Archive for the ‘Running’ Category

Behold a significant nerve symptom: dropped feet.

See how, when at rest, my feet are almost pointing?  Apparently, normal feet remain in a 90° angle to the ankle (or close to it).  I’ve been like this for as long as I can remember, never thought anything of it.

Now, back to the day’s festivities…

This morning (the deleted post)
The head neurologist showed up with my other doctors on a surprise visit, saying I had the largest example of this type of tumor he’s seen in his 50 years of practice and that I’m a “very special lady” because there’s no literature anywhere of someone presenting with my symptoms. He’s convinced it’s pressing on nerves and some organs.  He also says I’ll lose 10lbs once it’s gone and “you’re gonna run so much faster!”  Love.

The reason I deleted the post was that 20 minutes later, a liver guy comes in, very dismissive, palpates me, says it’s nothing and not related to the symptoms in any way and that “people live with these all the time” but then goes on to say “Of course, I haven’t seen any of your films yet, but…”

A little while later, 5 docs from the neurology team come in to tell me that guy was full of shit, he’s just filling in for the weekend and hasn’t a clue of what’s going on.

But wait, there’s  more!
I have the deluxe variety pack of doctors working on this, and I just met with an orthopedist (not the main ortho guy, though).  He saw my neck MRI and thinks the leg weakness and proprioception problems are consistent with Cervical Spinal Stenosis.  In layman’s terms, the column of my spine at the neck where the nerves run down is getting smaller, putting pressure on the nerves.

He’s convinced his is the golden egg.  As he said, if the tests are consistent with the physical examination, everyone thinks it’s their department.  Anyway, it can happen with a serious disease or best case, simple vitamin deficiency.  There’s a shitload of my blood in vials that will eventually come back with answers on that score but if it’s not vitamin deficiency, I’d need spinal surgery.  I’ll talk to the main ortho guy on Monday.

He does make it sound pretty scary, that I need to be sure not to do physical stress until this is taken care of.  But an interesting note: when I asked the ortho about my dropped feet he said “I don’t know anything about that, that’s neurology, not ortho.”  Okay…

More MRI Dye fun
Meanwhile, had a liver MRI today that needed dye and since I’ve discovered I have an allergy to it, they gave me prednisone at 1:30am last night, then again with bendryl about a couple hours before the test.  It helped but I still ended up getting hives while in the tube.  This sucks since I’m  destined to need more contrast dye MRIs in future and there are no magic potions to avoid it.  It was bearable but means if I’m an outpatient, I need to prep before I come in and even then will end up in polka-dots.

Rebuttal to the ortho
So the day went like this: neurologists, then the liver dismissive guy, more neurologists, liver surgeon, liver MRI with bonus hives, then the ortho guy.

Meanwhile, the doctor who admitted me in the first place, cool woman, I like her a lot, is back on the floor and talked to the ortho guy right after he saw me.  She thinks he’s full of shit.  She has hyperactive reflexes too and everyone has Cervical Stenosis to some extent.

Roommate
Ernestine, a talkative older lady moved in today.  She wants to talk about Easter, baseball and seagulls that swipe your food at the shore.  I should hook her up with the hawk murderer mentioned a couple posts ago.  Anyway, I apologized but said I really wasn’t up for talking so the curtain and monosyllables are protecting me.

Damn, now it turns out she could go home but her son thought she was here till Monday so he can’t take her and the rest of her family have “sticky fingers, they’ll steal everything” so she’s not even calling them.  I’m praying she finds someone to take her home tonight.

Time to hang pictures
I’ve been told to expect to be here another week. sigh

Had to delete the post I just uploaded due to conflicting information.  Gonna lay off the updates until I have definitive answers.   Apologies to those who commented on it.

Just to explain what’s going on.  If you haven’t read the edit to the last post, I went down for a biopsy, got as far as the ultrasound (and a light dose of happy drugs, yay) but then they figured out it was hemangiomas in my liver.  That means blood is pooling there into two very large areas (9cm and 5cm) and one medium area; this could have been happening for months or years.

