being terrifyingly low, being unable to walk or stand & my muscles being so weak I need a brace to hold my neck up, they can't figure out what the hell is wrong with me.
Yesterday, I spoke with 'the exes' producers and we all agreed that I need to go to the Mayo clinic next week and get this shit figured out. Which means I'm out of 2 episodes, which KILLS me. I'm already basically a ghost this season. But I know I have to. Trying to be 'funny' has been the challenge of my life, and this has thrown everything on the show completely out of whack.
I do know what it ISN'T. It's NOT: ALS, MS, cancer, anything involving thyroid or pituitary, a degenerative muscle disease, or AIDS. My liver, heart, pancreas, spleen, etc all normal. My lungs & chest are fine. (Phew!)
It's a complete mystery.
And truly humbling...
Walking up the stairs in my LA house is excruciating, so once I finally crawl up to my bedroom, I'm stuck. I have to have my roommate David or assistant Holly or friends bring me food & take care of Pinky.
I walk like a 90 year old. I need a wheelchair for anything more than 10 paces. Not exactly ideal when you're one of the leads in a physical comedy.
I've lost 25 lbs in 2 months despite eating well & drinking these horrible pressed juices Holly brings me every day.
Look, I'm not writing this to alarm you or get sympathy. I just felt you ought to know.
I'm sure I'll be fine, but almost 3 months of being unable to do anything for myself has taken a toll & I've become weepy.
However, I am still sober.
Don't know how I've managed that, but I have.
I love each of you a lot.
K
On Nov 14, 2013, at 6:20 PM, Kristen Johnston wrote:
Finally at Mayo clinic in Scottsdale, Arizona.
I never would have thought this before, but being pushed in a wheelchair everywhere isn't nearly as fun as this lazy gal imagined. I mean, you think it'd be kinda cool, just sitting & being pushed everywhere, but there are really no positives. The Airport? Your face at everyone's ass level, and I discovered that waiting in the line at security has somehow given people carte blanche to recklessly fart to their hearts content. You're pushed by deeply unfriendly people, until you start spewing 20 dollar bills at them. Curbs mean nothing to these people, and after you're crammed a few times into them, you begin nervously pointing them out blocks away. One of the best parts is being shoved through a door, and they become distracted and the door slams back on your knees.
People discuss things about you behind & above you, as if your inability to walk has spread to your ear canals. Which is why I finally understand why old people are constantly yelling in paranoia "What? What are you saying? I can't hear you!"
I'm pretty used to being stared at, but I gotta say, it's way funner now--not to mention, you all know how much I ADORE when people feel sorry for me. People look at me with pity now. I can read their thoughts "OH MY GOD, what happened to that actress lady?"or "I had no idea that 3rd Rock lady was THAT old!"
If I wasn't sick, the hotel would be amazing. I have to be golf carted everywhere (a HUGE improvement over the chair...I just feel like I'm on a lot).
At the crack of ass this morning, as I was being carted to my car, I watched a very old man & his ancient wife as they hobbled towards the pool & I swear I was overcome with envy. Because I knew I couldn't even walk that far. Impossible.
Envy was quickly replaced by fear.
In Scottsdale, everything everywhere you look is brown adobe, which I'm guessing they insist folks do, so as not to distract your eyes from the giant brown mountains. Unfortunately, at certain times of day the effect just ends up resembling a big ole pile of gorgeously sunlit poop.
Another disconcerting element I didn't consider until today is that the pooh-brown drug rehab I went to 7 years ago is very close to here.
Which is why, at 6am, as I drove through the murky brown morning, I suddenly had déjà vu....There I was, checking myself into another brown adobe building in Arizona desperately hoping that the people within it would somehow save my life.
Yet again.
The people here at Mayo are incredible. My neurologist Dr. S met with me for a full hour in the am, and following that, I gave at least 1/3 of my blood.
Then, I had a few tests I'd had before (and oddly, didn't miss one bit), except these guys were WAY more thorough. (Translation: MUCH more painful) These tests included the ole "push a needle directly into a muscle & then send electric shocks into that muscle." (In all muscles of legs and arms. Repeatedly.)
Then there's part 2, where they shove a needle deep into you & move it around a bunch & it makes noises & info is somehow poured into a computer. When it touches a nerve it's beyond awful.
But this is just a prelude to another nerve/needle/electricity combo that was so painful it was all I could do not to scream. After I unclenched my jaw, I shakily asked how many more times she'd have to do that.
She said, without a hint of irony "A thousand."
Literally, one thousand more jolts.
Then, it's time for my wrist. Same thing. 1,000 jolts.
The only way I stayed sane(ish) was by remembering that James Franco movie where he's hiking & a boulder traps his arm & he has to cut it off with a Swiss knife. So comparatively, a few thousand electrodes are NOTHING. The oddest part is, after a few hundred jolts, you kinda get used to it. It evolves from someone jabbing a hot screwdriver into your bicep to a bee stinging your arm over and over.
At the end of today, I asked Dr S what he thinks it possibly could be so far.
He said we'll know once blood and test results come back, which is a phrase I never, ever want to hear again.
Despite all this I'm VERY glad I'm here!
If you got this, I love you dearly
Kristen
On November 15, 2013 at 4:36:14 PM Kristen Johnston wrote:
I have a few fun & helpful tid-bits for all you out there who's always drempt of someday going to the Mayo Clinic:
*When anyone says "Not really" in answer to"Will this hurt?," they're lying.
What they REALLY mean is, "More than childbirth."
