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

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53 thoughts on “Today I Woke Up With A Fat Face

  1. Oh. My. Lordy. It’s been waaaayyyy too long since we’ve talked! I’m so sad to hear all this!! I mean, you are hilarious, but STILL! I hate hearing you’re so sick & especially with frustrating western doctors. I can’t wait to hear all about your alternative medicine approaches!!! I need to either go on fb more often or you need to start blogging more 🙂 Keep me posted!

  2. Yay! I love it! You managed to make your health issues funny and I think this will be a greaty outlet for you! Way to go!

  3. Ahhh Solly that sucks! ( Chinese herbalist might say the same thing!) That my friend, is a serious amount of pills you got going on there. Aside from the hives, I had to comment on the stomach of the mother of two.. Holy Shiz mama, I’m still rocking the post baby bump (and lumps) 4 yrs later but you have doubled your offspring yet have the belly of a teenager!
    In solidarity I might just join you in your new gluten free diet and you know I, like you am a big bread and butter fiend. Who knows, might even do me some good!

  4. D, I really enjoyed you humor in the blog! I hope meds work sOon and you find out what works for your body!

    Love,

    Stacie

  5. OMG
    Danielle, I just left a long message that I think was lost. iPhone finger now too stiff. Just know you can call us for anything and we’ll keep you and family on prayer.

  6. I am so happy you started this! I love you and I’m so sorry you are going through this horrible horrible thing – but you don’t have to go through it alone. We are here to go on this journey with you and be the shoulder, friend, therapist you need to cry on or punch for that matter! 🙂

  7. You’re are the funniest person I know and I like the skin shots!But seriously,I love your mix of humor and honesty about it all,especially being a Mom.

  8. I love that youve started your blog, cant wait to keep reading more, with everything youve got going on you are still the funniest person I know!! I always ask myself, what would Danielle say?!!! talk to ya soon;)

  9. Well it is about time you shared your AWESOMENESS with the world my sweet friend! I am so sorry that you are going through such a medical mess right now. Please know that I am here for whatever you need! I can’t wait to see where this blog takes you!

  10. Dang woman! What a mess! Way to take it as an opportunity.
    I just made the same comment to a friend yesterday, we Westerners care more about what we feed our cars and less about what we feed ourselves.
    Fat, puffy, steroid face sucks. So does steroid edginess. Steroids also make me itch like I’m going through drug withdraw.
    Anyway, where do you buy your Underoos?

    • Mine personally? A very questionable website…
      Ooooh the boys? They are just from Target. Do they even still make underoos? Those things were awesome…I mean matching undershirts?? How could you go wrong?

  11. Danielle! I had no idea you’ve been going through this hell. That looks so incredibly sore 😦 I love that you started a blog. I love your writing, you have a gift. My mom was diagnosed with Celiac disease a year ago and does gluten free. I’d be happy to pass on some of her recipes!

  12. All I gots is a WOOP WOOP you go ooonn with ya bad self. So proud of you for starting this. Definitely will be an outlet for you. Keep on apostin’ because I can’t wait to read more!!!!! Xoxoxo

  13. My sweet Danielle, you are beautiful (inside and out). You know what I’ve said to you all along and I will say it again and again “you are an amazing writer and thank you for sharing your awesome witty personality with all of us. I wish I could waive a magic wand or wiggle my nose like bewitched and take all the hurt and discomfort away from you.” You are such a strong person. You teach me everyday what “strength and kindness and good spirits really are!” I LOVE YOU TO THE MOON and will be here for you ANYTIME!! Mah/Keekers.

  14. Danielle! You poor thing. I got shingles shortly after I had Benjamin, and it was one of the toughest things (on top of post-partum depression, not being able to continue breatfeeding, and the exhaustion of having a newborn that cries ALL the time.) I can’t imagine the frustration of not being able to know what is going on. I love the humor in your blog, and I look forward to reading good news. Until then, my prayers are with you (and your family)! 🙂

  15. Sissy you are amazing! I am so proud of you for starting this blog. I can’t wait to read more. You have a way with words and your upbeat positive attitude is going to kick this horrible diseases @ss! I love you true blue. Keep on blogging!

