Tag Archives: mystery illness

Where The Girl Has Been – Part 2

There are 2 main types of thyroid medication. The most commonly prescribed is synthetic T4. The other is natural dessicated thyroid hormone (NDT). It’s derived from pig thyroid and provides both T3 and T4. That’s the one I wanted.

Not a lot of doctors prescribe NDT but I found one in Richmond, a D.O. which, in the thyroid world, is generally recommended along with functional doctors over endocrinologists, since endos are known to treat by numbers rather than symptoms.

I made an appointment, thrilled that at long last, my nightmare was coming to an end.

The Appointment
After recounting my long tale, I hand over a timeline of previous TSH results along with the thyroid lab report. I mention a thyroid nodule found on a cervical scan last year but he dismisses it. He does, however, confirm I have Hashimoto’s.

He goes on to tell me that because some of my symptoms don’t fit, I’ve probably got an additional autoimmune disease (when you have one, you’re susceptible to more). I am surprisingly unfazed by that, my relief at finding someone who seems ready to get to the bottom of it all eclipses everything.

I’m a little taken aback though when, upon my mentioning something I’d read in my online thyroid travels, he rolls his eyes before making a disparaging comment about those “sites” (he actually said it like there were quotation marks around it).

Now, dear readers, due to an enormous amount of crappy or non-existent treatment, the online thyroid world is a sizable presence. Between discussion boards and advocacy sites, there’s information, experiences and data out the wazoo. I’ve been lurking on several sites for 4 months straight, and from the lab interpretations and discussions I’ve seen, I have a huge amount of trust and respect for the people who devote their time to analyzing and advising others in such a consistent fashion. And it is consistent from site to site, which lends more credibility to that information.

So when he tells me the dosage of NDT he’ll be prescribing is 1/4 grain, and that I’ll stay on that dose for 5 weeks before reevaluating, I recognize instantly that this is bad news.

Thyroid dosing is a slow process, taking months to find the correct dose, but common wisdom from all those “sites” (I sneered as I wrote that, because it’s fun to do) is that starting on too low a dose or staying on a starter dose longer than 2 weeks is likely to make you feel worse than not taking anything at all. What he was prescribing was both too low and too long. But he was adamant, “This is the way I dose NDT”.

I left with mixed feelings, unhappy about the dosage but reasoning that at least he was going to find out what else was wrong with me. For that alone, I could handle feeling like shit for a few weeks.

12 days later
I call the doctor’s office, beseeching him to please raise my dose to 1/2 grain. This, because I’m shivering cold to the bone, depressed as hell, my purple feet are now turning white, my fingers are twitchier than ever and I’m experiencing air hunger. Misery.

No reply for a couple days. Then I get a phone call from his receptionist – she has called to recite the doctor’s notes concerning labs I took the previous week – tons of tests actually: food allergies, sex hormones, complements, celiac, lyme, thyroid, ANA and more. Some stuff was fine, some was out of range, and for those items, the doctor’s notes were “I don’t deal with that” or “it’s inconclusive”.

Then the receptionist tells me the doc has agreed to raise me to 1/2 grain, but it’s accompanied with an admonishment, “Remind Ms. Karp that this is a long, slow process and blah blah blah”. And even more punishing, due to the dose increase, he makes me reschedule my next appointment 2 weeks later than originally planned. That meant I would remain on a shitty little dose for 7 weeks straight.

Over the next few weeks, I felt way better than on 1/4 grain but still crappy. I had to gave up run/walking completely, sticking to brisk walks for exercise instead. But I also made a wild discovery, one I was SURE would help the doctor figure out my troubles.

Another Crazy Symptom
When taking thyroid medication, there are a couple ways to monitor the effects: heart rate and temperature. I had started taking my temperature throughout the day – my usual waking temp is around 96.9 and during the day is 96’s-low 97s. That’s not unusual, hypo people are cold. But in my special snowflake case, it gets a little more interesting.

One day, when I was still run/walking, I get back into the apartment and think, “hmmm, I’m hot and sweaty, my temperature’s gotta be around 98.6, let’s see!” I stick the thermometer in my mouth, which takes an unusually long time for its “done” beep. And the result is: 92.5.