*Whenever anyone says a procedure will take "20 minutes," this actually means at least 2 hours.
*Having an MRI finally answers this age-old, burning question:
"What would it feel like to be buried alive with the Muzak version of 'Evita' blaring in your ears, all while Governor Chris Christie jumps up & down over & over on the roof of your coffin?"
Not THAT bad, right?
Except for the fact that it goes on for 90 mins straight.
Oh, yeah...and you have to remain perfectly still the ENTIRE TIME.
Which means your face instantly becomes unbearably itchy. It's mental torture. All you can think about is that itch on your nose. On your chin. On your arm.
"Don't think about the itch. Don't think about the itch. Don't think about the itch."
*Last, just when you think "You know, I'm starting to miss having my nerves stimulated with painful electric jolts," are you ever in luck!
Today, I was treated to 2 hours of having 1st my foot & then my wrist be electrocuted.
She strapped something around my ankle, glued a bunch of electrodes all over my head, and WOOHOO!!!! PARTY TIME!!!!
The lumbar puncture (spinal tap) is Mon. Super excited.
I won't have any answers until Tues.
Of course, I'll keep you posted!
Well, I sure hope these nuggets of wisdom come in handy for all you "Mayo-niacs" out there!!!
Love
K
On Nov 19, 2013, at 7:34 PM, Kristen Johnston wrote:
It's hard not to get disheartened. After countless Doctors ( in both NYC & LA), and two weeks here at Mayo, they still don't know what's wrong with me.
Dr. S said it's a 50/50 chance it's either a bug bite & immune system went haywire, OR I have something else, Transverse Myelitis, a neurological disorder affecting the spinal cord. OR something else.
So, the treatment for 1st option is to infuse me every day for an hour with steroids. If I show no improvement, it's time for a muscle biopsy (which can be performed at back in LA at Cedars Sinai). Everything is "and then we 'll move from there."
The GOOD news is, no cancer, bone marrow clean, no tumor etc.
My wbc count is 2.7, which still sucks.
But there is definitely an issue with my nerves & muscles. (Duh). He's narrowed it to top of my spine or base of my brain.
So that's the deal.
I'll be home on Sun & continue my treatment with Dr. L, one of the neurologists.
Dr. S said it's a very confusing case.
No shit, Sherlock.
I'm sure you guys have many questions, so I've asked Dr S to write out his assessment in a email so I can fwd to you all.
I'm frustrated & sad. I just was so hopeful it would be something definitive. I know some of you want to talk to me, but right now I'm not in the mood. Gonna take a bath & crash.
Hopefully, my neurologist in LA can make sense of all these results and give me a goddamn diagnosis.
I LOVE YOU
Thanks for all your support!
I miss you guys.
But mostly Pinky.
Love
K
Hi all....
Thank u so much for checking in....I can't tell u how much it means to me.
Short answer? I'm doing really really bad.
Sorry, there's no 2 ways about it. I am way fucked my friends. Ain't no funny spin I can find.
Basically, what happened is the steroid infusions made me feel slightly better. But 2 days after the 5th & final one I was worse than ever.
It didn't help matters that on Tues my neurologist (very esteemed, kind Dr, in his 60's) looked at all the Mayo results, ran tests & then said that he felt it was time I faced that there was a very real chance I'd never improve.
I was totally shocked.
"Are you saying that at 46 I could be bedridden the rest of my LIFE??!"
"Yes."
"But... I've done EVERYTHING you people told me to! I fucking went to Mayo for 2 weeks! You need to fix me!"
He didn't know what to say, I could tell he felt bad.
"Look, Kristen, I've never seen a case like this before in my life. And I'm old."
Whatever. He took away my hope. I hate him. I'm switching Doctors on Monday.
So that afternoon my family arrives (staying at a hotel, trip scheduled long ago). My mother, sister & her family came to this giant house I'm renting & of course I'm lying upstairs in the bed like Baby Jane & I burst into tears when I see them.
I'm the girl who once left for a semester in Sweden at 15, a semester in Colombia at 16, & moved to NYC at 17 & has always been fiercely independent. I'm now utterly bedridden & unable to take care of herself.
On Dec, 16, 2013 at 1:05 PM KRISTEN JOHNSTON wrote:
FINALLY.
Hi Guys,
Looks like I get to spend another Christmas in the hospital. Can't wait. (actually, I'm so excited to have a diagnosis, I really CAN'T wait.)
Lemme explain: It's official. I have a "Lupus Myelitis" (or Myositis) which is…
Yet, NOBODY could figure it out?????? I'd been tested for Lupus, a number of times, it was negative. What I didn't realize, is there are many different tests. They just didn't do the correct one. (Seriously?!!??)
So heres my deal…..I'm checking in to Cedars 7am Thursday for 5 fun-filled days of IVIG, steroids, chemo and a whole bunch of other stuff. Dr. Wallace said if this works (and he's completely confident it will), I should feel WAY better within a week.
One week.
5 bedridden months spent in a quagmire of confusion & loneliness, and it could have been solved in A WEEK. To say I feel frustration would be a gross understatement…
There's not only the hellacious nightmare I've gone through, the SHITLOADS of money I've spent, the thousands of hours spent in Drs offices, what my friends, family and all the people who had to endlessly take care of me & feed my dog did…There's also this tv show, that I love so passionately & believe in so much.
I know, I know, it's "just a TV show, your health more important", and of course I agree…but this is my career, my passion, my joy. I love it. I've worked so hard for many years to be sober & sane enough to appreciate it, and to me it's almost as important as anything else.