  16. Danielle I am so sorry you are having to go through this. Sending prayers and big hugs. You have such an inspiring voice – thank you for sharing your journey !!!

  17. Thanks Keek for sharing…Dannniellle…MY MY Lovely Solly!! …It must feel like a really lousy soap opera!!! Days of our lives it aint !! Have you tried Turnip Greens? ::)) just kidding…sorta. Greens are good for everything :)) collard, turnip, spinach…I know with your sense of humor ..that you are facing it forward but also know it is very frustrating that with all our Western sophistication medically as the AMA constantly reminds us that esoteric and rare type diseases or “conditions’ are very hard to diagnose and even more scary …almost impossible to develop the correct meds or treatment to solve it. Thus what you have experienced…TESTS MORE TESTS and not many good answers…My sis , Patsy almost died of gluten intolerance before the gastroenterologist finally figured it out. Do they have any idea if it is diet, genetics, or ???? JUST KNOW THAT WE LOVE YOU…..and have you checked the Mayo Clinic? they are GOOD with rare diseases. Bruce and I are praying for you, Kyle, Levvvvvv and Axxxey. HUGGGGSSSSSSSSSSSSS Dadddi-O

    • Thanks Daddi-O! It’s just early days so we’re still figuring things out. I don’t think it’s unusual to have an autoimmune that can’t be classified, I thinks it’s more that they can’t figure out why they can’t suppress my immune system!

  18. Well, yuck. I’m staying tuned. Maybe some of our symptoms will match and I’ll get a free diagnosis by reading your blog. Sorry you are having crummy health stuff and no solid diagnosis.

  19. Hey Danielle, this is an awesome way to get the word out educating others and self therapy discussing it in public – Proud of you. There are so many out there that either have the same symptoms or knows someone who does. More eyes and knowledge can only help. You write so well and have such a good spirit about this considering all you go through. We are always here for you no matter what and love you and the Sollly family. Where there is a will there is a way and we hope some day soon this unfair condition is vanished or at least fully manageable.

  20. Hey there! I am a friend of Somer’s. Blake, my cousin, sent me this. It sucks to see other people suffer from this crap but there is solace in knowing that someone knows what you go through. I have Behcet’s Syndrome. Diagnosed about 4 years ago after years and years of doctors throwing their hands up. I too get the horrid hives all over my body. The splotchy rashy looking discoloration. The knot like red bumps on the skin the either burn like fire or itch like crazy. I also get about 20 mouth ulcers at a time. As awesome as all that sounds, I am one of the lucky Behcet’s kids that does not get some of the other horrible stuff. It sucks when you have kids and they don’t understand why momma was up all night in agony of why mom can’t walk well because her body is blown up like a balloon… Anyhow, cheers to you for writing the blog and I hope you find peace. Well, peace, immune suppressors and steroids. Ha.

    • Hi Fallon!
      Were your ears burning last night?? We were actually talking about you! Congrats on the baby on the way! We’ve actually met once when you and Blake were playing at the Salt Lick…I recognized you as Somer’s friend.
      Thanks so much for sharing your story…I just went and read about Behcet’s Syndrome…lucky you…a rare disease! I’m definitely going to ask the doc if that was part of the bloodwork they did! And yes to the kids…they just know that sometimes mommy gets ‘the red bumps’ and they have to be really careful but it’s not like they are going to understand more than that. I used to get different horrible, hard, red bumps (elbows/knees/feet and hands) that were biopsied and diagnosed as dermatitis herpetiformis…basically celiac that comes out through the skin. Taking out gluten totally cleared that up (as well as sore joints)…only to segway into the hives and vasculitis. It IS frustrating!
      I’m so glad you took the time to write and hopefully we can talk again soon!

  21. wow! just wow! I am so sorry you are having to go thru all this!! I love your attitude and your sense of humor in this blog! (and that’s says a lot, I don’t read blogs unless it’s a DIY crafty site…but will definitely keep up with yours!) You are gonna kick this thing in the butt…instead of another wall 😉 Let me know if you ever need anything!!!

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