One theory about my current state, though would be rare (though the whole situation is clearly weird) is something called “steal syndrome”, that when I run, the blood to my legs is somehow being routed up towards the liver, which would explain the weakness and the fact that I recover from it after some rest.  But this is all guessing at this point.  And also, maybe it’s pushing on the sciatic nerve, causing the nerve-type problems.

What’s super cool is that my shoe photo from a few posts ago, that I thought illustrated my gait changes, is actually dead-on proof of the deterioration in my gait.  My doctor liked the photo so much, he wants to use it for a medical paper.  I’m so fancy.

Oh, and one more weird symptom I remembered to share with him that he found interesting, is that right before I go to deep sleep, my right leg (the affected side) does one hard, fast kick, which wakes me up a bit but then I go to sleep.  He think it’s pressure on the hemangioma doing this.

Now, while it’s wonderful it’s not cancer, it’s still a bad thing to deal with.  Getting rid of it will require some type of procedure and it’s complicated because of the amount of blood involved.  And the doc  mentioned that if they couldn’t handle it here he’d find the best people in the country to deal with it, which sounds kinda major.  But as long as it’s not cancer, I can deal.

Meanwhile, I’m stuck in the hospital for at least a couple more days for more tests but that’s ok.  Have laptop, will mentally travel.

EDIT…FALSE ALARM!!!!  Not masses but hemangioma which is not as scary!  It doesn’t explain my problem yet but is likely included.   I went down for a biopsy and someone figured it out.  I’m still a medical mystery and people are coming to my room to observe my wackiness, but the main thing is it’s not spooky shit as of this moment.  Read the next post for what I learned right after posting this one.

The last few days have been a surreal experience. Starting with the last run attempt on Tuesday, which I had such high hopes for (I just knew it’d be better) only to find the crippling effect unchanged, I calmly returned home, put on some jeans, filled a handbag with unread Running Times, protein bars, water and walked a rickety mile to the Emergency Room of my local hospital. It was about 4:30.

Emergency Room
Not many people at all. I sat down across from what turned out to be a gross candy-sucking lip-smacking person, so I moved to the end of the row where, within 3 minutes, a morbidly obese woman was wheeled adjacent to me and promptly threw up in a pan. I was not at all sweet and understanding, but murmured “oh fuck” and moved back across from the candy-sucking lip-smacker.

I didn’t have to wait long to get taken back, which was pretty spectacular. Once I’m in my gown and waiting for the action to begin, I hear “You have a lot of poop in you, we have to get all that poop out. Don’t fight me, keep your hands away from there, we’re going to get all that poop out of you.”  Also, my bed is next to the bathroom and after some drunk-looking guy goes in, I hear loud retching.  He comes out and the nurse asks him to put on a gown but he tells her “you don’t want me to do that, I smell so bad under these clothes, badder than bad”.  She finally convinces him by allowing him to wear 2 gowns. But back to me…

My story was a mystery to all I recounted (I’ve repeated it about 25 times so far). At one point I was back to doubting myself, though the main doc said that although he couldn’t imagine what it was, it was most certainly not in my head. This became fact once the neurologist appeared at around 10:00pm.

Neurology tests are fun things: touch your nose then touch my finger, close your eyes and balance, how many fingers am I holding up? Can you hear this? This? Press up and I’m going to press down, c’mon press as hard as you can…etc. The turning point was when she checked my reflexes and got to my knees. Nothing. “Well, you’re laying down now, no need to worry, we’ll change your position, sit up” Nothing. But my ankle and upper body reflexes were totally normal.

She leaves and comes back at around 11:30pm and tells me the symptoms coupled with the lack of reflexes and something about how my foot presented is worrisome so I need to be admitted. I have a voiceover job confirmed for the next morning so I frantically call the studio and leave a Facebook message for the producer but I know it’ll be a very unhappy situation for them. But I can’t not do it, I know this.

In The Room
I have a great room all to myself, very luxurious! Also, I’m not tethered to any machines and the only time I need a nurse is for “diet ginger ale with a big cup of ice, please” or for them to tape a bag around my IV plug so I can shower.

