Tap Tap…Is This Thing On?

Why is depression embarrassing?

It is. I don’t know why. Most people I know absolutely get depressed sometimes. And the ones that claim they never, NEVER do…well, they’re the ones stabbing their husbands 180 times and then burying him in the backyard. (That’s a true story. Look that shit up.) And while I admire the upper arm strength one must possess to shank ones husband that many times (her triceps must have been magnificent), I’ll take a bout of sadness every now and then thanks very much.

I can usually feel the depression start to creep up. It’s friendly. Deceptive. A stealthy freefall wearing the mask of ‘taking a break’. Like dipping a foot into a bathtub of very hot water.  You pull back instinctively.  You know slipping into that tub wouldn’t be good.  But you swirl your foot around a bit until suddenly the bite of the searing hot water takes on a level of comfort.  Slowly lower yourself.  Calves. Knees. Belly. Hands. Elbows. Shoulders. Lower and lower. The warm water lapping, pulling you down. Soothing. Swallowing.

My family calls it ‘My Cave’.  They know it will take me days, maybe weeks to return a call. My house gets a little (lot) messier.  The laundry pile gets a little (lot) bigger.  My children give me a purpose at a time like this. I think that if they weren’t there, I would pull the covers over my head and sleep for 100 years.  But little hands tug, demand, need…hugs, breakfast, help, shoes, visits to the park.  The dog needs to be fed.  The sheets need to be changed. The benefit of a kid that bed hops with peed on pajamas…I’m forced to wash sheets.  Not necessarily a bad thing.

The water in the tub grows cooler. I want to climb out. But the thought of standing, shivering, vulnerable while I try to pull on warm clothes…it’s too much. I sink deeper. Lay my head back. The water fills my ears, my nose.  I close my eyes. Safe. Weightless. Tucked away from life and its demands.

I don’t call my friends.  It takes me days to reply to a text.

“Sorry!  Just seeing this!!!!”

Exclamation points are depression in denial.

And then.

I softly bump onto the bottom of the tub.

Thump.

I can go no lower.

I’ve never once thought about killing myself. It’s not that kind of sadness. It’s old stuff that pushes forward, tapping on my heart and demanding my attention.  Things that I think I’m over. How stupid not to be over things from so long ago. The only time I’ve ever thought about the possibility of death was when I was really, really sick. I would lay in bed and wonder if my body would come through. And then I would get pissed off and get out of bed. Of course it would come through. I wouldn’t let some crapass autoimmune take me down.

But a memory. Snippets of an unresolved past. They clothesline you. Lift you off of your feet and drop you into that tub.

So I have to decide. Do I stay down here? Or do I gather my strength and push off, lungs bursting, racing to the top. Break the surface of the water with a gasp. Find my family. My friends. Just waiting. Whether they knew or not. Just waiting. For me to start again.

One Of These Days, Siri…One Of These Days.

I yell at Siri.  A lot.  Not as much as I used to, but still more than I should.

At first we didn’t understand each other:

“Siri, call my mom.”

“I don’t know who your mother is.  As a matter of fact, I don’t know who you are.”

Hand to heart, that robot bitch said that to me.  Can you get your feelings hurt by a computer?  Apparently.  I said some horrible things to her about where she could put her ones and zeros and then read my owner’s manual.  Well…flipped through my owner’s manual until I found the part that told me I had to program my own info into the phone.

Oh.  Sorry Siri.  I take back the part about shoving your you-know-what you-know-where.

We still had our ups and downs.  It was all very Hollywood celebrity like with public declarations of love and jokes (Haha, look everyone!  Watch what happens when I ask Siri where can I hide a body!) during the good times and lots of cursing and name calling with me asking where to hide HER body during the not so good times.

My children began to pick up my phone and yell at it.

“SIRI!  LISTEN TO ME!”

“THAT’S NOT WHAT I SAID, SIRI!!”

Even now, when Purple hears Siri speaking he’ll give an indulgent head shake coupled with a soft chuckle…”Oh Siri…”

We kind of have a messed up relationship.  I am actually for real worried about hurting her feelings so I will pick up the phone and apologize to her after I yell.  Because I wouldn’t want Obama to think I was rude.

So it wasn’t too strange when I recently asked Siri:

“Siri.  Look up acne after finishing Prednisone.”

And she said,

“Acting after Beethoven.  I’m not sure.  Shall I look that up for you?”

“NO.  ACNE. AFTER. PREDNISONE.”

