If we think we have physical imperfections, obsessing about them is only destructive. Low self-esteem involves imagining the worst that other people can think about you. That means they’re living upstairs in the rent-free room.

-Roger Ebert

Hey ho.

I’ve had a slightly upsetting morning.

I had my appointment with the specialist today – a dermatologist that my PCP (primary care physician) sent me to.

In a nutshell (because I don’t have the emotional fortitude to go into great detail about it at this time), I have no new information, no answers, no new options.  They seemed to be rather focused on the appearance of the thing – because, well, shit, they’re a “dermatology & cosmetic surgery” center that focuses on making people feel beautiful, and my birthmark is huge and not beautiful.  Of course they’re focused on the appearance.  I tried telling my PCP that going to a derm was a mistake, that I need to see a vein specialist, but he said, no, this is the way to go.  And so, after going to the derm, and once again going through the litany of complaints and concerns, they still had nothing for me.  Worse, they seemed dismissive of me when I told them I wasn’t concerned with the appearance of the birthmark, that I was more concerned with medical issues.  Like, if I’m not going to shell out money for laser treatments or sclerotherapy, they want nothing to do with me.

Of course, I am disappointed… but it’s just a dead end in a maze with many, many paths.  I have other resources; I will find someone who can help, who has answers, who cares enough to spend the time with me to get to the bottom of it instead of a cursory ten minutes in and out of an office.

Pied Beauty – by Gerard Manley Hopkins

Glory be to God for dappled things – -
For skies of couple-color as a brinded cow;
For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut falls; finches’ wings;
Landscape plotted and pieced – - fold, fallow and plow;
And all trades, their gear and tackle and trim.

All things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:
Praise Him.

Increased blood clot risk?

Well, this is no good.  I stumbled on it while doing research for a completely unrelated case.  I saw this big listing of mass torts on NJ’s website and, boom, there it was. 

I’m on NuvaRing.  It’s been great. 

Except now I have to wonder if I am putting myself at great risk for big health problems if I stay on it.  If normal, healthy, non-smoking women are having these issues (and I’m assuming that demographic), then I would have to imagine that my vascular malformations put me at even more increased risk.  But how do I find out?  It’s hard enough finding a regular doc that knows the implications of KTS; what about finding a gyno that does??

Guess I’ll be investigating an IUD or something.  Been thinking about it, anyway, as the NuvaRing is $60 a month – and that’s WITH insurance.

Fatigue is very bad lately… I actually got winded going up my stairs to my bedroom last night, heart pounding, out of breath and energy sapped, like I did when I weighed 50 pounds more than I do today.

Not sure if it’s related to KTS issues, but it sure sucks.

I cannot WAIT until February 9.

And can I just add that I’m a little tired of encountering online information about port wine stains and KTS that treat it like a pediatric condition?  I mean, yes, I realize that it’s congenital… but at the same time, it’s not just a kids’ problem, and I have chatted with a few folks who get diagnosed as adults.

Gah.

Hoping and praying that the doctors will know what to do with me.

Sorry for long silence.  Lots going on.  Life is funny like that.

quickie

Not much time for a real update, but I just found out…

Tina Turner has a port wine stain birthmark, on her arm.

Sexy, beautiful, talented, kick-ass Tina Turner has the same kind of birthmark I do.

Perhaps we who bear PWSs are simply marked for greatness.

Or maybe it’s like the colorful snakes in the wilderness: the brighter the colors, the more kick-ass the snake.

Curious: anyone out there know of any other celebrities with a PWS?

Woo, holidays!

I have discovered that I really don’t like the holiday season.  I used to… but for some reason, the time between and including Black Friday and Boxing Day really bums me out, mostly because it just causes me stress.

It also robs me of time.  I had really planned on writing more here during the holidays.

Also – I took pictures, and will be posting them as soon as I can friggin’ figure out how to do it without the formatting looking all stupid.  I discovered that since the birthmark is all on the back of my leg and the bottom of my foot (exception being the toes, two of which are covered), it’s really hard to take a picture of!  I guess I could get my boyfriend to do it… but the holidays were even more crazy for him, and so I was stuck in December doing it myself.  I might still have him take some pictures of the very hard-to-reach spots on my leg.

Or not.  Because another reason to be grumpy about the holidays is the extra weight in January.  Only a few pounds, but it’s a few pounds that makes the difference between feeling decent and feeling pudgy.  Definitely feeling pudgy.  Maybe will get better pictures when not feeling quite so whale-like.  To that end, I am considering going back to dance classes – but I need to be careful with this as it can get very expensive very quickly, and if I’m going to dance, I’ll have to choose one discipline, probably.  Right now, it’s between tap and bellydancing, my two favorites.  Ballet is out of the question; I love it, but it’s one of those cases of wanting what you can’t have.  I look awful doing it as my turnout sucks and my jumps are terrible.  I’m definitely an earth-bound lady!