The doctors here are phenomenal. Nobody tries to hide information and they’re all very receptive to my questions.  For all the “stay away from Google” warnings, I’m really glad I did some homework, it enabled me to have some decent conversations about possibilities and things affecting things. Their initial thought was that it was an auto-immune syndrome, Guillain-Barre but an MRI found something else.

Lumbar MRI Drama
I did the first part of the MRI just fine but then they brought me out for the contrast dye, which they inject into your IV and within seconds of going back in the tube, I start itching on my hips first, then my feet and legs and back. Now, you’re supposed to lie totally still but I’m dying to scratch my feet and everything else, it took a real test of will to remain motionless. Meanwhile, I realize this has to be an allergic reaction so I keep attention to my chest. I figure as long as my lungs are fine, I can suffer through it.

I come out of the machine and am covered in huge red hives from feet to hips, back and arms (chest and face spared). Apparently this is a rare reaction to the contrast dye so there’s a flurry of activity while a doctor is called. I get Benedryl and laugh with my audience of 6 who have amassed for the occasion. No biggie, I’m wheeled back to my room and “MRI Contrast Dye” becomes my virgin entry into “Are you allergic to any drugs?”

Later that afternoon, my doctor, who is a teddy-bear kind of guy, sooo sweet, carefully tells me a mass had been discovered in front of my spine though it’s not clear where it’s located or what organs might be involved yet. The worrisome thing for the doctor is the MRI cuts off around the rib cage yet the mass extends beyond, so it isn’t clear how big it is. A CAT scan is ordered to see exactly.

It was strange being told this. I didn’t get that upset. I asked some questions and he told me what he could, though not knowing the full extent, he had limited information. The next day when he came back, he told me I was taking the news amazingly well and that after he left me the day before, he almost came back because he thought he’d scared me.

But to my own surprise as well as his, I thanked him for worrying about me but that honestly, I had such a strong support system behind me (you guys), people who cared about me that I didn’t feel scared. That there’s no point in freaking out until I know what’s what.

More Neurological testing and why my symptoms are weird
By Day 3, I’d had 4 doctors doing that hands-on neurological testing with me. Another symptom I was displaying involved this metal instrument they use, a tuning fork type thing. They use it for the vibrations and heat/cold. What they do is rest it on various spots (the shins in my case) and ask “does this feel warm or cold?” and as they run it up my leg, ask if it felt colder as it moved. Both legs were noticeably cold around the ankle and towards the knee but shared a clear area of dimmer sensation in the lower/mid shin.

What’s weird about this beyond the “deader” spots is that it was the same for both legs. Since the mass is on one side, it should only be affecting the one leg. The mass, btw, is on the right side and that leg shows a clear weakness. The test where they have you push or pull your leg towards and against their hands was clearly problematic compared to the left.

Another oddity is that I seem to rejuvenate from these episodes, in that I’ll retain the weakness for a while but after a few hours, don’t feel weird at all.  So walking to the hospital was the first unbalanced weird walk I’d done since it directly followed a failed run.  I know that had I been allowed to walk home after, I’d have felt normal again.

A visit from Pulmonary Doctors
I had mentioned my breath in races to the doctors due to the potential Claritin connection but didn’t think that’d be addressed during this visit, but they said they’d get some Pulmonary docs to look at me. One pays me a visit and asks me questions and as usual, I feel like a faker when I talk about it since it only happens in races and maybe it is just loud hard uncomfortable breathing and that I’m a whiny hypochondriac.

But the doctor looks very interested when he asks about my past smoking. I smoked cigarettes for about 15 years, starting around age 16 and was up to 2 packs a day for probably close to a decade but quit about 20 years ago. As most of you know, I also smoked pot on and off through the years, but finally quit for good 2½ years ago.

Anyway, a few hours later, he and 3 other pulmonary doctors come to talk to me and I’m asked more questions about when the breathing problems arise and I’m totally expecting them to say it doesn’t sound worth pursuing.  Much to my shock, the main doc tells me that in looking at my chest x-rays they saw some damage.  Potential COPD is mentioned. She makes it clear that it’s not a scary thing, just that I should get pulmonary testing while I’m there and that I’d definitely be helped in races with an inhaler.  Finally!