Thinking the thermometer must be broken, I take my non-digital thermometer and stick it in my mouth for 4 minutes. The faux mercury doesn’t even approach the first number (the thermometer’s lines start at 95). Shit’s real.

From that point on, I take my temperature after any activity, whether it’s a walk to the grocery store, housework, anything…without fail, it’ll be weirdly low and then, over the next 15 minutes it’ll inch up till it’s normal again. This happens every. single. time.

Of course I searched the web for explanations, but all I found was a random forum thread indicating adrenals. But as my doctor said in the first appointment concerning adrenals, “I don’t believe in adrenal fatigue, either it’s working or it’s not”. I didn’t have a big opinion on his viewpoint, adrenals are considered important on those “sites”, but I figured that if not adrenals, he’d have an explanation for why this was happening. I was confident he’d find this new clue super helpful.

I carefully graphed out these low activity temps and anxiously awaited the next appointment. I also rehearsed how I’d request more reasonable dosing. To that end, I printed off the prescribing information for my NDT (Naturethroid) and its competitor product, which both state initial dose is 1/2 grain and dosage should be increased every 2-3 weeks. (Note: on those “sites”, 1 grain is a common starting dose, but I was pushing the conservative route, the better to get him on board)

In my spiel I’d make it clear that he needn’t fear me going hyper from overmedication, that I would be monitoring heart rate and temperatures. Nothing would catch me by surprise!

The 2nd Appointment
Because I was convinced that my low exertion temps were a major clue in whatever else was ailing me, the first thing I did was present him with the cute graph I made. In my imagination, he jumps up and says, “By Jove, That’s It!”, explains what it means, gives me the cure and I live happily ever after.

What happened is he snorted and said, “That’s odd”. I ask what it indicates and he says, “No idea.” When I ask if any of his other patients have experienced anything like that he says (snorting again, because I’m obviously psycho to have taken my temperature a bunch of times and put them on a graph), “I don’t know, I don’t think anyone’s taken their temperature like that.”

Then I make the mistake of saying, “The only thing I could find about it online mentioned adrenals” and he replies, “I told you before I don’t deal with adrenals”. I ask what kind of doc would know how to deal with this, an endocrinologist? He gives me a doubtful look and says, shrugging, “You could try a naturopath or some other alternative doctor….”

Seriously? Mainstream medicine can’t be bothered with unusually low body temperatures? That’s “alternative”?  But what I said is, “If I had a fever, a regular doctor would consider that worth treating, how is this different?”. Another shrug.

Then we go over my latest test results and of course, just as the “sites” foretold, all my thyroid numbers were worse. And a couple of the “inconclusive” results from the previous tests were still out of range. One of these, low Complement C3, didn’t have much online about its significance when paired with normal C4 & CH50 (I’m pretty sure I don’t have malaria), so I asked what it indicated thinking he could explain more than Google. He just said, ‘it’s an immune marker”, so I ask what that means, as in, “Ok, what will you do with this information?”. Crickets.

Then it came time for “May we please dose me per the manufacturer’s prescribing information?”, to which he replied, “You know how I dose NDT, if that doesn’t work for you, you should find another doctor”. Defeated, I asked, “If you were prescribing me synthetic instead, would you dose so conservatively?” His answer, “I dunno…depends.” Asshole.

He wasn’t going to figure out anything. And at his rate, it would be Spring before I’d land on a stable dose of medicine. I left in tears, having wasted 2 months when I could have been getting better.

On My Own
I had a plan in place before that last appointment, now I would implement it.

Forget wasting valuable time shopping for a new doctor, begging for dose increases, or being made to feel as though I have an unnatural thermometer obsession. I did what so many others do: I ordered NDT from Thailand.

Here’s the skinny on my current status: It’s a few weeks now that I’ve been self-medicating* and it’s going well! I’m tracking my temps and heart rate daily and will get blood tests in 6-week intervals to stay on top of it, just as I would with a doctor. But I don’t need no stinkin’ doctor.

