Just a quickie, nothing to do with body conditions or sports, but all to do with my latest design endeavors, of which I am completely enamored: customized invitations & stationery.

I’ve been curious about the realm of invites for a while but always considered it intimidating, especially because I don’t go to normal people’s gatherings much (hell, I went to my very first baby shower about 3 months ago). I mean, invitations have tons of words on them and they announce peoples’ very special event so they’re really important and it’s all so scary and mysterious and…  Well, screw that. I finally bit the bullet and got my toes wet. Once I made a couple, I realized that this is the perfect outlet for my skills. They’re a blast to make!

So I opened a new Zazzle shop, Flo’s Paperie for ready-made invites but last week I realized that I could do better by selling them digitally via my Nifty Printables shop. The major upside of that, aside from it being completely autonomous (no small thing), is that creatively, I get to keep my design vision from start to finish.  Because when  you make customized invites at Zazzle, you have to dumb them down to accommodate their weak selection of fonts and limited creation parameters.  Not saying my Zazzle invites aren’t cute, but the ones at Nifty Printables are exactly as I intend them to look. Of course, the tradeoff is that now I will have to deal with actual people (OMG, OH NO) but I’ll learn to adapt. Really. I will.

Enough jabbering, here are a few samples of my work:

Printable Baby Shower Invitations - It's A Boy Blue Checkerboard - Digital DIY invite

Surprise Birthday Party Invitations

Zebra Graduation Announcements

Outer Space Birthday Party Invitations

Printable Baby Shower Invitations - Stork in Gray, Orange and Green for Girl or Boy - Digital Invite

Printable Photo Graduation Announcements - 2014 Modern Graduate - Customize Colors

Gold Deco Adult Birthday Party Invitation - ANY AGE - MIlestone Birthday or Any Bday - Printable Digital Invite

I also have Thank You Cards and Note Cards so check out Nifty Printables or Flo’s Paperie on Zazzle when you get a chance. Oh, and one last link (sorry for the voluminous promotion today but I figure I might as well get some Google spidering action out of this site while it’s sitting here) is for my House Of Flo site. I’m going to be posting my paper goods there on a regular basis, so if you’re ever bored, check it out.

To my Boston Marathon friends, have a great race, it’s almost here!

Ciao, folks.

 

 

I’ve been in a holding pattern the past few weeks, eagerly awaiting an appointment with an MS specialist. I’d scheduled two different doctors at 2 different hospital systems, playing the cancellation game for whoever would give me the soonest appointment.  So how wonderful to receive a call yesterday at 3PM from the doctor whose first available appointment was in July (I scheduled it in January!), asking if I could come in this morning. “YES!!!” And off I went…

The appointment was with a pair of doctors who were such a remarkable contrast to the previous doc that any guilt I had for thinking that guy was inept went out the window…that guy was seriously inept.  I walked out of today’s appointment with orders for a spinal tap, a cervical spine MRI, something called Evoked Potentials (it’s a collection of tests for nerve response that takes 3.5 hours) along with a boatload of blood tests.

These are all happening on April 24th though my follow-up appointment won’t be until May 29th. But despite this thing dragging on interminably, it’s an intense relief to feel I’m finally being properly investigated. Even if nothing definitive turns up (which could happen, the doctor said sometimes people just have stuff they can’t figure out) I’ll at least have a certain peace knowing all the bases were covered.

Interesting side note: today, March 28th, is exactly two years from the day I was initially admitted to the hospital for this thing. What symmetry is this?

In other news, I’m moving to Richmond, VA in the fall.  I had an epiphany while walking on my old river running route, which has become a bittersweet place for me now (more sad than sweet), that I don’t feel much of anything for Philadelphia. The only thing I really loved about it, aside from my friend Lara, was the river path and now that’s tainted, an ever present reminder of what I can’t do anymore, so it’s time to go.

Also, since I’m unsure as to how I’m going to progress physically, I’ve decided to set myself up to make all my income via the design biz. This way I can live anywhere as long as I have my desk and computer.  Add to that a cheaper city than Philly and I’m set.

