On Monday, I drove to Richmond, Virginia to find an apartment.
About a week before, anxious about what I’d find and how to find it, it occurred to me that for the same rent I currently pay in Philly, I could afford a luxury high-rise in Richmond. So prior to leaving, I arranged an appointment at a building with great floorplans and amenities, plus lots of positive tenant reviews. That was my first stop in Richmond, and I was so sure I’d love it that I imagined I’d be driving back the next day, lease in hand. Alas, the apartments were just ok and the area wasn’t that great so I got back in the car, once again full of anxiety about what the next few days would bring.
Next stop was the AirBnB I reserved, which ended up being in a fantastic location (the area I would ultimately want to live: Carytown/The Fan) and my host, Fiona, turned out to be a gem, full of great advice. The funny story with that though, was when I drove up to her house the first time, there was an elderly black man on the porch who couldn’t speak (literally unable to form words) but who seemed bright, just extremely odd. Fiona was picking up her kid so the door was locked though she said she’d leave it open for me. So I’m standing there saying pleasantries to this man who’s grunting back, wondering if I’ve gotten the address mangled or what. Turns out he’s some neighborhood guy that just sits on her porch every day. I don’t know if he sits on other folks’ porches, too, but he certainly does like Fiona’s.
That night, I had a wonderful dinner and enjoyed a neighborhood walk with my new friend, Emily, who lives in this same area. That was so great because she’s also a runner and had so much valuable info to share but also, I just really like her! I’ve reserved a place on her porch for wine guzzling after I’m permanently installed.
The next few days of apartment hunting were a serious emotional roller-coaster, made worse by the fact that I’m self-employed so my 1040 looks atrocious (such is life when you deduct large portions of your rent and utilites for a home office). Because I knew that’d be a problem, I brought 3 months of bank statements, figuring that those, along with a fabulous rental history and excellent credit score, would suffice. But some companies require 1040s, no exceptions.
On top of that, there’s not a lot of inventory here for nice 1 bedrooms, probably helped by students already grabbing those up. If I was wanting a cheap apartment around $700, there are a good number of those (albeit small and dingy), but thanks to my business blossoming so beautifully, I could get something much nicer and larger…if only there were more to choose from though! One girl I met at an apartment showing said she’d seen 23 apartments in the last month, which didn’t cheer me up any. Several times I resigned myself to the fact I might have to suffer another Philly winter – a miserable prospect because I’m so over that place.
But hey, today I got an apartment. A GREAT apartment. On a gorgeous quiet block, 3rd/top floor so no footsteps above me, washer/dryer in the unit, an extra room perfect for my office, renovated kitchen and bathroom and the thing I wanted most…a balcony to watch the world go by. It even has a free reserved parking space so if I do get a car, that’s another bonus. And it’s cheaper than my tiny Philly apartment!
So that’s it, I’m moving to Richmond mid-August! I’m already counting down the days, so excited to begin my new life.
As for my perception of Richmond, I just love it. People are so friendly and laid back, they say Hi and smile as they pass and I love hearing the accents, it’s a subtle yet distinct lilt. The way I see it (or feel it) is that Philadelphia is a city of hard edges, whereas Richmond is a feather on your cheek. So soft, so sweet. I cannot wait to call it home.
A few months ago, I really thought I was doomed. My mystery situation had reached a nadir: I couldn’t run, new symptoms had cropped up and I was convinced it was the entrance into something very bad. MS to be exact.
During that time, I changed. A lot. I wish I had the nerve to write everything I thought of and planned for during that period because it would make great reading, but I don’t have the guts. My closest friends got some major earfuls (and a barrage of tearfuls) for which I feel bad to have subjected them but am incredibly grateful for having such loving friends who allowed me to drown them with such depressing shit.
Eventually, after a couple months of wallowing, I chilled out and got used to the whole idea, focusing on work and taking a true “que sera, sera” approach. I stopped imagining a scary future and instead, devised a plan to move to Richmond and change this life that I’ve been thoughtlessly coasting through for far too long.
After months of the bad crap that seemed to build and build, I recently started feeling noticeably better. The ferocious itching bouts lessened to nearly nil and the numb white toes thing (Secondary Raynaud’s) that had begun to accompany me during park walks stopped happening. In my previous theorizing, I had assumed – since hot showers, exertion and getting under the bed covers would trigger the itching – that heat was causing it. Due to that, I really dreaded the coming summer. So I was happily surprised to find that as the weather improved, so did these issues.
Today, when I went to my doctor to discuss the test results (which are all clear, yay!) I bounced the following idea off her and she said it could be. That it’s not heat per se, but the change in temp from cold to hot, because I was seriously freezing in my apartment all winter, swathed in layers but never actually warm, so any heating up would have been a marked difference from my norm. Not that it makes a huge difference now, but maybe somewhere down the line, this delineation will matter.
