dry cry

The last weeks/months remind me of this previous blog post. The post discusses my recurrent fevers of unknown origin and joint pain with a flavorful dash of Roxy Doxy and the Texan thrown in for interesting spice.

https://onachickenwingandaprayer.com/2013/09/23/down-time/

Seems the symptoms DO have a name after all.  The autoimmune disease, Sjogren’s Syndrome.  Only took me 4 years to come up with this explanation. There is no cure. In the meantime, I’m sampling a tasting menu of -ologists:  rheumatologists, gastroenterologists, cardiologists, podiatrists, urologists, optometrists and dermatologists. Can a nephrologist be far behind?

Don’t worry….it’s just dry eyes and dry mouth! Look at Venus Williams….she has it and she’s winning tennis tournaments. No problem!

Until it is. Seems this idiotic disease likes to attack mucosal membranes in the body. Sounds innocuous enough, until I realized every organ system in the body is comprised of moisture.

If you have an autoimmune disease or know someone who does, you might be aware of the myriad of natural treatments for these diseases. Try the AIP diet and cure your Hashimoto’s thyroiditis! Acupuncture and meditation can alleviate rheumatoid arthritis! Fish oil and vitamin D reverse multiple sclerosis! DHEA can relieve pain and build muscle! The power of meditation and yoga can renew your mind and vanquish disease! Eating more dump cakes can cure headaches and relieve vaginal itching! Ok, busted….yeah, I totally made that one up.

I’ve tried or am trying them all. I’ve had doctors tell me to ‘educate myself’ and then get huffy when I ask a question about treatment. I’ve been told countless times that I am either too sick, or too well to receive various treatments. Do I meditate regularly? Am I a nervous person? Am I depressed? Am I eating enough protein? Do I eat enough vegetables? Do I exercise? Am I avoiding coffee/caffeine and processed foods and solely munching cardboard and kale? Yes, yes and yes!

I’m grateful for my talented doctors and their genuinely great intentions. They want to help and heal. I’m so glad earnest friends care enough to let me know of new supplements and helpful websites. My lowest point came last week when I was  grasping at straws  looking for help on the foundation site for my newest ailment. The National Suicide Prevention Hotline number was prominently displayed. ***sigh***  That’s when I experienced it…..the dry cry. Sjogren’s leaves me with no moisture for producing tears. Preserves my makeup, I guess.

Having some tests and procedures performed this week so maybe docs can get a better picture of what is troubling me. I’m grateful to be living in this miraculous day and age and I’m praying for some answers and assistance. I believe God will provide a way to live with Sjogren’s

Here’s the marble-idea bouncing in the pinball of my mind and rubbing it raw. The only thing worse than living with autoimmune disease is living with my disease and being told that somehow my actions/inactions or my supremely rare form of craziness caused it. I’m calling bullshit on that. We ALL know I’m the good kind of crazy!

napoleon dynamite

It’s Sunday. Whatever weighs us down and causes our breath to shorten today and in the weeks ahead, whatever autoimmune disease, loss, cancer, grief, COPD, diabetes, or mental illness….whatever causes us to wet or dry cry, we can lay it down at the feet of Jesus right now and feel his strong arms embrace us. We will find our way through this crazy maze of life. Are your shoulders lifting? Mine, too.

 

christmas cactus
My Christmas cactus is blooming. It appropriately waited until after Halloween. Sign of good things to come.

 

 

I guaran-damn-tee He adores your unique martini of crazy. I like you, too.

Shaken, not stirred love to all.

 

Puddles Pity Party

Do you ever watch America’s Got Talent? After a particularly trying day…a day in which I struggled with pain, doctor’s offices, medications, my freakin’ eyes and ever-changing vision, I lumbered exhaustedly into my awaiting, comfy bed and mindlessly flipped on the boob tube. Didn’t matter what was on. I was done. Calgon take me away.

Suddenly, but slowly HE shuffled on stage.

puddles-pity-party-americas-got-talent

With shoulders stooped and a wrinkly-unkempt costume, this mute clown act was a sure-fire candidate for the giant X-buzzer. “Good luck, Puddles!”

The controlled baritone began quietly. I immediately recognized he was singing the Sia song, Chandelier. I knowingly chuckled and mocked the television from the fluffy bed.

It’s been DONE, Puddles! This song is cliché!

Can’t feel anything, when will I learn. I push it down, push it down

Ok, maybe this sad clown can sing a little. So what?!

1, 2, 3, 1, 2, 3 drink. 1, 2, 3, 1 ,2 ,3 drink

Hey Puddles! Why don’t you bring me a stiff drink about now? Ready to forget the day I just experienced.

I’m gonna swing from the chandelier, from the chandel-LIER!!

I’m feeling your pain, Puddles. You’re so pitifully glum and your full-throated and melancholy baritone ain’t bad.

I’m gonna fly like a bird through the night, feel my tears as they dry.

Where’s the Kleenex? Where is it!?

I’m gonna live like tomorrow doesn’t exist…..cause I’m just holding on for tonight.

Damn you, Puddles!! This ugly cry is on YOU!!

You probably know the end of this story. He received 4 ‘yesses’ from the judges and the crowd adored him. Of all the spectacular acts appearing on AGT…..death-defying stuntmen….leaving-you-breathless magic acts…..auditorium-filling opera voices…..why did folks respond to Puddles? Why did cynical-I like Puddles?

Because some days are hard. Some days are sad. I’m not clinically depressed. I’m counting my blessings. I’m staying on the sunny side. I have lots of fun things on my plate. I have a fantastic family and wonderful friends. But some days, when I’m struggling for relief from this stupid disease (It’s called Sjogren’s Syndrome, and it’s ridiculous), when I feel my own body betraying me, when the meds aren’t relieving the pain, when I feel the mist from this fearfully-approaching, slow-rolling disaster of a tsunami…..these are the days I totally relate to Puddles.

It’s OK to have a sad day. You have them, too. Went to a funeral yesterday and was struck by the lyric, ‘Sometimes I’m up, sometimes I’m down…but still my soul is heavenly bound’. It was a terrible day for my friends. God bless them.

Hope your weekend is brimming with fun and glad things. But, maybe that’s not your reality today. That’s OK. I get it and so does Puddles.

Heavenly-bound love to all.

P.S.-I’m preparing for a grand adventure. Something amazing that God just threw in my lap. I’m a chronic over-sharer so get ready for some blogs describing my journey. Info to follow soon. xo