May 26, 2013

Brrrr. . . it's cold out there!

Things to do on a super soggy and unseasonably cold long weekend - delve into your next armchair adventurer book, spend countless hours getting your next vacation's itinerary well under way, remove every single item from your refrigerator and freezer to do a deep cleaning and reorganization, remove all of the camping totes from the closet and go through each and every item in each and every tote, watch Charlie and the Chocolate Factory (again), build a huge pile of items to bring out to the road for a Craig's List Curb Alert as soon as the rain passes, even more greatly than usual enjoy Body Sensing and Yoga Nidra knowing you don't have to bust your butt later in the day getting ready for work and school the next morning.  :)

Things to NOT do on a super soggy and unseasonably cold long weekend - dust, clean the sinks, scrub the toilets, shine the showers, vacuum, change sheets, wash clothes.  :))

May 12, 2013

I admit it. . .

I hate Mother's Day.  If I could abolish it, I would - because frankly, it seems to me like it's some sort of cruel joke.  Every single Mother's Day, I get to do all of my typical "chores".  There's no celebration, there's no day off, there's never been a breakfast in bed or even a special trip out for breakfast.  Nope.  I get up and make breakfast for others, clean up, do laundry, get groceries (and carry them all in and put them away without help), pick up the house, prepare food for the upcoming week, do some more laundry, make dinner, clean up again, etc.  

I'm going to say it.  

It sucks.  It really truly sucks. 

Should I be thankful that I have this blessed opportunity to be a mom?  Sure, and in general I am.  But on one stinkin' day of the year, it sure would be nice if my family were thankful for what I do day in and day out - and actually showed it.  

The only good thing about it used to be talking to my own mom on the telephone, and this is the third year now I haven't been able to do that.  

So there you have it.  All this day is to me now is a very painful reminder that my mother is no longer here and a reminder of how many unappreciated tasks I still have to attend to.  Which I'm going to go do right now.

May 4, 2013

My other autoimmune ailment. . .

Guttate Psoriasis.


Ugh.  That's one of the most non-disturbing pictures I was able to find of the lesions, and I can still hardly stand to look at it.  Brings back a lot of terrible memories.  Guttate is from the Latin word mean "drop", and apparently it was decided to call this type of psoriasis "guttate" because someone (or someones) a long time ago thought it looked like the person was out in the rain and got a lesion where every drop of water fell.  Something like that anyway.

One to three percent of the population has some form of psoriasis, and guttate is a rare form of psoriasis, with only about 2% of psoriasis "sufferers" having this particular type.  Most of us are familiar with the more common chronic plaque psoriasis.  This is the same general disease manifested quite differently.  The lesions aren't as thick and large but tend to be much more widespread on the body.  The plaque lesions are usually in patches; the guttate lesions are in "drops".  The plaques lesions tend to be chronic; the guttate lesions tend to appear as acute outbreaks.

While it can certainly be considered a skin disease, it's actually an autoimmune disorder.  The immune system gets messed up and starts having the body produce new skin at a much faster rate than the body can shed the old skin, and the new skin stacks up on itself causing lesions.  
 ". . . special white blood cells called T-cells become overactive. These T-cells "attack" the skin and set off a cascade of events that make the skin cells multiply so fast they start to stack up on the surface of the skin. Normal skin cells form, mature, then are sloughed off every 30 days. But in psoriasis the skin goes through this whole process in 3-6 days." (
 Sounds nice, huh?  Yeah.

I experienced my first acute outbreak nearly eight years ago.  At first, I thought I was having an allergic reaction to something in the shampoo I was using because I started to get itchy sores on my head.  I didn't think much of it, assuming it would self-correct after discontinuing use of the shampoo.  It didn't.  I ended up having lesions covering almost my entire body, head to toe.  The ones all over my head started to bleed.  To categorize it as awful would be quite an understatement.  It was hell. 