Thus, I’ve been in turbo-design mode for weeks now, building up the business while having a great time doing it.  Because it’s fun! I get so excited by new ideas and what I’m finding is the more I work, the more ideas come to me. So this, along with the impending move, is a super bright spot in my life right now.

Back to the move, in February I posed a “where should I go?” question on Facebook with a specific set of parameters and got a wealth of great replies. Ultimately I decided on Richmond for a few reasons, it fulfills the “don’t need a car” parameter more than any of the other suggestions, rents are way better than Philly, the weather’ll be an improvement, and it’s a major river town (this is a huge bonus to me).  Not a deciding factor but a nice surprise, it appears Richmond has some voiceover work going on, though I’m not sure how much or how tight the scene is, it’s nice to know there are opportunities if I want to pursue it.

So that’s the story for now.  Moving forward inch by inch.

I felt so defeated when I wrote Tuesday’s post that I honestly did not expect to write again for weeks but I’ve now got a lot to say.

First off, I’d like to talk about the neurologist I saw. While he was very generous with his time, I don’t trust anything he told me concerning MS. Granted, he’s not an MS specialist, he’s a Parkinson’s/movement disorder guy so he shouldn’t be expected to know everything about everything, but he said some things I knew to be patently false, that contradicted common knowledge found on the National MS Society site (or any MS website) and refuted so many of the real patient stories I’d read. No sir, my crazy itching is not coming from sensitive skin, the heat connection is very real and certainly not “rare” by any stretch of the imagination (this was so blatantly bogus it was kinda shocking), the fact that I’m able to take 4 mile walks should not in any way diminish what I’m dealing with (“You walk 4 miles? That’s a lot! Most people don’t do that”), and “Can’t you change your route?” is not an acceptable answer to my telling you I can no longer even run across a busy street.

Then there are the MRIs.  The doctor didn’t go over the reports with me, I had to ask for copies as I was leaving the office.  While the brain MRI says there are no lesions to suggest MS, there are hyperintensities and my cortical sulci are “slightly more prominent for stated age of 52″.  Hyperintensities can appear with age but in 2012 I had none, nor was my cortical sulci noted, so something has changed from then to now and I would have wanted to at least talk about it.  I considered calling the doctor to discuss it but realized he’d just leave me infuriated. Dr. Google tells me the cortical sulci prominence means my brain is slightly more atrophied than should be for my age – the sulci is where our memories are so that sucks, but I’ll patiently wait for the next neuro to get a real explanation.  Because there is definitely going to be another neuro.

Huge thanks goes to my dear friend Simon who insisted that this doctor telling me “there’s nothing more I can do” when he hasn’t done anything aside from ordering 2 MRIs, is not supplying a satisfactory outcome and that I need a second opinion.  I almost resisted Simon’s advice, preferring to believe “doctor knows best” but the situation rankled and the more I thought about it the more I was sure Simon was right.

So my next neuro appt is with a bona-fide MS specialist, because if I’m going to be told yay or nay it will be from someone who knows their shit. My appointment’s not till mid-April but hopefully I’ll get an earlier cancellation.

I Saw A Hepatologist Today
Speaking of cancellations, I got in to see a hepatologist (liver guy) today to check out the MRI blob and by wonderful coincidence, it was the same doctor from the hospital 2 years ago who fought valiantly (though for naught) against the neurologists’ diagnosis of blood stealing.  Having him on the case is fantastic not only because I trust the guy but because every time I have to tell my story it’s like having to recite War & Peace, so convoluted, complicated and long as it’s become.  To my joy, he remembered the situation very well, saving me a lot of explanation, though he was certainly interested in where it’s taken me.

My liver is surely A-ok, it felt normal to him as he was thumping me and since I’ve not had any liver-related symptoms, the CT scan he ordered and the liver blood tests are just to be on the safe side.

And Then There Was Saturday: New Symptom Complete With Evidence
My life has become rather twisted.  Instead of dreading new symptoms, I now embrace them in the hopes that they might bring me one step closer to a diagnosis.  The best kind of symptom supplies photographic evidence and on Saturday afternoon I hit the jackpot.