“Acne without predictions.”

“Close.  FINISHED PREDNISONE. ACNE.”

“Finishing predatory accounting.”

“OH FUCK STRAIGHT OFF, SIRI!”

I hauled my butt over to the computer and managed to type in my question.

“OH YES!” said Google!  “Lots of problems with acne after finishing Prednisone!”

Because this was happening to my face.

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Oh the eyebrows! Oh the horror!!

And this was happening on the other side:

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I can’t even with this face…

And it was on my chest and arms.  Not nearly that bad but still there.

Don’t get me wrong, I’m can’t say I haven’t fallen asleep before without washing my face but this…oy.

(Also can I say…steroid swelling almost totally gone!  Yippee Von Skippie!)

I made an appointment with my baby dermatologist (not a derm for babies…literally a very young doctor.  With silky smooth skin that I try not to stare at too much) and was lucky enough to get in the next day (mostly because I think my doctors are fascinated with my weird skin and the chance that I may not be wearing underwear…IT ONLY HAPPENED ONE TIME!)

So there I was at my appointment (pants on, thanks very much!) kind of hoping the doctor would walk in and say, “Oh gracious!  You’re reverse aging!  Lucky you!  Look, you have the ass of a 22 year old girl again!”  And I would say, “Oh doctor, you rascal!” and pinch his adorably smooth cheeks and saunter out to drink a cup of ranch (as one can do in their 20s).

Instead he walked in and said, “Well that looks like a lupus rash.”

Excuse me very much, Doctor?  Don’t you know that I JUICE?

Guess who has 2 thumbs and got her cocky, little(ish), still regrettably 39 year old butt taken down a notch.

This girl!

Because I honestly forget that I DO have an autoimmune!  And though I manage my symptoms (cough cough *incredibly* cough) well, I still HAVE it.  And therefore am subject to some of the rules.

Like…stay out of the sun!  It’s autoimmune sun rash!  Sumbitch.

“Have you been out in the sun a lot?” asked the doc.

To which I answered:

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“First one to give mom a hideous rash is the winner!”

Those bikes.  They have new bikes and they want to ride them 24/7.  They jump on me at 7 freaking a.m., prying my eyelids open and yelling, “LET’S GO RIDE BIKES!” Middle of the day?  “BIKES!” Before dinner. Bikes. After dinner. Bikes.  I’ve replaced vasculitis for bikeulitis.  But of course I’m not going to complain.  Ride away.  Wear yourselves out.

Except that we live on the surface of the sun.

When the doctor asks, “Do you wear sunscreen?” I do what any normal person paying hundreds of dollars a month for medical insurance would do and I lie.

“I sure do!”  Because I mean, hello!  My moisturizer has some spf in it!  And sometimes I remember to put it on!  And then my makeup has it too so that’s practically like wearing a spf spacesuit, right??

Wrong.

My doctor is too polite to challenge me (because he respects his elders) and instead exchanges a raised eyebrow with his nurse which I believe is medical for, “BUUUULLLLSHIIIT.” He also tells me to buy some protective clothing and hats and to be good about staying out of the sun during peak hours, dumbass.  Okay, he doesn’t SAY dumbass but I’m pretty sure he’s thinking it.

So now I’m THAT girl in one of THOSE hats.  And sun shirts.  And I’m not one of those people that carries off a hat with aplomb (SAT word!).  I think I’m going to look like this:

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Just the hat. Not the rest…I’m not crazy.

But instead I look like this:

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Fact. She still looks cooler than I do.

But dorky is still better than that rash!  Brutal!  And I guess no one in their 60s ever said, “Oh I wish I’d spent more time uncovered out in the sun.  This creamy, unlined skin is the WORST!”

And Kyle is super duper extra sweet and SWEARS he loves me in my hats…I knew never making fun of his CROCS WITH SOCKS(!!) would eventually pay off.

Besides none of it really matters because you and I both know…it’s all Siri’s fault.

Get That Zombie A Martini

Guess what tomorrow is?? My first appointment with my naturopathic doctor!

Guess what tomorrow might NOT be? My first appointment with my naturopathic doctor. Because this is sitting beside me right now:

"Look at me, Ma...I'm lousy with the bubonic plague."

“Look at me, Ma…I’m lousy with the bubonic plague.”

I knew it was bad when I woke up with this beside me:

"For my next trick...I shall remove your left kidney using only my little toenail!"