Then in February, after dosing has stabilized, I’ll bring all my test results to the new primary care doc I just chose (seems like a great guy, tons of positive reviews).  At that point, the next step will be clearer, thanks to symptoms abating (or not), and I’ll be happy to be referred to a specialist.

But that doesn’t necessarily mean I’ll hand over the self-treating reigns. As mentioned in the last post, my healthcare confidence is at an all-time low, so if things continue to improve as expected and I feel settled and satisfied, then I’ll stick to my DIY regimen, regardless of endos in the midst.

I’m no longer pining to be cared for by a white coat, just pining to get this health albatross off my back. And to that end, I will not waste another moment.

*On self-medication: I don’t advise anyone to follow my footsteps unless you know what you’re doing and have thoroughly educated yourself. I’m also not the one to ask how-to or where to get it, there are resources online that are easy enough to find. I’m just telling my story.

Where The Girl Has Been – Part 1

It’s been 7 years since my first race collapse, 3½ years since that crazy 9-day hospital stay, and a veritable eternity wondering what’s wrong with me.

By the time I left Philly, I had given up looking for answers. All the researching, doctors appointments, tests, the strange symptoms coupled with the fears that this was all in my head, and the loss of my running as I had known it…it wore me down in a big way. So I decided to stop pursuing it completely and just get on with life, which I did for a year.

Then July happened.

July 2015: General Checkup
I was happily avoiding all things medical since moving to Richmond, but I needed a mammogram referral (normal check-up), which necessitated seeing a doctor. I wondered before the appointment if I should tell this new primary care doc about my health mystery but when I started to tell her, it became clear how pointless it would be, so I sputtered out early with a “nevermind”.

Some good did come out of that appointment, however! She ordered some general bloodwork and it was revealed that I had a Vitamin D deficiency. That was unexpected and hopeful, in a way, because (always the runner) Vitamin D and VO2max are close companions, so I wondered if that was the reason my running was worsening as time wore on. And if I have one deficiency, maybe I have more – what if it all boiled down to something simple?

With that, my investigative energy returned. The first thing I did was order a couple more “runner-centric” blood tests on my own dime: B12 (low) and iron/ferritin (perfectly normal).

Then Things Got Weird
Back in health detective mode, I immediately started paying attention to anything odd my body was doing (beyond the usual weird stuff that I was now accustomed to). It’s kind of amazing how I managed not to notice these things up to this point, but I think it was a denial sort of deal.

First off, my feet.

Back in 2013, I wrote a post describing my first noticeable attack of Secondary Raynaud’s, complete with photo and hugely embarrassing lack of pedicure. While I had a few random episodes in the months following, I hadn’t thought about it since then.

Now that I was paying attention, however, I noticed that while sitting at my desk, throughout the day, my feet would feel strange (tingly and cold). I’d mindlessly move my toes around to make the feeling go away.  But since I was on the hunt again, one day in July, I finally took off my little sockies to see exactly what was going on. And it was this:


My hand is there for color comparison. This happens every single day, throughout the day, as long as I’m sitting in a chair.

I assume it’d been happening for quite a long time because my big toenails have horizontal ridges on them (called Beau’s lines) that are related to Raynauds, which is what this is, same as in 2013, but more and constant. Some days, the cold and color would travel halfway up my shin!

Next, my crazy fingers.

Again, I’ve no idea when it started, I just noticed it in July once I started paying attention. It’s all on the left hand (though very occasionally a teensy bit on the right).

You might remember I posted about the crazy itch attacks I’d get in a hot shower (which still happen, though not as ferociously). Turns out the finger tremor is also guaranteed to occur with a hot shower, though it also happens intermittently throughout the day and I’ve no idea what triggers it then.

Another, more interesting side note: While searching this blog to see when I’d first mentioned “itching” (because I was compiling an outline for the doctor I’ll be telling you about), I landed on an old post from 2009 a few months after my first race collapse. It mentions my left index finger twitching intermittently for 4 days straight, which I’d forgotten completely. Apparently, ’twas a harbinger of things to come!