With this news, I shed my first tears.  The doctor makes concerned sounds and looks worried for me, as do the 3 other docs but I have to explain that these are tears of joy and release.  I have a reason!  It wasn’t imaginary, it was real.  When all this is over, I’m going to be the racer I want to be.  It’s a gift.

CAT Scan
Until now, I’ve had wonderful nurses but yesterday I had that previously mentioned dingbat. I’m starving for breakfast and as soon as it arrives, she rushes in and tells me not to eat it, that I have to drink some pre-something solution for the CAT scan (about 40 oz of a Banana smoothie type thing) and that I can’t eat food for 4 hours. Nice, thanks for warning me.

I mention my allergy to MRI contrast dye but she doesn’t talk to anyone about it for 2 hours. Finally, she calls the CAT scan people and they tell her I need to take prednisone (a steroid) so I don’t get a reaction and also, can’t take the CAT scan till 12 hours after the prednisone. So now I’ve missed breakfast, drunk masses of unnecessary gross white shit and now will probably have to wait till tomorrow for the CAT scan and answers. Grrrr.

In the meantime, I get a brain MRI (no contrast dye this time) which comes out fine, no abnormalities.  Yay!

A couple hours later, I learn that MRIs and CAT scans use entirely different types of dyes, so I didn’t need the prednisone after all and could have had the scan as planned.  Instead, at 2pm I have to drink 2 more bottles of that prep crap and at around 7pm get the test.

Symptoms I didn’t tell you about
I was too embarrassed to admit this earlier but this one made me feel so decrepit I didn’t dare.  In that 5k a couple weeks ago, starting somewhere in the 2nd mile, a little piss came out. That’s nothing huge, it’s not unusual for a woman my age, even younger woman can leak a bit when doing such a hard effort, but this wasn’t just a leak. I ended up pissing a whole bladder’s worth of pee while I was running. It was mortifying.

Here I’ve spent all that time doing peaceful, positive mental work to run this race anxiety-free and suddenly, I’m passing some guy I know in total humiliation imagining him and everyone else staring at the blooming ass puddle on my shorts.  In the end, I guess it passed for monumental ass sweat because he chatted with me afterwards with no indication of anything.  And at least I was well hydrated so it was clear water pee and not stinky, but still, I was wondering if I was going to need Depends for the rest of the race season.

So again, while this thing inside me is bad news, to discover it was the cause of my urination extravaganza is relieving (yuck yuck), to say the least.

The other symptom, not as interesting but notable, is that I’ve been kicking myself in the ankles a lot, hard, drawing blood on my right ankle. I knew, from having done that with my stress reaction that it meant something was unbalanced, but I’ve been niggle-free for a long time now which did make me wonder why it was happening.  It took a lot of concentration to diminish it to only a few “ankles kisses” per run as I called them, positive me.

Grand Rounds this morning
Because mine is a curious case, my doctor asked if I’d like to be included in “Grand Rounds” today where the head neurologist discusses a patient with students.  It’s a wonderful opportunity to be seen by the best of the best, so I jumped at the chance.

I was wheeled to an auditorium and sat outside with two other patients to take our turn. One was a Catherine O’Hara lookalike in great pain with headaches and nausea, the other was a funny woman with electrodes stuck to her head who had epileptic seizures but her main complaint was that “spirits are leaving her body”.  Chatting with her before my turn, I learned she was also a clean freak and if someone puts something in the wrong place, she could kill a hawk.  Hawk murdering arose a few times in our conversation – don’t know what she has against them but she was entertaining.

Headache lady went first, then me.  It was a cool situation, lots of smart faces staring at you while the fancy doc, Dr. Shwartzman, asked questions and did some neurological tests, explaining what my replies indicated and what his testing found.  At one point he said, “ok, tell us about your bladder” so I recounted the 5k story in my inimitable way, to great laughter.  It was huge fun.

The weird thing though, is that he found the left leg weaker when the other times it’s been my right leg!  Very weird.  I look forward to my doctor coming to talk about it as he said he would later.