Just imagine all written scripts & planned plots being tossed a week before production. Not to mention imagine trying to write a different script, unsure if I'd ever be healthy enough to do it. Mark and all of the writers re-writing constantly, never sure if I'd even be able to show up, the actors trying to rehearse w/my stand-in, the stress on everyone "Does she have a tick disease? Oh, Thyroid? Now they don't know? When will she be better? Does she think she can do 2 scenes? Can this be over yet?", Mindy & all producers in a perpetual state of scrambling & solving, all the talk shows & press I was supposed to do, promotional stuff, all cancelled, Sheryl the wardrobe gal dressing me as I lay on my couch, sobbing, David, who somehow did my hair in same position, while I tried to put on my makeup, etc etc, etc...
It felt like we all worked so hard for 21/2 years to reach a common goal & suddenly it was gone.
So many Dr's, so many opportunities to help me get better. So many agonizingly painful tests, all for naught. THAT IS WHY I"M PISSED.
I mean, why on earth didn't Dr. L, the guy who said (when I came back from Mayo) " You know, there's a good chance you'll feel like this for the rest of your life", that he was "baffled" by my case, and "had never seen anything like it in his 40 years in the medical field"….Why didn't he JUST SEND ME TO SOMEONE ELSE?
How can all these Drs Why just shrug their shoulders & give up? How?
I have great insurance, access to brilliant Doctors & hospitals.
So if I was screwed, what about all those other people with no insurance, funds, access to great medical care? What are they supposed to do?
I'm filled with equal parts relief and rage, it's the oddest feeling.
Love, Kristen
On Dec 22, 2013, at 1:20 PM, Kristen Johnston wrote:
Hi all...
Well, as I'm sure you saw from the multitude of news stories, I have Lupus & am dying. (Kidding! But some of them sounded that dramatic! Slow news day, perhaps?)
I wanted a few weeks to recover from the Lupus before people knew, so I was intentionally non-specific with the press, saying only that it was an auto-immune disorder.
Sadly, people started saying really cruel things, making up awful rumors... that I had HIV, was dying, was just "trying to stay in the news" (??), even that I'd relapsed, etc.
So the next day I wrote on Facebook that I have Lupus Myelitis, to put an end to all the stupidity.
I would've preferred a month to acclimate to what I have & become more informed before everyone else knew...but as the song goes "You can't always get what you want..."
I checked into the hospital first thing Thurs to begin my treatments and I was shoved in the most depressing, tiny, beige room I've ever seen in my life .
The man next door was older than dirt & clearly the only objective he had left in life was to cough. Endless, loud, non-stop hacks. Then an occasional moan. Silence. Dead? ...and the coughing began anew.
The only thing preventing me from leaving was the fact that I was connected to a machine pumping steroids into me, and that I still can't walk.
I just lay there, getting more freaked out & pissy & weepy until finally Dr Wallace came by.
"I HATE IT HERE" I said and he laughed.
"Kristen. You have an enormous amount of steroids in you. OF COURSE you're miserable."
We had a long talk about what medication would be ok to give me to chill me out, and we decided one Ativan would be okay. (Benzos were never my thing.) So that helped A LOT. Then, they started with the rounds of IVIG & chemo.
I was there 41/2 days, came home yesterday, and I really do feel MUCH better! I'm still weak & all that, but better.
Dr Wallace has a whole plan for me. Basically, I see him Fri where he's gonna hook me up w/a physical therapist, and start me on a daily pill called Plaquenil that supposedly works wonders. He wanted to wait to make sure all these IV drugs accepted ok first. I get IVIG infusions every month for 6 months.
Dr Wallace, a lovely man (who read my book, how cool is that?!), said he's fairly confident I'll be in full remission in 6 months-year.
Until then, I'll get better & better every day.
We hope.
I wanted to start on physical therapy this week, but he doesn't want to push it...he said my body is adjusting to A LOT.
So that's where I'm at.
Listen. I know I've said this to most of you...but THANK YOU. For all the love & care you've shown me. The visits, the emails, the concern...I feel very loved.
I can't WAIT to kick this fuckers ass once & for all!
Sorry for the F-bomb ma! But you gotta admit, in this case it fits!!!
I love you all & thank you so much for loving me.
I'm excited to slowly get back to work in a few weeks!
Love
Kristen
There it is. My story.
Now I can move on.
I hope it helps someone out there feeling lost & lonely.
Love
KJo
But before I do, I knew there was one last part of my tale left to be told, a last chapter, if you will....
The overwhelming reception I've received from people suffering from auto-immune diseases, have inspired me to share with you a few emails I wrote to a small group of my closest friends & family throughout last fall/winter.
They are verbatim, with certain names and identifying characteristics removed to protect other people's privacy.
I'm hoping this can shed even more light on the baffling and chronic disease of Lupus.
While many suffer for years, or remain undiagnosed or improperly treated, I know damn well I'm beyond fortunate to be in remission (for now.)
However, I didn't feel very lucky at the time, as you'll soon see.
I began feeling terrible in August of last year...
On Oct 5, 2013, at 3:09 PM, Kristen Johnston wrote:
Sorry to write a group email, but I wanted to fill a few friends & family in on what's been up with me.
First of all, I'm ok, ok? Don't flip out.
Here's the scoop, nuts & bolts:
Over the course of mid Aug/early September, I began to notice a rapid decline in my physical strength. When lying down, I felt fine.