What I Did Next
Because I’m done panicking when it comes to my health mystery, I didn’t freak about these symptoms. I was actually grateful for them, since photographic proof is so much more useful than “I used to run 8min/mi easy runs but now I run 11-12 minute miles”, though the latter being infinitely more gut-wrenching.

Even with photos and video, I still wasn’t anxious to go to a doctor about it, my confidence in the medical world having been trampled and kicked to the curb. But the foot problem seemed worth tending to since, if this was happening in the midst of July, what would happen with them in winter?!

So in DIY fashion, I initially attempted to fix it with supplements, hoping the magnesium I’d been taking to accompany my Vitamin D would build up and help, then adding ginkgo, both known for circulatory effects. But weeks later, neither made a dent.

Next, I went back to Dr. Google, researching Secondary Raynaud’s in earnest – which led me to one cause of it that I’d previously glossed over: thyroid issues. My TSH tests had always been in normal lab range – albeit on the high side.

What I didn’t know until I started reading about thyroid, is that lab ranges for TSH can be virtually useless. That if symptomatic, you need a few other tests (most importantly free T3 and free T4) to determine whether your thyroid is actually working correctly. But the catch is that if your TSH is within lab range, most doctors won’t consider investigating further despite the wealth of symptoms you might have.

I don’t want to spend many words on it, but in a tiny nutshell: your thyroid controls your metabolism, how much oxygen gets sent to your cells and how much energy you get to have, among other things.

I went back over my TSH results through the years (I had 6, starting from 2009), and noted that each one increased over the previous. None of them were in “optimal” range, and my last one was at the very top of range.

Birthday Present To Myself
On September 6th, I turned 54. The Friday before my birthday, I bought myself a full thyroid panel. That means blood tests for TSH, Free T3, Free T4, TPOAb, TgAb along with 5 other thyroid tests. The whole thing cost me $208 – infinitely cheaper than a week-long hospital stay, or an unnecessary liver procedure, or a few lost years wondering what in hell is wrong with me.

Bitter much? Yeah, I get to be pissed off. I wasted a lot of time and tears.

Because a few days later, my results came back. My TSH was 5.39 (officially High), my Free T3 and Free T4 were both on the low end (gee, no wonder I can’t run), and most telling: high TPO antibodies.

High TPO antibodies are the marker of Hashimoto’s Thyroiditis: an autoimmune thyroid disease. Coupled with my high TSH, FT3 and FT4 results, there was no interpretation about it. It was.

That’s it for this installment, stay tuned for an even weirder symptom in Part II. Because the fun just gets funner. sigh

Neurologist Appointment

I feel sorry for my marathoning friends whose races were cancelled this weekend due to the storm, though I’m grateful as hell to Mother Nature for dumping her first snowfall on Philly yesterday.  Because of that, I was able to grab a cancellation spot today at my neurologist’s office.

I don’t have much to report yet, other than I really like him.  He spent nearly 2 hours with me and was super easy to talk with.  Interestingly, he thought my running video looked like Parkinson’s, though he said clearly I don’t have that.  Also interesting was that I was so focused on the running gait and the random constant itching episodes that I almost neglected to tell him the more “normal” MS-type symptoms (the feeling of water dripping down my leg, the phantom hair on my finger and some consecutive mornings waking up with pins and needles on my left arm). Once I told him that, he went from questioning the idea of MS, “though likely a spinal cord problem” to it suddenly becoming more likely.

I’m to get MRIs of spine and brain and possibly a spinal tap.  I’d love to get all this done now, but he suggested I wait till my new insurance starts in January since the tests will be way cheaper (thank you, Obamacare!). So, tests at the beginning of next month, then I’ll see him again on January 27th.

Aside from that, I have knee reflexes again which is heartening since they’d been completely absent before, though the blood pressure is still weirdly high so I guess I need to talk to my GP about that.  But the main thing is that I feel a zillion percent better for having talked to someone – my mind has been such a dark, scary hole these last few weeks.

And that’s it for now.  Have a happy holiday season, folks.  I wish you all peace in every shape, form and thought and I’ll see you in 2014!