Minor leg pain here and there, but mostly when I’m on it for too long.  Going to take the suggestion of wrapping it tightly with an ace bandage until my doctor’s appointment.  Only about four weeks to go!  Over the holidays, I told my father what was going on… and I think he was a little shocked to hear that my birthmark was not just a birthmark.  I told him about all the articles I’d found, about birthmarks.org, about the potential risks and what exactly a port wine stain is.  Shocking that my own father didn’t know all this, even the basics; but again, when I was born, they just told my folks it was a “birthmark” and so they thought it was innocuous.  Thank G_d medical professionals today know more about it.

Okay – I’m crunched for time here, but hopefully I’ll have a nice, early night tonight.  I’m meeting a friend tonight at Feby’s for dungeness crab night (yum – and not terribly bad for me!), and then after that I hope to get home to do a little laundry, a little writing, and a little reading.  I got some good books for presents at the holidays, and I’ve cracked into one and am already hooked!  (The Torah for Dummies, in case you were wondering!)

Anyway, just wanted to drop a line and say I’m still here.  To everyone who’s stopped by, read, commented and/or sent encouragement, advice, commiseration and information, I’m so happy and grateful to hear from you, and amazed – perhaps relieved, too – that it’s resonated with others.  Generating dialogue is a great way to raise awareness!

Take care – more later, I hope.

Yes, I know I promised…

…and I swear I will get pics up, seriously!  The holidays are killing me, though.  Honestly, why on earth does it have to be this stressful??  Thankfully, I’ve gotten a good leg (no pun intended!) up on my shopping.  It’s going to be an Amazon.com kind of holiday!

So I noticed something this morning.  I got up in my usual fashion around 6:30 this morning – and of course, usually the first thing you do when you wake up is you go to the bathroom for a nice, long, morning pee.  As I sat there this morning, experiencing relief, I looked down at my PWS foot/ankle.  It was bright purplish-pink – no blueness, no dark purple, no veins bulging.  It looked just like it did when I was younger!  Excitedly, I quickly ran back to bed to show Andrew, and I told him that I was certain it was lighter and pinker was because Id only just woken up and hadn’t had a chance to stand on it too much.  I got back out of bed, and commenced showering, getting ready for my day, etc. – and in the one hour it took me to get ready, the birthmark was dark again, and blue veins reappeared in my birthmark around my ankle.

So… the blood really is pooling in there, I guess.  Just something else to tell the doctor, I suppose.

I should start a list, maybe?

I have decided that I’m going to post pictures of my birthmark here… for whomever wants to see them.  I think it’s natural for folks who have PWSs to want to look at pictures of other people’s PWSs to compare… I’ve certainly been doing that for most of my life, whenever I’ve rarely run into someone with one.  I’m lucky (?) in that there was a kid that I grew up with (we even went to the same preschool) who had one on his face, along his jawline, like half a beard - much more serious implications, certainly – but he was very fortunate and had no adverse effects that I knew of.  He had laser treatments in high school; I was secretly very jealous.  I don’t know if he knows it or not, but I always felt a sort of kinship with him – even though we were in entirely different social circles in high school, and we didn’t speak much.

Anyway, I haven’t met anyone since who’s had a PWS, except for my stepmom – and hers is just a little tiny one on her face that’s barely there.  She covers it up and gets it lasered, and nobody even knows she has it.  To me… it just can’t compare with this big honking purple blotch running the entire length of the back of my right leg, toes to butt.

I’ve seen a lot of pictures online of a lot of PWSs, and I figure if those folks are gutsy enough to put their pix online, then I should be fair about it and get a few of my own up.  Of course, I can’t show you the whole thing because some of my birthmark is on my “nether regions” – and although this isn’t exactly a family show due to my cussing and ranting, this isn’t that kind of blog!!  I will show you, though, the part on the lower portion of my leg and foot.  I will show thigh pictures perhaps in a few months after I’ve had a chance to lose a bit more weight and do not look quite so yicky.  I’m far from fat – but definitely self-conscious.

I hope to do this tonight, after I get home from my workout and have a nice shower.

I’m so tired…

Ha, reminds me of that song in “Blazing Saddles.”  Classic Mel Brooks.  Love it.

But seriously, I wish I had energy.  This fatigue is getting out of control.  Yesterday, after going to bed around 1:00 a.m. on Saturday night and sleeping in until 10:00 a.m. on Sunday (which I never, EVER do – I even missed singing at church), I got up, went to the theatre for strike/build, and stayed until around 2:00.  By the time I got home, I could barely keep my head up and my eyes open, and all I did was lay on the couch until about 9:00 p.m.  My whole body had a dull ache to it.

It is getting to be about “that time,” so it would stand to reason that this could be PMS-related stuff… but I’ve never had it quite this bad before.  Or, maybe, I’ve never really been this alarmed by it before.  Maybe I’m on “high alert” because of other health-related things in my life right now.  It does have me worried, a bit.

Fortunately, I’ve got my appointment on February 9 to examine the birthmark-related issues… among which the fatigue may be.  I read somewhere that people with my kind of birthmark can sometimes have a sort of anaemia associated with it - not surprising, since the blood is basically pooling in my right leg, which could be starving the rest of my body of oxygen.  All questions for the doctor, I guess.