Thanks
Once again, I need to thank my buddy Lara, who has provided tasty snacks, phone charging, beautiful company, many laughs and is responsible for this post for having retrieved my laptop from my apartment yesterday.  Love you, Lara!

The outpouring on Facebook continues to floor me beyond belief.  I honestly would never have imagined all this attention and love, tons of people posting “this is Flo and me” photos, even Photoshopping photos and drawing us together and maps between me and them…it’s beyond anything, a tsunami of caring.  As I commented somewhere in all that, I never realized how rich I was till now.

And while my first tears were for the pulmonary discovery, my second came when I peeked in at my 3:20 forum pals and saw people ran “5 GIM miles”, “7 GIM miles” etc.  That fucked me up, you crazy fools!

It’s like telethon stuff but I don’t even feel sick or sad.  I’m sure that’ll change but for now, I just feel unworthy.

Wrap up for this one
One very important point in all this, is thank god I’m a runner!  I don’t feel anything strange at all walking around and have no pain whatsoever, so it would surely have been months before I’d have reached a point of noticing it.

At the moment, I’m starving because I’m told I’m supposed to get a biopsy today but nobody has said when and you can’t eat 4 hours beforehand.  My doc should be here before long with news about the CAT scan too.

Not sure what my day holds, though I do know I just paid a $500 copay for being here.  Funny how that didn’t phase me either.  Nothing’s getting me down about any of this, it’s so weird!  I swear I’m high on love right now.   Thank you all, my friends. xoxoxo

Just after I pressed Post…
I had to unpost it.  A doctor walked into the room. Biopsy is any minute now but I know at this point that it’s 2 masses, bigger one going in the liver but doesn’t originate there, they think it might be in the colon but not sure yet.  Still a curiosity as to the nerve problems.  The doctor, a really sweet gal, thought someone had already told me this last night so I felt bad for her for breaking this to me (she came in talking about it as if I’d already known…awkward)

Why am I not crying? I’ve always been a crybaby in life.  Not even freaking. I’m a bit…ooooh shit.  But I dunno, I guess I’m just waiting to see what’s next.

First off, I did a super stupid thing yesterday: in mass deleting Facebook emails off my server yesterday, I managed to delete all emails sent to my girlinmotion address, so if you sent me one, I’m so sorry for not replying to it, I didn’t get to read it.If you can resend it, that’ll be wonderful.

I gotta keep it short but due to an idiotic nurse error (they’ve all been great except this one extreme ditz), my CAT scan won’t be possible till tonight or even tomorrow. I need to slap the shit out of this woman. Other than that, just got a brain MRI.

Something amazing is happening though to do with my breathing in races. Pulmonary doctors see signs of damage on my lungs from when I used to smoke. I’ll write more later but there’s a real reason I had those issues! This is actually incredibly wonderful news. All this time, thinking I was dreaming things up. No words.

So I’ll be getting a full round of pulmonary tests to see what’s what. To think I was doing pretty good with these unknown interferences bodes so well for future running (provided I get back to baseline with whatever’s going on with the rest of me).
I will say this again later, but I can’t believe the outpouring of support on Facebook. You’d think I was dead already from the action on my Wall. Amazing.

A shout out to my dear friend Lara who has been taking care of me so beautifully with treats and a good memory for what’s been said to me.

Probably the best way to see updates is to check my Facebook wall www.facebook.com/flo.karp because it’s a major pain in the ass to write in the blog with the iPhone.

Later, my loves.

Afternoon edit: (in my best Schwartzenneger voice) It’s a tumor. In front of my spine, not sure where exactly, abdomen area. CAT scan tonight. Will have info tomorrow.

Just a short one for my non-Facebook friends. I’m typing this on my iPhone so excuse the brevity.

Yesterday after another freaky attempt to run I went to the emergency room. After a neurologist came and couldn’t get any reflexes from my knee, coupled with my symptoms, they admitted me. The thing they’re suspecting first is Guillain-Barre. Big suck. Looks like I’m not going to California tomorrow but I’m still hoping. Anyway, wanted to keep you guys informed. Send good thoughts please.

Love,
Flo