A Matter Of Confirmation

I cancelled the infectious disease appointment.  Turns out that for some time now, unbeknownst to me, I’ve been providing a daily positive diagnosis for Multiple Sclerosis right here in the comfort of my home.

You know those itchy rashes I mentioned?  I call them rashes though technically they’re not, no bumps or anything, just an itch that travels around certain parts of my body numerous times a day and appears without warning, lasting seconds or minutes before disappearing fast as it came.  Until now, I’ve had no idea what they’re about, but on Thursday I learned it has a name “paroxysmal itching” and is a known MS paresthesia symptom (like the more common pins & needles or numbness).

But here’s the twist…

I’m able to trigger an itch-fest myself by doing one thing: getting in the shower. I don’t have to soap up or anything,  just stand in hot water and boom, my hips will itch like crazy.  I even Googled it a few weeks ago to find out how the hell shower water can give me an allergic reaction but found nothing useful, so I chalked it up to “one of those strange things you live with when you get older”.

What a surprise then to find the explanation, without even looking for it, on the National MS Society site.

Uhthoff’s Phenomenon
Before MRIs, they used to diagnose MS with the “hot bath” test.  They’d immerse the patient in hot water and if neurological symptoms appeared, it meant you had MS.  This, thanks to Uhthoff’s Phenomenon which arises from heat intolerance, one of the most common symptoms of the disease.  It’s still a relevant diagnostic sign, not that anyone’s tossed into hot water these days, but I read of one doc who keeps a space heater in his office to observe/evaluate heat response, and patient reports of it can seal a diagnosis.

Unthoff and I have been shower buddies on and off for a while now – lately he’s with me for every damn shower, the perv. And as expected, upon lowering the water temp, the itch resolves.  So, yeah.

It would also explain something that has bugged the crap out of me for a long time.  Recall that in my short running life I’ve had 3 race collapses: one in 2008 and two in 2010.  The first two landed me in the ER for heat/dehydration, the 3rd didn’t require medical help but felt similar to the other two. The worst incident resulted in an overnight hospital stay. Let’s review that one: It was a 5k for which I took careful precautions by properly hydrating beforehand, wiped myself down with ice cubes before the start plus put some in my sports bra, and midway through the race poured a cup of water over my head.  Yet I managed to spend a night in the cardiac ward.

This never made sense to me. None of it did really, one collapse because you don’t drink enough, ok…but 3?!  What was I doing that was so different from other people?  A normal body slows down, it doesn’t shut down.  I can’t help but think that Uhthoff and his heat/exercise gremlins had a hand in it. Really looking forward to discussing it with the neurologist.

One last thing about this. When it first happened, it came to a head the first warm week of 2012 (a fact I always thought pertinent).  Anyway, my legs would go wonky, I’d freak out and go home and then, after sitting around for a short while, would test my legs by running through my apartment and note that my legs had returned to normal.  After the hospital stay, when I returned to my routine and the  “rigor-mortis” leg would intermittently appear in a run, a brief stop on the side of the path would “reset” my leg and I could resume as if it never happened.  This stopping has been my reset tool ever since.

Uhthoff’s Sign: neurological symptoms appear as body temperatures rise and recede as body temperature normalizes.  That’s been the case from the start.

No Mysteries Left!
my altered running gait
bouts of extraordinary running fatigue
the itches
the shower mystery
all my other odd neuro symptoms
the race collapses

Then there’s the progression. Just a year ago, it was still so ephemeral I could reason it away – a December 2012 running log entry says “felt a little oddness but maybe it’s just a quad niggle”.  In May I gave up the Garmin so I could take mid-run walks and stops without having to see them, or my deteriorating paces, in my running log.  By August, the fleeting “oddness” had become regular spasticity, affecting my ability to run comfortably on pavement and by the end of October, even grass didn’t work.

Add the fact that Late Onset MS is usually diagnosed around age 50 (I’m 52) and most commonly presents with motor disturbances…looks like we have the grand-prize entry in the “Flo’s Theories Of What’s Going On” game. I’m going to try to get an earlier neurologist appt. so hopefully will have an answer before Jan. 3rd.  In the meantime, the plan is to remain as neutral as possible and not dwell on it – no sense freaking out till I get a proper diagnosis.