But it's become impossible for me to walk a block without resting. Like an old lady. On a stoop. Stairs? Impossible. I take it one step at a time like a toddler. My legs fill up with lactic acid, and my heart pounds out of my chest. My limbs feel like they weigh 300 lbs each. I can no longer lift my purse and my head has literally become too heavy for my neck to hold up.
I kept convincing myself I was just under the weather, not eating right, needed more sleep, etc. (Except none of those were true.) If I DID exert myself (like teaching an NYU class, or speaking after a screening of a documentary I'm in, 'The Anonymous People'), I'd have to sleep at least 24-48 hrs straight.
I finally decided to visit to my internist and he became alarmed at how low my white blood cell count was & sent me to a Hematologist. After testing me, she suspected I had Anaplasma, a tick-borne illness.
I got on heavy duty antibiotics and the next day I felt a bit better. But then on Monday my health took a huge nosedive. (I prefer not to use the word "relapse," for obvious reasons)...I was teaching class & had to literally hold my own head up with my hands for the last half of it. I could barely walk out of the building.
Turns out I tested negative for tick (but sometimes you can still have a tick-borne illness & test negative)...but also everything else. No issues w: liver, kidneys, heart, pancreas, stomach. I'm totally, shockingly healthy...so she became concerned it could be my bone marrow.
Which would be bad. Leukemia bad.
However, if it WAS cancer, other aspects of my blood results would be abnormal & they're totally normal.
I've been back to her a number of times, each time testing for different things & my white blood cell count.
To get perspective, a normal white blood cell range is anywhere between 4.3 to 10.0. Mine has been fluctuating btw 1.8 to 2.0...which is, like, I dunno, a dead person's? Finally, I went in yesterday for a scheduled bone marrow biopsy - which is supposed to be agony. Dunno why, I mean a huge needle jammed into one's pelvic bone? Sounds fun to me!
However, she took my blood again before the procedure, and suddenly my wbc count was up to 2.8. (From 2.0 a few days before.) This made her VERY happy. She decided she didn't want to do a very painful procedure unless totally necessary, which made me VERY happy. I'm going back in 1st thing Monday am, and if it dives again, bone marrow biopsy.
I'm praying that tons of bed rest & turbo antibiotics do the trick.
Yesterday she said that I "completely baffle" her. (Duh. Who don't I baffle?)
But in this case, she was referring to my blood results. I found out that if it IS a tick thing, all of this is really a new frontier for them, and they're learning new stuff every day. I did have a weird bite on my leg in Ct....so who knows?
So, it's marathons of Long Island Medium & Dateline episodes for me.
You can all support me by not diagnosing me (I LOVE to do this, too...but YES I've been tested for EVERYTHING, and YES if it's low on Mon I'm getting 2nd opinion, which Dr supports).
If anyone in NYC wants to pay a very brief visit to me next week, I'd love it. I just can't get overwhelmed. (And the house is a mess, deal with it.) I have tons of friends helping out.
I love you guys, and will do my damndest to keep y'all updated as soon as humanly poss. But don't fret if I don't respond to "how are you?" emails. Doing my best, promise. And the answer today is: better than yesterday. But I haven't moved much, so hard to be definite. Like I said, lounging, I feel 100% normal.
Last, please don't tell people about all this...you are who I'm updating for now & I don't want rumors spread. You'd be surprised how fast something like this can turn into CRAYZEE.
Sorry if TMI. Just wanted to be clear.
Love....
K
On Fri, Nov 8, 2013 at 7:24 PM, Kristen Johnston wrote:
Hi my dear friends...
I figured I've put it off long enough and it's time for an update. In LA doing my damnedest to shoot 'the exes' but it hasn't been pretty.
I can't believe it, but after three long months I'm still really, really sick. I've been to a grand total of 12 Drs now, (each numerous times): Neurologists, Endocrynologists, infectious disease specialists, hematologist's, etc etc...
I've had every possible horrific procedure done, CT scans, nerve tests, blood test after blood test...and other than my white blood cell count being terrifyingly low, being unable to walk or stand & my muscles being so weak I need a brace to hold my neck up, they can't figure out what the hell is wrong with me.
Yesterday, I spoke with 'the exes' producers and we all agreed that I need to go to the Mayo clinic next week and get this shit figured out. Which means I'm out of 2 episodes, which KILLS me. I'm already basically a ghost this season. But I know I have to. Trying to be 'funny' has been the challenge of my life, and this has thrown everything on the show completely out of whack.
I do know what it ISN'T. It's NOT: ALS, MS, cancer, anything involving thyroid or pituitary, a degenerative muscle disease, or AIDS. My liver, heart, pancreas, spleen, etc all normal. My lungs & chest are fine. (Phew!)
It's a complete mystery.
And truly humbling...
Walking up the stairs in my LA house is excruciating, so once I finally crawl up to my bedroom, I'm stuck. I have to have my roommate David or assistant Holly or friends bring me food & take care of Pinky.
I walk like a 90 year old. I need a wheelchair for anything more than 10 paces. Not exactly ideal when you're one of the leads in a physical comedy.
I've lost 25 lbs in 2 months despite eating well & drinking these horrible pressed juices Holly brings me every day.
Look, I'm not writing this to alarm you or get sympathy. I just felt you ought to know.
I'm sure I'll be fine, but almost 3 months of being unable to do anything for myself has taken a toll & I've become weepy.
However, I am still sober.
Don't know how I've managed that, but I have.
I love each of you a lot.