“For my next trick…I shall remove your left kidney using only my little toenail!”

Mom confession. I actively dislike sleeping with my kids. Before I had children I thought I would love it. And we co-slept for the first 10 months. But then it just all went downhill. Don’t get me wrong…I love those first 30 minutes when they first climb in with us. They are all warm and sleepy and snug and sweet. Then they fall asleep and start doing what I like to call, “The Rotating Starfish”. This move somehow allows them to shove a big toe up each one of your nostrils while simultaneously kicking you in the groin with that phantom sleep foot they grow. It’s an impressive trick but I’m not a fan. So we’re an ‘everyone in your own bed’ kind of family. EXCEPT during times of illness.

Anyway, that is a sad, sick, feverish boy. DOH. Ain’t that just the way. So I called and put a tentative hold on my appointment. Which makes me kind of sad and frustrated. But. It’s all good because…

Last night Bruce Lee told me to ‘be like the water’. What? Bruce Lee doesn’t talk to you in your sleep? Whatever, weirdo.

Well hello there Mr. Lee...hope you like your gals rashy...

How nice of you to join me, Mr. Lee…hope you like your gals rashy…

What actually happened was that I fell asleep on the couch last night.

(Side note: I hate falling asleep on the couch. Subtract couch sleep time from total night sleep time because it doesn’t count. And then by the time I get up and brush my teeth and put on my pjs, I’m wide eyed awake.)

So Kyle was watching…something…I saw the words MMA and immediately fell asleep. But I half woke up to very enthusiastic Bruce Lee talking about water.

“You must be shapeless, formless, like water. When you pour water in a cup, it becomes the cup. When you pour water in a bottle, it becomes the bottle. When you pour water in a teapot, it becomes the teapot. Water can drip and it can crash. Become like water my friend.”

That’s a good lesson for me this week. I’ve kind of been in a ‘when’ mindset. An ice cube, if you will. “When I get this autoimmune under control.” And that’s good. That’s better than an ‘if’. But it becomes so easy to focus on the far goal that I forget to embrace everything else that is happening during this process. I kind of think ‘just get HERE and everything will be better’.

Remember when our house burned down? Most of you know that. In 2011 we lost our house in the Texas wildfires. That’s not a boohoo-poor us statement because let’s be honest…we had a year of inconvenience and now we have a brand new house that kind of rocks my world. But the big statement from everyone after it happened was, “NEXT year will be your year. Just get through this and it will be all good.” When. When this is over then you will be somewhere else. But where?

I’m going somewhere with this, I promise.

My knees stopped working this weekend. Damn. Then they started again. YAY! Then they stopped again. Damn Damn! (That’s one for each knee.)

I guess this is why they call it a connective tissue disease…because it affects your connective tissues. Ohhhhhhh…NOW I get it. It’s very frustrating. It doesn’t fit into my ‘when’.

The downside is that when they aren’t working, I look like I fool when I try to get up off of the floor. It’s a very dramatic, embarrassing roll over and grab onto something to pull myself off of the floor.

The upside? Well the upside for YOU is that if you friend me before the zombie apocalypse you are almost 100% guaranteed to outrun me. Thereby leaving me to be consumed by zombies. Not like you would, right? Right?! 😉 Meh…it’s okay. I’d probably ditch you too.

In case you can’t tell, we’ve been watching The Walking Dead. I fought it. I didn’t want to watch it but since we’ve canceled cable Kyle has been watching the first 2 seasons on Netflix. Every. Night. It was inevitable that I would be sucked in. What have I learned? Zombies don’t move especially fast but they can definitely move faster than me right now. Which is good for YOU. You’re welcome. Also…there is ALWAYS someone out there worse off than you. My knees might hurt but at least I’m not being chased by a zombie herd.

And isn’t that the truth.

Because you know what is better then the 2 hours of knee pain I had? The other 46 hours of the weekend.

This:

I don't even have anything funny to say...it just makes me happy.

I don’t even have anything funny to say…it just makes me happy.

I watched this:

Mmmm...chunky guy juice...

Mmmm…chunky guy juice…

…and it was inspiring to watch someone else get off of the steroids. But also humbling to see what a slow, patient process it is too. It’s a great movie though, I recommend it. And I’m down from 60 mg/day to 45 mg/day as of today! Yay!