Anyway, my doctor had me go over everything again and was very interested in the Raynaud’s photos which, at the last appointment, I’d only shown to the resident. She says it can arise from an auto-immune disease or a vascular problem but since MS is currently off the list, my tests don’t indicate the need for a Rheumatologist (which would be the next investigatory move), and since the itching and Raynaud’s has chilled out for the time being, I’m to “wait and see” until I see her again in August. In the meantime, she encourages me to get back to running.
For once, I am totally 100% cool with waiting and seeing. Because even though I don’t know what’s up with me or what’s next for it, if anything, at least I know I am not a ticking time bomb and that things can get better! That’s sort of huge.
As mentioned in the previous post, last week I got inspired by a carpet of grass and ran a few yards. I was elated. Cautiously so, but really happy that I could do that at all. Then I got totally scared by the thought of getting back to it.
Big props to my pal Lara, who I’ve mentioned here a few times. We met soon after I started running in 2007 and she figuratively held my hand at my first race, the Clean Air 5K. We used to run together sometimes until I got my sea legs and she went her cycling freak way. But in a kooky “Life’s Full Circle” thing, she recently had a baby and has been out of the fitness loop and said she’d be up for some run/walking. So last Thursday, she once again figuratively held my hand while I did my first official run/walk return. Bless that girl, it helped tremendously to have her there.
Since then, I’ve been out for a run/walk by myself once and did an exercise DVD on another day (yes, the same Walk Your Way Slim stupidity as on the “white numb toes” day, but this time with no ill effects save for mind-numbing “kill me now” boredom.)
I feel like I should admit though, that there’s a likelihood I’ll never be the same gung-ho runner I once was. Of course, it’s too early to predict and I might find that as I get in the groove, the passion returns, but right now I’m still scared of it. I’m not waking up thinking “Oh goodie, I can’t wait to get out there!” But that’s A-OK. It’s a new phase and the runner in me will reveal itself in time, or not.
No matter what happens, this whole mess ended up being a gift. My life has changed for the better, all because I had to think of a Plan B for Life: What I was going to do IF. But even without the IF, the Plan B remains sensible, fun and exciting. In Plan B, I’ve got a whole new business model that is already making great moolah (shocking, actually) and I get to grow that business in Richmond! To that end, I’ve got an Airbnb reserved for the last week in June for apartment hunting – I can’t wait to meet up with my new Richmond friends, Emily and Ingrid!
But the icing on Plan B’s cake was something I never expected…I get to run, too! It’s not the end-all be-all of my life, it’s a too, but it’s a glorious, joyful, back in flight, I can run! Too.
The Girl, she’s back in motion.
I’ve got a little update today.
Medical-wise, I still don’t have all the results yet. The blood tests and cervical MRI results were posted online and everything looks fine with that. The MRI reports some degeneration but nothing I didn’t know about already. Most importantly, no lesions.
What’s left is the results of the spinal tap and the evoked potentials, and since I didn’t receive a phone call, I assume nothing weird showed up in either. When I left the doctor’s office at that initial appointment, she told me she likes to talk about results face to face, so I’ve got a May 29th appointment, but I went ahead and left a message on her machine today to see if she’ll tell me over the phone.
But the thing I want to report, as the title of this post gives away, is that I ran today! I mean, I didn’t run run but I did jog back and forth a few times on a grassy area.
I had closed off the possibility of even doing that months ago. I’d do little tests by trying to jog across the street but always felt the weird gait before I reached the other side. Then, with the numb feet thing (which sometimes happens on walks now) I’ve been all “Why bother trying? I’m falling apart”. But today I went for a walk and was wearing some old running shorts and a tank and saw a stretch of soft green grass and just had to try, it was inescapable. And it wasn’t terrible! It was kind of amazing, actually.
Of course, the second I finished today’s little joggette, I was immediately dreaming of doing Couch-to-5K again but I’m going to try my best not to get too gung-ho just yet. I don’t ever want to feel the way it felt before, so if that means there’s a threshold I need to stay under by sticking to a few yards here and there, that’ll be just fine. I’m just so happy I was able to do it at all.
No matter what the future holds – and the future is really a useless place to devote all your mental time, take it from me – I’m feeling a lot more hopeful than I have in months. Maybe I don’t have to bag up that pile of running shoes by the door. And maybe I shouldn’t empty my running clothes drawer, after all. Maybe I’ll use them all again. For real.
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 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:
Tons more where these came from, plus wall art, pre-made logos, assorted party printables and more, so check out Nifty Printables 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 there on a semi-regular basis, so if you’re ever bored, check it out.
To my Boston Marathon friends, have a great race, it’s almost here!
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”.
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.