K
On Nov 14, 2013, at 6:20 PM, Kristen Johnston wrote:
Finally at Mayo clinic in Scottsdale, Arizona.
I never would have thought this before, but being pushed in a wheelchair everywhere isn't nearly as fun as this lazy gal imagined. I mean, you think it'd be kinda cool, just sitting & being pushed everywhere, but there are really no positives. The Airport? Your face at everyone's ass level, and I discovered that waiting in the line at security has somehow given people carte blanche to recklessly fart to their hearts content. You're pushed by deeply unfriendly people, until you start spewing 20 dollar bills at them. Curbs mean nothing to these people, and after you're crammed a few times into them, you begin nervously pointing them out blocks away. One of the best parts is being shoved through a door, and they become distracted and the door slams back on your knees.
People discuss things about you behind & above you, as if your inability to walk has spread to your ear canals. Which is why I finally understand why old people are constantly yelling in paranoia "What? What are you saying? I can't hear you!"
I'm pretty used to being stared at, but I gotta say, it's way funner now--not to mention, you all know how much I ADORE when people feel sorry for me. People look at me with pity now. I can read their thoughts "OH MY GOD, what happened to that actress lady?"or "I had no idea that 3rd Rock lady was THAT old!"
If I wasn't sick, the hotel would be amazing. I have to be golf carted everywhere (a HUGE improvement over the chair...I just feel like I'm on a lot).
At the crack of ass this morning, as I was being carted to my car, I watched a very old man & his ancient wife as they hobbled towards the pool & I swear I was overcome with envy. Because I knew I couldn't even walk that far. Impossible.
Envy was quickly replaced by fear.
In Scottsdale, everything everywhere you look is brown adobe, which I'm guessing they insist folks do, so as not to distract your eyes from the giant brown mountains. Unfortunately, at certain times of day the effect just ends up resembling a big ole pile of gorgeously sunlit poop.
Another disconcerting element I didn't consider until today is that the pooh-brown drug rehab I went to 7 years ago is very close to here.
Which is why, at 6am, as I drove through the murky brown morning, I suddenly had déjà vu....There I was, checking myself into another brown adobe building in Arizona desperately hoping that the people within it would somehow save my life.
Yet again.
The people here at Mayo are incredible. My neurologist Dr. S met with me for a full hour in the am, and following that, I gave at least 1/3 of my blood.
Then, I had a few tests I'd had before (and oddly, didn't miss one bit), except these guys were WAY more thorough. (Translation: MUCH more painful) These tests included the ole "push a needle directly into a muscle & then send electric shocks into that muscle." (In all muscles of legs and arms. Repeatedly.)
Then there's part 2, where they shove a needle deep into you & move it around a bunch & it makes noises & info is somehow poured into a computer. When it touches a nerve it's beyond awful.
But this is just a prelude to another nerve/needle/electricity combo that was so painful it was all I could do not to scream. After I unclenched my jaw, I shakily asked how many more times she'd have to do that.
She said, without a hint of irony "A thousand."
Literally, one thousand more jolts.
Then, it's time for my wrist. Same thing. 1,000 jolts.
The only way I stayed sane(ish) was by remembering that James Franco movie where he's hiking & a boulder traps his arm & he has to cut it off with a Swiss knife. So comparatively, a few thousand electrodes are NOTHING. The oddest part is, after a few hundred jolts, you kinda get used to it. It evolves from someone jabbing a hot screwdriver into your bicep to a bee stinging your arm over and over.
At the end of today, I asked Dr S what he thinks it possibly could be so far.
He said we'll know once blood and test results come back, which is a phrase I never, ever want to hear again.
Despite all this I'm VERY glad I'm here!
If you got this, I love you dearly
Kristen
On November 15, 2013 at 4:36:14 PM Kristen Johnston wrote:
I have a few fun & helpful tid-bits for all you out there who's always drempt of someday going to the Mayo Clinic:
*When anyone says "Not really" in answer to"Will this hurt?," they're lying.
What they REALLY mean is, "More than childbirth."
*Whenever anyone says a procedure will take "20 minutes," this actually means at least 2 hours.
*Having an MRI finally answers this age-old, burning question:
"What would it feel like to be buried alive with the Muzak version of 'Evita' blaring in your ears, all while Governor Chris Christie jumps up & down over & over on the roof of your coffin?"
Not THAT bad, right?
Except for the fact that it goes on for 90 mins straight.
Oh, yeah...and you have to remain perfectly still the ENTIRE TIME.
Which means your face instantly becomes unbearably itchy. It's mental torture. All you can think about is that itch on your nose. On your chin. On your arm.
"Don't think about the itch. Don't think about the itch. Don't think about the itch."
*Last, just when you think "You know, I'm starting to miss having my nerves stimulated with painful electric jolts," are you ever in luck!
Today, I was treated to 2 hours of having 1st my foot & then my wrist be electrocuted.
She strapped something around my ankle, glued a bunch of electrodes all over my head, and WOOHOO!!!! PARTY TIME!!!!
The lumbar puncture (spinal tap) is Mon. Super excited.
I won't have any answers until Tues.
Of course, I'll keep you posted!
Well, I sure hope these nuggets of wisdom come in handy for all you "Mayo-niacs" out there!!!
Love
K
It's hard not to get disheartened. After countless Doctors ( in both NYC & LA), and two weeks here at Mayo, they still don't know what's wrong with me.
Dr. S said it's a 50/50 chance it's either a bug bite & immune system went haywire, OR I have something else, Transverse Myelitis, a neurological disorder affecting the spinal cord. OR something else.