I conquered my first batch of homemade yogurt. Then I completely 100% ruined my second batch. I mean…I KILLED it. I boiled that milk to the point of oblivion. Apparently putting milk on the stove to boil and then meandering outside to sit and rock for awhile is a ‘bad idea’.

I absolutely stuffed my body with healthy, nourishing food. When I told Kyle that I had made him a delicious dinner last night, he gave me an enthusiastic, “Awesome!”. And when I told him that dinner didn’t involve lentils, he paused and said, “Oh that is SUPER AWESOME!” The point is that 24 hours of the day I’m married to a lovely man who supports me 1000%. Even if he does suck at diaper sizes.

And last but not least I read my medical records that I picked up for my naturopathic doctor. If you want fascinating reading, I suggest picking up your medical rec-zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz…

Holy boring. I don’t know what I expected?

“Patient has a sparkling wit and great taste in earrings. I’d prefer if she’d wear underwear to her appointments.”

I'd like to eat your liver with some fava beans and a nice Chianti...

This is how I show up in his office every week. Adorable, no?

Or…”Patient appears to be used by her children as a jungle gym…perhaps suggest she uses my beach house for a week of relaxation. After all, she is paying for it.”

"Wheeeeeee...vasculitis slide!"

“Wheeeeeee…vasculitis slide!”

Instead it was mostly stuff like, “Patient has vasculitis.” “Patient still has vasculitis.” “Patient is being a pain in the ass and continues to show up in my office with this vasculitis.”

Like Deepak said during my 43.2 seconds of successful mediation…my health is like a snapshot. It will never be the same from one moment to the next. I just need to embrace the moments of feeling good. And also embrace the moments of feeling crummy but then discard them and move on. At least I think that’s what he said…I had a child sitting inside each of my ears.

So I will TRY to be water. If my knees hurt, that’s the shape I’ll take. If I wake up covered in rashes and vasculitis…then that will be my shape for that moment. But just for that moment. Until I’m ready to pour myself into another vessel.

Just don’t judge me if it’s a martini glass. 😉

I Love You Rocky Dennis.

Hey kids.  Did I ever tell you about the time I frightened the girl at the Time Warner Cable office with my misshapen face?  Probably not, since it just happened yesterday.

First things first.  We canceled cable.  Because we are enlightened people who yearn to play chess and hold spirited political conversations rather than melt our brains with television.

Naaaah.  It’s all part of Budgetopocolypse 2013.  I’d watch Snapped marathons until my eyeballs bled if it was up to me.  Fascinating.  And it keeps the husband in line.

Pearls!  Lipstick on a napkin! A lit match!  Those are all signs of quality television show, amiright??

Pearls! Lipstick on a napkin! A lit match! Those are all signs of a quality television show, amiright??

So.  I woke up yesterday with the usual 38lbs of drooling toddler chunk sitting on my chest.  The additional 48lbs wandered in a few minutes later and the day began.  Except.  I noticed my face felt kind of weird when I talked.  I didn’t really think too much about it, what with the 86lbs of children earrings I was wearing into the kitchen to make breakfast but eventually (after milk milk cereal cereal smoothie smoothie I wanted the bulldozer spoon NO MINE NO MINE MOOOOOOOOOOM!) I made it to a mirror.

And. Oh. Em. Gee.

I was lumpy.  Lumpy like Rocky Dennis. Remember him?  The kid from Mask.

Awwww…that’s awful.  Of course I didn’t REALLY look like Rocky Dennis.  Just like I don’t REALLY have jowls like Winston Churchill.  I just FEEL like I do.

Also…I loved Rocky Dennis.  Remember the hot rock for the color red and the icy rock for the color blue?  So sweet.

But I digress.  Back to my face.  Or what used to resemble my face.  Lumpy.  Like, big weird lumps under my skin.  Forehead, chin, the bridge of my nose was swollen.  My cheeks felt like they had 2 square inches of hard pads underneath them.  I looked like one of those women who thought it would be a golly-gee-swell idea to get $50 collagen injections from a ‘doctor’ in a ‘clinic’ in South America.  Only to be shocked later on to find out he had used donkey urine.  I looked like Priscilla Presley…and not the Elvis Priscilla…

But wait…there’s more!  Order your weird misshapen face right now and we’ll throw in a new mystery rash!

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Anybody got a needle and thread? Cause I’m ripped.  Seriously…check out those guns!

Gross, right?  I know I publish a lot of weird pics but that’s mostly for anyone else ever looking for answers.  And the occasional vasculitisophile (hey, I ain’t judging).