Later, kids.


The Last Entry In The Game

I wasn’t going to write again till I talked to a specialist but I found something I want to put out there as the final contribution to “Flo’s Theories Of What’s Going On”. I figure I’ll offer up this last piece of potential enlightenment so we can have fun comparing notes after the doc visits, the first of which is next week.

Before I do though, because this is a diary of sorts (and an invaluable one since I’d have forgotten everything otherwise) I must report that this month has been a real challenge.  I’ve had constant bothersome symptoms like itchy rashes that pop up and disappear daily, twitching facial bits and more memory weirdness, though I also had an entertaining nerve oddity a few days ago.  For about 20 minutes, it felt like I had a hair on my ring finger that I could not remove!  What made it particularly goofy was that, along with rubbing the finger to make the feeling go away, I also kept blowing on it as you would an actual hair, though I could see from the start that there was nothing there to blow. I thought that was funny; human nature and its habits.  The imaginary hair, btw, pairs nicely with an oddity I had about a year ago when I felt water dripping off my knee, though I was walking outside wearing jeans and hadn’t pissed myself. Crazy shite.

But the worst thing going on with me this month has been depression.  I’ve cried 26 of the last 28 days.  I’m not a depressed person by nature and have never had such an extended streak of Suck so I don’t think it’s entirely about being scared and feeling sorry for myself (though yes, of course I am doing that, too).  I think the constancy and depth of these feelings is actually borne of the thing itself – that it’s just another stupid neuro symptom.  So I’m remaining tearfully objective about it. But it does suck.

That said, today I feel much better because I found something last night, a potential name to attach to my movement oddity:  Extensor Spasticity (aka Upper Motor Neuron Syndrome). When I think of spasticity, I always imagine someone gnarled up in a wheelchair, but that would be its most severe form.  Spasticity is when you lose the correct mix of tension and relaxation to your muscles so they tense up tight, and here’s the kicker: it’s velocity dependent! “Spasticity is highly influenced by the speed with which one tries to move.  This means that the faster the message is to contract against the tight muscles, the stronger the signal is to keep them rigid”.  That would explain why it only happens when I run and also why, if I’m walking and attempt to dodge across a busy street (I don’t dare anymore) the feeling starts instantly as if I was stuck in quicksand, yet when I go for a run it doesn’t begin until I’ve gone a block or so.

Another interesting thing from the National MS Society’s page about gait is a passage that matches my suspicion concerning my left foot toe-landing: “Weakness can cause problems such as toe drag, foot drop, “vaulting” (a compensatory technique that involves raising the heel on the stronger leg to make it easier to swing the weaker leg through), compensatory hip hike, trunk lean, or circumduction (swinging leg out to the side).” Also amusing that in the last post I mention my spastic arm movement when it just might literally be that.

Anyway, the fact that my movement pattern might be a common thing in the neurological world and that running could actually be a sensible trigger instead of a frustratingly mysterious anomaly makes me a lot more optimistic about my upcoming doc appointments.  I’m now more confident that the video depicts more than an uptight chick with a choppy gait and a frowny face and is likely to be something a neurologist will recognize. Thanks again to Thom for taking it and to my friend Dr. Dan for suggesting video in the first place, it’s going to make a world of difference (and already has in my ability to describe and understand it better).

Speaking of doctors, I start next week: Infectious disease doc on Wednesday and then on January 3rd, a neurologist I’m pinning all my hopes on – his specialties are movement disorders and neuroimmunology. I actually tried to see him last year after November’s ER visit because he seemed like the perfect specialist for me, but his office required a written interview to get an appointment and…I failed. Which, incidentally, took the wind out of my sails for pursuing further medical help.  But I hold no grudge since “my legs do these weird, stiff baby steps but it only happens when I run”  probably wasn’t that convincing a problem.  A year later, with more symptoms and a ton more clarity to explain what actually occurs, they let me skip the interview process entirely.