So, the treatment for 1st option is to infuse me every day for an hour with steroids. If I show no improvement, it's time for a muscle biopsy (which can be performed at back in LA at Cedars Sinai). Everything is "and then we 'll move from there."
The GOOD news is, no cancer, bone marrow clean, no tumor etc.
My wbc count is 2.7, which still sucks.
But there is definitely an issue with my nerves & muscles. (Duh). He's narrowed it to top of my spine or base of my brain.
So that's the deal.
I'll be home on Sun & continue my treatment with Dr. L, one of the neurologists.
Dr. S said it's a very confusing case.
No shit, Sherlock.
I'm sure you guys have many questions, so I've asked Dr S to write out his assessment in a email so I can fwd to you all.
I'm frustrated & sad. I just was so hopeful it would be something definitive. I know some of you want to talk to me, but right now I'm not in the mood. Gonna take a bath & crash.
Hopefully, my neurologist in LA can make sense of all these results and give me a goddamn diagnosis.
I LOVE YOU
Thanks for all your support!
I miss you guys.
But mostly Pinky.
Love
K
On Dec 1, 2013, at 1:04 PM Kristen Johnston wrote:Dear Kristen:Your evaluation to date suggests a problem in the central nervous system (spinal cord or brain) that may be causing you weakness. This is supported by abnormalities found on your neurological examination, abnormal somatosensory evoked potential testing (the one with the little shocks on the wrist and ankle, recording over the scalp with the glue-on wires) and the quantitative sensory testing (the test of feeling with the vibrating blunt stylus as well the warm and cold blocks on your hand and foot). Unfortunately we still can't specifically diagnose you, but great news in that there is no evidence of anything like a tumor or multiple sclerosis - the spinal fluid and MRI scans of brain, neck and midback are essentially normal.The preliminary impression is therefore: 1) presumed transverse myelitis 2) possible additional muscle disease of unknown cause (due to a previously mild muscle disorder you didn’t even know you had). Consider this impression as tentative at this point. I have discussed your situation with your neurologist in LA, so he knows where we are. If, after the prednisode infusion you are not noticeably and measurably improved (in terms of strength) in 7-14 days, I would recommend pursuing a diagnostic muscle biopsy of the left shoulder (deltoid muscle.).Sincerely,Dr. S
Hi all....
Thank u so much for checking in....I can't tell u how much it means to me.
Short answer? I'm doing really really bad.
Sorry, there's no 2 ways about it. I am way fucked my friends. Ain't no funny spin I can find.
Basically, what happened is the steroid infusions made me feel slightly better. But 2 days after the 5th & final one I was worse than ever.
It didn't help matters that on Tues my neurologist (very esteemed, kind Dr, in his 60's) looked at all the Mayo results, ran tests & then said that he felt it was time I faced that there was a very real chance I'd never improve.
I was totally shocked.
"Are you saying that at 46 I could be bedridden the rest of my LIFE??!"
"Yes."
"But... I've done EVERYTHING you people told me to! I fucking went to Mayo for 2 weeks! You need to fix me!"
He didn't know what to say, I could tell he felt bad.
"Look, Kristen, I've never seen a case like this before in my life. And I'm old."
Whatever. He took away my hope. I hate him. I'm switching Doctors on Monday.
So that afternoon my family arrives (staying at a hotel, trip scheduled long ago). My mother, sister & her family came to this giant house I'm renting & of course I'm lying upstairs in the bed like Baby Jane & I burst into tears when I see them.
I'm the girl who once left for a semester in Sweden at 15, a semester in Colombia at 16, & moved to NYC at 17 & has always been fiercely independent. I'm now utterly bedridden & unable to take care of herself.
It was decided that I should join them at their hotel for Thanksgiving. (I'd been in Mayo & hadn't even thought abt it...David was leaving to see his family, and I sure as hell couldn't be here alone for three days.)
So Julie's hubby says he'll make sure to book a sweet room for me & Pinky. I stupidly insist upon driving myself there the next day. (I drive fine. Just can't walk. Weird.) I guess I still refuse to accept that I can't do anything I used to.
Ok, so let me give you guys a window into the reality of what this is truly like, without any jokes.
So Julie's hubby says he'll make sure to book a sweet room for me & Pinky. I stupidly insist upon driving myself there the next day. (I drive fine. Just can't walk. Weird.) I guess I still refuse to accept that I can't do anything I used to.
Ok, so let me give you guys a window into the reality of what this is truly like, without any jokes.
I no longer have any strength in my upper spine, so unless the neck brace is on, my head flops totally forward onto my chest. All my muscles are gone, I'm so, so thin.
In the early afternoon, I begin. All I have to do is toss a few things in a duffle bag, and Pinky & I are off. A task that would take healthy Kristen about 5 minutes.
Here's how it really goes, now that I'm this creature...
In the early afternoon, I begin. All I have to do is toss a few things in a duffle bag, and Pinky & I are off. A task that would take healthy Kristen about 5 minutes.
Here's how it really goes, now that I'm this creature...
Shove stuff in bag. Lie down, rest 15 min until heart rate calms & lactic acid leaves trembling arms & legs.Drag bag to balcony. Despite containing my computer I shove it with my foot until it tumbles down stairs.
Go back to bed, Rest 30 mins.
Pull on leggings. Rest.
Shirt. Rest.
Shoes. Rest.
Pull on leggings. Rest.
Shirt. Rest.
Shoes. Rest.
Put on neck brace & lie in bed, trying to work up the strength to move.