Unfortunately, that first case took a good six months to get under control, and I was MISERABLE.  Every night, I would lie awake feeling the terribleness of new lesions forming.  Literally, in the morning, I knew without even looking where I had new lesions.  My life consisted of cool vinegar soaks, coal tar oil baths, severe headaches from the strong vinegar and coal tar smells, and multiple times a day slathering my whole body with sticky icky steroid gel.  I hated going out and when I did, I covered as much of my body up as I could.  I now have a generous supply of turtlenecks.  

At some point, I started going to the dermatologist's office five times a week for UV therapy.  (It's kind-of like a megastrong tanning unit with none of the "harmful" rays blocked, and the light is SO strong I was never able to stay in the "box" for longer than 1 1/2 minutes a visit without burning.)  Any slight irritation or stress to my body (even being in too warm of a room) would cause the lesions to become more inflamed and irritated.  I remember at one point going to the dermatologist and his breathing an audible sigh of relief when he saw me.  He said he had been worrying all morning and was nervous about seeing my condition; he was so relieved that I was actually starting to show some improvement.  I had some mixed feelings that day - thrilled I WAS starting to show improvement but sad that even my doctor had been nervous about looking at me.  :(

Quick, funny story.  The first time I got my steroid gel, the dermatologist prescribed a large quantity for me.  When I went to pick it up, the dermatologist was quiet for a moment and then looked up at me from his glasses.  He said slowly "this is a very big tub of steroid treatment".  Without hesitation, I said "that's good because I have a *very* big problem".  Hee hee.  I always smile when I recall that exchange.

Definitely the first outbreak was the worst, but I've had a couple other pretty bad ones since then as well.  The big difference is now that I'm aware of my own triggers and always keep an eye open for the very earliest signs, I feel like I have some control over it and at any sign of lesions whatsoever, I start treatment immediately.  It doesn't get resolved immediately, unfortunately, because the lesions seem to need to go through some sort of full cycle (which takes at least a month), but these days I'm pretty adept at keeping it under control.  At one point, my dermatologist and I had talked with each other and with my health insurance company about installing a medical UV treatment "box" in my home (that's how frequently I've needed to go to his office for treatment!), but so far, so good.  Things haven't gotten *that* bad *that* regularly.

Instead, nowadays I spent quite a bit of time sunbathing.  With no sunscreen.  At first, I thought my dermatologist had lost his mind when he suggested I do that because we are always told to use sunscreen, limit our time in the sun, keep our skin covered, etc.  I was, of course, concerned about getting skin cancer.  He said that the sun's damaging effect on most people is that it thins the skin, which is precisely what my body needs because it produces too much skin.  He said that instead of the sun's causing my skin to become abnormal, that I'm so far out on the other end of the spectrum it brings my skin back to normal.  So during the warmer, sunny months I'm pretty much fine because I make sure to spend a lot of time in the sun.  Every year, though, I muscle my way through the last half of winter, becoming increasingly desperate for strong sunshine as I slowly have to work harder and harder to keep this beast at bay.  If you see someone downtown laying out in public view in a small 2-piece bathing suit during lunchtime on the year's first real warm days, there's a good chance that's me.  Yep, I become that desperate.  If in the future, the struggle to make it through the winter becomes overly difficult, I'll probably end up moving to a warmer climate just so I can have enough sun year round.

Why am I mentioning all of this now?  Well, because after the trip to DC that proved to be somewhat of a stress to my system, I had an acute outbreak of the guttate psoriasis covering my entire back.  Remember I came home, slept a ton of hours, and then could barely function the next day?  It was that next morning I woke up with it, and it was quite depressing.  Being the end of winter, I was already fussing with a few relatively mild lesions starting to make their appearance, but the stress on my body of the trip apparently put those T-cells over the edge.  

I doubt it's a coincidence that I have both of these guttate psoriasis and colitis issues, but I'm very intrigued about how they may be related.  Is there an actual connection between them or is my immune system just so inherently messed up that I'm going to keep becoming inflicted with weird ailments and having to figure out ways to deal with them?  It's one of my top "I wonder. . . " questions.