I call my rheum and explain the symptoms to his nurse.  She calls me back and tells me that the doctor wants to see me the next day to check out my vasculitis (check it out, Doc…it’s STILL there!).  As for the lumps and arm rash?  He thinks it sounds like steroid induced acne and that I need to see my dermatologist as soon as possible to make sure.

Uh…no.

First of all, ANOTHER gross side effect??  Second of all, it’s NOT acne.  I had a wildly overactive sebaceous gland through my 20s so I know from acne.  And this ain’t it.

"Leave Mommy alone...she's finding her happy place in here."

“Leave Mommy alone…she’s finding her happy place in here.”

Now if it was up to me I would have hidden in the house all day.  It was that bad.  But as you may have guessed…I miiight…just maaaaybe have a little problem with procrastination.  And I MAY have put off returning the cable equipment until the last day.  Of the 14 day return period.  Oooof.  AND we were out of milk.  Double oooof.  I had to lump it up and leave the house.  No problem though, Time Warner has a big equipment return box right outside the office…I don’t even need to go in!

Except they don’t anymore. Which means me and Lumpy (I consider my face to be its own entity by this point) have to get both kids and all of the equipment out of the car, into the office and past the ‘Take A Number’ machine.  It’s a machine that pops out tickets.  It may as well be a chocolate covered clown juggling puppies.

I herd them into some chairs and YAY I’m the next number.  Phew. I luck out a second time and get the world’s most uninterested ‘customer service’ girl who doesn’t even look up at me.  Score.  I heave the bag with all my equipment up onto the counter.  She sighs a sigh that lets me know I’m perhaps the stupidest person that ever lived and informs me that I need to take everything out of the bag myself.  No problem, lady, just keep staring at your nails…do not look at my face.  I start to pull out the equipment.  Modem…other computer thingy…dvr…remotes…oh, did I forget to mention that my other half had been kind enough to unhook and pack everything up for me the night before?  Did I forget to mention that he didn’t dust or wipe off one thing so as I’m pulling out the equipment, herds of dust bunnies are stampeding and swirling through the air.  Through. The. Air.  Some of my hair is mixed in there.  It’s pretty gross and embarrassing (hey…it’s been living under the desk behind a box!).  This startles her.  She looks up at my face. I see her eyes widen.  I see her glance at the rash on my arms where my sleeves have fallen back because I’m literally trying to catch dust bunnies in the air.  I’m half laughing and half apologizing and mumbling something about killing my husband.  I look like a rashy fool.  But an apologetic rashy fool.  And what does she do?  She reaches for her hand sanitizer.  Twice.  That girl stared at all of my weird crap and then she sanitized herself.

Now part of me doesn’t blame her.  I’m obviously a mess.  But the other part of me is pissed.  So I stopped apologizing.  I signed my receipt.  Then I licked the side of her face and left.

Nooooo.  But I wanted to.

Flash forward to this morning.  I wake up and my face is back to normal!  Yay!  But my arms still look like I thought it was a good idea to reach into a fire. Booo.  I drop the kids at school and head up to see the doctor.

Here’s the good news.  I got taken off of 2 of my meds today.  Wooot!  I asked to be taken off of the Colcrys (the gout medicine).  First of all, what is it really doing?? Second of all…it costs $225.  A month.  He agreed that we could stop it.  He looked at my arms and immediately expressed concern that I was having an allergic reaction to the Plaquenal, so that is out too.  Happy dance!  Then we had a nice talk about steroid side effects.  He restated that although this wasn’t steroid induced acne, it was a future possibility but I assured him that I was holding out for enough facial hair to grow a hipster mustache that I could diabolically twirl while tying young girls to railroad tracks.  I also informed him that my face was getting fat to which he replied, “I know.”  That’s it…I’m bringing the kids with me on the next visit.  That’ll learn him.

"Now I shall untie you and make you babysit my children!  MWAHAHAHAHAAAA!"

“Now I shall untie you and make you babysit my children! MWAHAHAHAHAAAA!”

Then it’s downstairs for more bloodwork and upstairs to my derm for skin biopsy #5…I’m getting pretty scar-o-licious.  Don’t be jealous.

(Have I mentioned that I think my dermatologist might be 14 years old?  The first time I had to stand in front of him in my underwear I half expected his mom to bust into the room and yell at me to put my clothes back on.)