After a long time, I know it's now or never.
I slowly shuffle toward stairs. Pinky follows.
I slowly shuffle toward stairs. Pinky follows.
I sit on stairs and slowly slide my bony ass down each step.
Exhausted, I lie in a puddle at bottom of stairs. My heart pounding, legs aching.
I pull bag on wheels outside & lie on chaise. So utterly exhausted I know I can't even walk back the few steps to shut the door (later, I have to call a friend to do it.)
I stumble down the outer steps to driveway & lie facedown on asphalt, weeping.
Legs trembling, I crawl in car, Pinky hopping in next to me. Rest.
With the last reserves of my strength, I somehow shove the bag in car.
I sit there, gasping, heart pounding. I can't fucking believe this is my life.
I started this process in the early afternoon.
It's dark now. I arrive at the hotel at 9 pm.
Exhausted, I lie in a puddle at bottom of stairs. My heart pounding, legs aching.
I pull bag on wheels outside & lie on chaise. So utterly exhausted I know I can't even walk back the few steps to shut the door (later, I have to call a friend to do it.)
I stumble down the outer steps to driveway & lie facedown on asphalt, weeping.
Legs trembling, I crawl in car, Pinky hopping in next to me. Rest.
With the last reserves of my strength, I somehow shove the bag in car.
I sit there, gasping, heart pounding. I can't fucking believe this is my life.
I started this process in the early afternoon.
It's dark now. I arrive at the hotel at 9 pm.
And that is what it's really like.
I will fight this thing, hard.
But I will not live like this for the rest of my life.
Sorry, maybe I'm a pussy. But I can't be this THING for the rest of my life.
I'm seeing new autoimmune dr & new neurologist Mon (Drs 16 & 17, including Mayo) on Mon.
But now this show I adored, worked so hard on, I'm now dragging the whole thing down. If something doesn't change in the next week or so, I'm going to beg them to fire me.
I will fight this thing, hard.
But I will not live like this for the rest of my life.
Sorry, maybe I'm a pussy. But I can't be this THING for the rest of my life.
I'm seeing new autoimmune dr & new neurologist Mon (Drs 16 & 17, including Mayo) on Mon.
But now this show I adored, worked so hard on, I'm now dragging the whole thing down. If something doesn't change in the next week or so, I'm going to beg them to fire me.
Having some dark, dark days, my dear old friends.
Relish your legs. For me.
I really love you.
Relish your legs. For me.
I really love you.
KJo
On Dec, 16, 2013 at 1:05 PM KRISTEN JOHNSTON wrote:
FINALLY.
It only took 5 months, 2 weeks at Mayo, and 18 Drs to FINALLY diagnose me with.....Lupus Myelitis!!!!
I've been tested before for Lupus, many times, all negative. But last week I saw Dr. Wallace, lucky Dr. 18 and an expert on Lupus and auto-immune diseases, and he was immediately fairly certain I have a rare form of Lupus, Lupus Myelitis (or Lupus Myositis). So, he submitted labs for a very specific Lupus test , and it's positive!
I never imagined I'd be so happy to have a diagnosis of chronic disease in my life.
But at least now we KNOW. At least we can take ACTION.
I figured you'd have many Q's.... I pulled this from a Lupus website.
It's not curable, but very manageable through meds & nutrition.
I'm in a rush to try to shuffle to work (in 1 whopping scene this week), so there you have it.
Thank you all for your support.
Oh, and all F-bombs removed cus my mom doesn't like foul language.
Love
K
Goddamn Fucking Lupus!!! (sorry ma)
What is lupus?Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).These are some additional facts about lupus that you should know:
- Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.
- Lupus is unpredictable: It is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Knowing that lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments.
How is lupus treated?On Dec 17, 2013 at 3:30 PM Kristen Johnston wrote:
Lupus symptoms vary from one person to another. In many cases, the best treatment approach is with a health care team that will tailor treatment to your specific condition.
Today, physicians treat lupus using a wide variety of medicines, ranging in strength from mild to extremely strong. Prescribed medications will usually change during a person’s lifetime with lupus. However, it can take months—sometimes years—before your health care team finds just the right combination of medicines to keep your lupus symptoms under control.
There are many categories of drugs physicians use to treat lupus. However, the U.S. Food and Drug Administration or “FDA” has approved only a few specifically for lupus, which include:
- Corticosteroids, including prednisone, prednisolone, methylprednisolone, and hydrocortisone
- Antimalarials, such as hydroxychloroquine (Plaquenil®) and chloroquine
- The monoclonal antibody belimumab (Benlysta®)
A rheumatologist, a doctor who specializes in diseases of the joints and muscles, generally treats people with lupus.
- Aspirin
Once you have been diagnosed with lupus, your doctor will develop a treatment plan based on your age, symptoms, general health, and lifestyle.
Hi Guys,
Looks like I get to spend another Christmas in the hospital. Can't wait. (actually, I'm so excited to have a diagnosis, I really CAN'T wait.)
Lemme explain: It's official. I have a "Lupus Myelitis" (or Myositis) which is…
"An inflammation of the skeletal muscles that causes weakness and loss of strength. Lupus myositis often affects the muscles of your neck, pelvis, thighs, shoulders and upper arms; difficulty in climbing stairs and getting up from a chair are early symptoms. Later symptoms may include difficulty lifting objects onto a shelf, lifting your arm to comb or brush your hair, getting out of the bath, and even raising your head or turning over in bed."Gee….that sure SOUNDS EXACTLY like my symptoms. IN EVERY SINGLE WAY.