As mentioned, for the last 3 months my exercise has been limited to long walks in the park – I haven’t cracked a real sweat since my last run in October. But on Saturday, after being stuck in the house for a couple days due to negative windchills and ice I thought it’d be fun to do a little exercise DVD from my pre-running days, something super easy and totally low-impact just to work up a sweat again.

So I pulled out “Walk Your Way Slim”.  I’m admitting this most embarrassing detail, not to impress upon you how low the mighty have fallen but to let you know how little it took for the following events to occur.

I start the workout and a couple minutes into the warmup, it comes to my attention that the toes on both my feet are completely numb. I look down (I’m doing this barefoot on a yoga mat) and note that my toes are so ghostly white, they’re almost green.  I stop a moment to feel them expecting them to be frigid but they’re warm so I figure this is just a passing oddity and will right itself once I’m warmed up.  But it doesn’t.

For the entire 45 minutes, they stay numb, white and damned uncomfortable but I’m entranced enough by the oddity of the situation that I press on to the finish, though stopping a couple times to take photos.  By the end of the workout, my toes are still white and numb but now they’re also cold to the touch. From warm to cold while exercising…must have been Opposite Day.

Afterwards, I sit down and watch my toes turn purple before settling back to normal.  A quick Google search (and confirmation today by my hepatologist) leads me to Secondary Raynaud’s Phenomenon – “secondary” because it’s stemming from whatever has been ailing me and of the listed possible causes I’m picking this one “Diseases and conditions that directly damage the arteries or damage the nerves that control the arteries in the hands and feet”.

I sincerely apologize for showing these disgusting gnarly old-polish-growing-out troll feet but I had no idea this was going to happen or I’d have made them cute beforehand. I’ve since given myself a pedicure with plans to do the workout again so I’d have cuter photos but screw it, I’m not going through that shit again. Anyway, note how the whiteness even spreads into the ball of the foot.

But wait, there’s more.

During the workout I started itching. That in itself is no surprise since raised body heat is a guaranteed trigger for it, but upon finishing the video and for the next 6 hours solid, I experience the worst non-stop “Fuck, when is this going to end?!” misery itching. Around 7:30pm it settles down in magnitude and number of locations but remains at a high level until I go to sleep around 2am. Even the next day, I was still itchier than usual.

The moral of this story is that “Walk Your Way Slim” packs one venomous punch. But really, that I’m messed up. It was like I OD’d on sweat and had a hangover the day after.  And while I totally see the humor of this, it’s a real pain in the ass that exerting myself in this most minor way results in such a dramatically uncomfortable outcome.  Putting aside what this might mean as time goes on, for the moment I’m very happy that it happened.  More grist for the mill, as they say.

I saw my neurologist today to discuss the MRIs; there are no lesions indicative of MS which is a huge relief.  The MRI report mentions a suspicious thing on my liver and recommends a CT scan so I’m seeing a hepatologist in 3 weeks but I’m not too concerned, it’s probably the hemangiomas I’m already aware of.

The neurologist said my liver would not be the cause of the neurological symptoms but he also said there’s nothing he can do at this point to help me.  He said he could order a spinal tap but even if it showed something unusual, there’d be nothing to connect it to so it’d be useless. He brought up the possibility of getting a 2nd opinion but said it’d be a horizontal move really, which I get since there’s nothing that points to anything here so I’m to see him again in 4 months, but just for the hell of it I guess.

So while I had a moment of jubilation that this wasn’t MS, the fact is, I’m stuck with something that continues to get worse.  Towards the end of November, the weird legs that used to happen only when running started occurring on my exercise walks – a brisk pace could bring it out.  But now it’s more constant and sometimes even my regular “to the store” walks feel off.  Guess I’ll need to be falling down or needing a cane before this gets figured out.

And that is it for probably a while.  I’m tired of being a downer and posting this frowny shit over and over.  I’m also not going to link posts to FB anymore, my Wall looks like a blog morgue these days, so if you want to be alerted to the next post, best subscribe.  Speaking of Facebook, today I removed myself from the last 2 running groups of which I was a member. I can’t run and don’t know when or if I’ll be able to again.  Imagine that.

Until the next time…

xxxflo

Late night edit: I’m going to get a second opinion.

 

Sunday edit: New developments, chunky post coming up this next week…

 

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!

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.

 

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