Aaaaaanyway…I ask the him if this could be sun related??  We all laid on the grass on Sunday and looked for cloud pictures for a long time and even though I stayed in the shade, I have been reading that people with autoimmunes can be sun sensitive.  He thinks it might be something called polymorphis light eruption.  Basically women with ‘rheumatogical issues’ (oh I’ve got issues all right) have this problem in the spring when the sun is higher and hotter.  Weird, right?  It should stop happening by summer but he recommended some good sunscreens.  But we’ll still wait for the biopsies for final results because it could still be a drug reaction.  “We’re seeing more of that with Plaquenal users lately…it might be a manufacturing change.”  Well that’s just fantastic.

Anyway, to make a loooong blog post even longer, something happened today that made me think of you guys.  I had the sweetest Thai phlebotomist with an accent so thick I could barely understand her.  Right as she was getting ready to take my blood another tech stuck her head into the room and asked her for help with a ‘difficult patient’ (of course I’m immediately picturing blood spraying everywhere).  My tech started to take my blood but I told her to go help the other lady first.  When she came back she gave me a hug and said, “You were so sweet to share, you were just so sweet to share.  Thank you.”  I thought that was a funny way to phrase it but then I thought about it and I realized she meant that she was thanking me for sharing my time.  And that’s when I thought of you guys.  The love and support I’ve received from this blog already have been overwhelming.  I’m blown away with I see the number of people who have visited this page.  You choose to take time out of your day to read this and I want you to know what that means to me. So thank you. You are so sweet to share.

xo Danielle

P.S.  I have my first appointment with a naturopathic doctor on May 7th!  Yay!!  It’s a 3 hour appointment and she sounds amazeballs!

P.P.S.  I didn’t want to do my pantry today but I DID!!!!  However I’ll blog about that tomorrow since this one got a little long-winded.  But here is a quick pic:

Oooh it's purdy!

Oooh it’s purdy!

Today I Woke Up With A Fat Face

Is that politically correct?  Probably not.  Did I care when I stared at my puffy cheeks this morning?  Nope. Was I crying all night?  Had I finally realized that my 2 small children were never going to stop wiping questionable fluids on my pants?  Nah…I cried about that 2 nights ago.

It. Was. The. Stupid. Steroids.  I’m getting the dreaded steroid moon face.  Plus a nice 10lb weight gain.

What's worse...the number of pills per day or the fact that I keep them in a Max & Ruby bag??

What’s worse…the number of pills per day or the fact that I keep them in a Max & Ruby bag??

60 mg of them a day.  For over a month.  And they aren’t working.  The Prednisone (steroids) are in addition to the Plaquenil (an autoimmune drug).  And the Colycrys (a drug used to treat gout…which I do not have). And the huge doses of calcium, vitamin D and Prevacid to reverse all of the damage that long-term steroid use can cause.  Oops…don’t forget Zyrtec and Allegra for the hives.  What’s all of this for?  “The kissing cousin to lupus.” A little (lot) of vasculitis.  And some hives that would make you slap a puppy.  (Sorry puppies…just kidding…) Within the last 6 weeks I’ve found myself thrust (unwillingly) into the bizarre world of a undiagnosable autoimmune disease.  What started as a bad case of the hives and some tiny bruises on my legs quickly spiraled into a visit to the internist…which led to the allergist…which led to the dermatologist (and some nice biopsies) which landed me straight into the lap of a rheumatologist.  Well, not LITERALLY into his lap…although that would explain my multiple appointments…hmmmm…

Yup.  That's exploding blood vessels.

Yup. That’s exploding blood vessels.

Seriously. Itchy.

Baby Got Back…hives…

Baby Got Front Hives Too.

Baby Got Front Hives Too.

See...I couldn't slap a puppy with that hand even if I wanted to so just calm down!

See…I couldn’t slap a puppy with that hand even if I wanted to so just calm down!

And everyone just thought I was a dainty little walker!  Blush!

And everyone just thought I was a dainty little walker! Blush! (And yeah, yeah, yeah…I need to puts the lotion on the skin…)

Scattered in there were more blood draws than I can count (one visit consisted of a nice but mildly sadistic Thai phlebotomist and her 13 glass vials waiting to be filled…you need a cookie after a visit like that…), a chest x-ray to rule out Wegener’s Disease, a steroid prescription, a stronger steroid prescription, a stronger steroid prescription and finally…a refill of that strongest steroid prescription.  And let me tell you, those things suck.  But more on that later.