Lyme, MS or Whatever
Back in March 2012 when it started, my neurologist told me that since my MRIs were clear, it definitely wasn’t MS, that visible lesions always precede symptoms.  But according to the National MS Society, “approximately 5% of patients with clinically definite MS do not show lesions on MRI at the time of diagnosis. Also, since many lesions seen on MRI may be in so-called “silent” areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient’s clinical signs and symptoms.”  And a few forum searches came up with many people who had clear MRIs at the start.

Not to say I’m now placing bets on MS, but I’m going to release my clutches a bit on the lyme idea because spasticity (if that’s what it is) is seen in 80% of MS patients but only a fraction of lymies experience it.  So, if the infectious disease doc says “nope, not lyme” I’ll believe it and trust that the neurologist will get to the bottom of it.  Whatever it is, I believe that the answer is ready to be found.

Video: What I Look Like Running

This weekend is the Philly marathon which I’ll be actively avoiding (sorry racing friends, I can’t handle spectating right now) but as a wonderful byproduct, my friend Thom, whom I’ve known online for years but never met, came for a short stay before joining his buddies for a long weekend of race festivities.  It was one of those “it’s like we’ve known each other forever” deals where you can jabber all day about the deep stuff.  He really couldn’t have come at a better time.

Aside from the sympathetic ear he leant, he helped me out in a huge way today:  I asked him to videotape me running and that is what he did.

I’ve known we were going to do this for 2 weeks and have dreaded it the whole time – dreaded seeing what I look like but also dreaded doing the running in the first place.  I tried to keep running the last couple weeks so there’d be no break in the routine before taping but my body and mind have given up for now.  I simply can’t handle the raw, crappy feeling anymore.  I tried twice and stopped after a few steps, turning them into walks. I’m done.

For frame of reference, here’s how I used to look:


Here’s how I look now (don’t worry, just looks like a shitty runner):

You’d have to slow it down to analyze what my feet and legs are doing but what’s interesting is that for many months, I’ve thought the weird gait was all about my right leg but the video shows me avoiding my left heel for the most part, toe-landing on the left foot only, of all things.  I’m thinking because the right foot scrapes a bit (footdrop, I guess…feels like the toe “sticks” sometimes) that maybe staying up on the left toe makes clearance for the right leg to follow through, like a compensatory leg-lengthening? Just a guess.

Aside from that, my left arm does a spastic sort of pump staying right in front to match the right leg that doesn’t go back much.  And there’s a complete dearth of leg swing and knee lift (the right knee especially appears to barely bend). The intense “smallness” of how my gait feels translates perfectly to how I actually look on the outside.  Again, all this is more apparent when slowed down so you’re probably going “huh? just looks choppy to me”.

The stride morphs a lot as the run progresses, btw.  We almost did 1/4 mile for the video but there’s no telling what I look like 2 miles into it, I know it feels different as it goes.

Doctor Visit
I went to the doc yesterday morning before Thom arrived.  The appointment started with an oddity: I always have very low blood pressure no matter the scene (doctor’s office, emergency room, hospital stay).  The last time I was measured at 92/60, at this appointment it was 155/100!  Granted, it’s been a particularly bad couple of weeks both physically and emotionally but those numbers are cray-cray.

The appointment was surprisingly ok, the doctor’s taking it very seriously and is upset with me for not coming in sooner.  The downside is she’s not that informed about lyme so the negative test means more waiting for me (it should be noted that she thought I had received both standard tests, though I knew I hadn’t since it’s such a predictable story with lyme. It wasn’t till I inquired about specific results that she realized they’d only done the Elisa test). So more blood was taken for a Western Blot which I’m sure will come out negative as well considering how long it’s been, but also some tests for other stuff, like thyroid function.

She won’t give me antibiotics yet, wants me to see an Infectious Disease doc first, but I can’t get in to see one till after Christmas.  She said they’d try to find someone who could see me in the next couple weeks.

As an interesting note, in looking through this blog, I was reminded that I went back to the emergency room last year in November. Lyme bacteria are known to love cool weather.  It keeps making more sense since things took a bad turn as October temps dropped.  Whatever.  November sucks.