Yet, NOBODY could figure it out?????? I'd been tested for Lupus, a number of times, it was negative. What I didn't realize, is there are many different tests. They just didn't do the correct one. (Seriously?!!??)
So heres my deal…..I'm checking in to Cedars 7am Thursday for 5 fun-filled days of IVIG, steroids, chemo and a whole bunch of other stuff. Dr. Wallace said if this works (and he's completely confident it will), I should feel WAY better within a week.
One week.
5 bedridden months spent in a quagmire of confusion & loneliness, and it could have been solved in A WEEK. To say I feel frustration would be a gross understatement…
There's not only the hellacious nightmare I've gone through, the SHITLOADS of money I've spent, the thousands of hours spent in Drs offices, what my friends, family and all the people who had to endlessly take care of me & feed my dog did…There's also this tv show, that I love so passionately & believe in so much.
I know, I know, it's "just a TV show, your health more important", and of course I agree…but this is my career, my passion, my joy. I love it. I've worked so hard for many years to be sober & sane enough to appreciate it, and to me it's almost as important as anything else.
Just imagine all written scripts & planned plots being tossed a week before production. Not to mention imagine trying to write a different script, unsure if I'd ever be healthy enough to do it. Mark and all of the writers re-writing constantly, never sure if I'd even be able to show up, the actors trying to rehearse w/my stand-in, the stress on everyone "Does she have a tick disease? Oh, Thyroid? Now they don't know? When will she be better? Does she think she can do 2 scenes? Can this be over yet?", Mindy & all producers in a perpetual state of scrambling & solving, all the talk shows & press I was supposed to do, promotional stuff, all cancelled, Sheryl the wardrobe gal dressing me as I lay on my couch, sobbing, David, who somehow did my hair in same position, while I tried to put on my makeup, etc etc, etc...
It felt like we all worked so hard for 21/2 years to reach a common goal & suddenly it was gone.
So many Dr's, so many opportunities to help me get better. So many agonizingly painful tests, all for naught. THAT IS WHY I"M PISSED.
I mean, why on earth didn't Dr. L, the guy who said (when I came back from Mayo) " You know, there's a good chance you'll feel like this for the rest of your life", that he was "baffled" by my case, and "had never seen anything like it in his 40 years in the medical field"….Why didn't he JUST SEND ME TO SOMEONE ELSE?
How can all these Drs Why just shrug their shoulders & give up? How?
I have great insurance, access to brilliant Doctors & hospitals.
So if I was screwed, what about all those other people with no insurance, funds, access to great medical care? What are they supposed to do?
I'm filled with equal parts relief and rage, it's the oddest feeling.
Love, Kristen
On Dec 22, 2013, at 1:20 PM, Kristen Johnston wrote:
Hi all...
Well, as I'm sure you saw from the multitude of news stories, I have Lupus & am dying. (Kidding! But some of them sounded that dramatic! Slow news day, perhaps?)
I wanted a few weeks to recover from the Lupus before people knew, so I was intentionally non-specific with the press, saying only that it was an auto-immune disorder.
Sadly, people started saying really cruel things, making up awful rumors... that I had HIV, was dying, was just "trying to stay in the news" (??), even that I'd relapsed, etc.
So the next day I wrote on Facebook that I have Lupus Myelitis, to put an end to all the stupidity.
I would've preferred a month to acclimate to what I have & become more informed before everyone else knew...but as the song goes "You can't always get what you want..."
I checked into the hospital first thing Thurs to begin my treatments and I was shoved in the most depressing, tiny, beige room I've ever seen in my life .
The man next door was older than dirt & clearly the only objective he had left in life was to cough. Endless, loud, non-stop hacks. Then an occasional moan. Silence. Dead? ...and the coughing began anew.
The only thing preventing me from leaving was the fact that I was connected to a machine pumping steroids into me, and that I still can't walk.
I just lay there, getting more freaked out & pissy & weepy until finally Dr Wallace came by.
"I HATE IT HERE" I said and he laughed.
"Kristen. You have an enormous amount of steroids in you. OF COURSE you're miserable."
We had a long talk about what medication would be ok to give me to chill me out, and we decided one Ativan would be okay. (Benzos were never my thing.) So that helped A LOT. Then, they started with the rounds of IVIG & chemo.
I was there 41/2 days, came home yesterday, and I really do feel MUCH better! I'm still weak & all that, but better.
Dr Wallace has a whole plan for me. Basically, I see him Fri where he's gonna hook me up w/a physical therapist, and start me on a daily pill called Plaquenil that supposedly works wonders. He wanted to wait to make sure all these IV drugs accepted ok first. I get IVIG infusions every month for 6 months.
Dr Wallace, a lovely man (who read my book, how cool is that?!), said he's fairly confident I'll be in full remission in 6 months-year.
Until then, I'll get better & better every day.
We hope.
I wanted to start on physical therapy this week, but he doesn't want to push it...he said my body is adjusting to A LOT.
So that's where I'm at.
Listen. I know I've said this to most of you...but THANK YOU. For all the love & care you've shown me. The visits, the emails, the concern...I feel very loved.
I can't WAIT to kick this fuckers ass once & for all!
Sorry for the F-bomb ma! But you gotta admit, in this case it fits!!!
I love you all & thank you so much for loving me.
I'm excited to slowly get back to work in a few weeks!
Love
Kristen
There it is. My story.
Now I can move on.
I hope it helps someone out there feeling lost & lonely.
Love
KJo