So I says to my doctor, I says, “Doc.  Give it to me straight.  Are you telling me there are no answers?”

To which he replies, “Of course there are answers.  You definitely have an connective tissue disease.  But you don’t fit the symptoms enough to know which one it is.”

So that’s an answer.  But it’s a sucky one.

My ANA panels show me as having Sjogren’s Syndrome.  Sadly, this is not a Bjork like condition that causes you to fling dead swans around your neck.  It’s more of a ‘all of your glands that produce tears and saliva are destroyed’ kind of thing.  Venus Williams has it.  Very glam.  So I settled into that, did too much reading on WebMD, freaked myself out and then soothed myself with the knowledge that Venus and I would become very close friends and I would in fact receive valuable tennis lessons from her and finally nail that back swing.

Sorry Venus.  Put away those tennis whites and dry those tears (ooooh…too soon?).  Looks like you can come up positive on a blood test for an autoimmune but if you don’t have the symptoms (which I don’t) then they don’t call it that.  And as blinky and dry eyed as I felt when I read about Sjogren’s, I have to say that I don’t have the symptoms.  If anything I error on the side of spraying it when I’m saying it.  So that leaves me with the ‘kissing cousin to lupus’ diagnosis.  Great.  I got the inbred disease.

Now don’t get me wrong.  I’m not whining.  Well…I’m whining a little.  But please understand that I get how lucky I am.  I have and have had friends with way worse things.  I was diagnosed early on, before kidney or liver damage.  Most people search for years before they get answers. I’m not dying (well, not in the RIGHT NOW sense…I mean, we’re all dying…yada yada yada).  I actually feel fine.  If I avoid gluten then I don’t get sore joints.  All of my other blood work comes back great. I was actually lucky to have such intensely visible signs to let me know that something inside my body wasn’t working.  Well, was actually overworking.  I’m just frustrated.  Because nothing is working!  My immune system is like Honey Boo Boo on a rampage for pig skins and the doctors canNOT make it stop.  They are stumped.  Both of my rheums (let’s just call them rheums because I’m lazy) can’t figure out why my vasculitis won’t go away.  I’m on huge amounts of steroids in addition to the extra doses they jab me in the boohiney with every time I enter their office.  The last time I was there they were talking about adding ANOTHER new prescription to the mix.  But I can’t.  I just can’t.  They will throw you anything you ask for.  Sleeping aid? (Steroids MESS up your sleep).  Antidepressants? (Steroids make you a little…edgy.  I kicked a wall.  Bonus points for not kicking a human, right?)  Luckily for me I can manage to sleep 6 hours a night (BUT IN THE NAME OF ALL THAT IS HOLY DO NOT WAKE ME UP IN THE NIGHT!) and my usual vibe hovers around chill so edgy and irritable is pretty manageable.

But here is the deal.  I feel like my body is giving me a gift.  It’s literally screaming at me to let me know that something is horribly wrong in there.  My first instinct is to just lift this heavy burden off of my lap, hand it to a doctor and say, “Here. You. Fix this.  Fix Me.”  After all, I’m busy.  I chase kids and clean up enormous messes and rewash the same load of clothes 3 times (that’s just a damn commitment to procrastination) and never, ever, ever feel caught up.  So please.  Fix me.

But what happens when they can’t?  Or what happens when I realize that my health is up to me?  That I will have to make big, big, bigger changes to the way I shop and eat and think.  I’m not shunning western medicine.  I think there is a place for it.  But I think there is another way too.  A way to stop fighting my body and start listening to it instead.  To work with it. We honestly take more care into the fuel we put into our cars then what we put into our bodies.  I’m just as guilty of it as anyone.  I’m the one that was eating Cheetos with my head stuck in the pantry tonight.  I’d call myself a lazy hippie.  I know most of the facts…I’m just too tired to use them half of the time.

This blog will be my journal of my journey.  Journey Journal?  Ugh…do NOT say that 5 times fast.  Of course I’ll ramble on about other stuff too…I can’t help but make fun of my kids on occasion.

I mean, they live in their Underoos and dip their bacon in butter...who wouldn't make fun of that every once in a while??

I mean, they live in their Underoos and dip their bacon in butter…who wouldn’t make fun of that every once in a while??

And of course there will be food and book talk (gluten free…sorry ’bout that).  But I thought this experience would be interesting to share and I’ll try to do it with humor.  And no more creepy skin shots.  (Fingers crossed).

xo Danielle