if I was your cell phone

I’m pretty sure you’d be demanding a refund. After dropping your phone, you noticed some glitches and they’re making you spew expletives.  *&+##*!! How could a gentle doink produce so many problems? Didn’t you just dress it in the newest and sportiest camo Ballistic cover?!

After being diagnosed with a stress fracture in September, my foot was put in a boot and I was told to be non weight bearing. I used a sporty scooter to ambulate. Problem was…..the foot became more and more painful. It wasn’t healing. One day I noticed my entire right leg was bright red and my foot was swollen and icy cold. Water droplets from the shower were like needles piercing my skin. After being lectured by the podiatrist for 4 months I was being overactive and continuing to injure my foot, he finally diagnosed me with Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy CRPS/RSD. A condition so nice they named it twice. “Whatever you do, don’t Google it. You need an appointment with a pain clinic”. I Googled it. My nervous system is shot. No cure. Your phones’ motherboard is no bueno.

You’ve dutifully changed the battery, but your phone either doesn’t work or it pursues a devious purpose all its’ own. When you call your love-interest, it insists on calling your minister. 50 times! That’s when you take the battery out and stomp it. When you get the new battery installed….and the phone is blessedly working….the first received call is from your pastor. “Are you OK?! I’ve been getting calls from you ALL DAY!”

CRPS causes a myriad of unusual symptoms. A pain in the hip, a twinge in the knee, a muscle sprain in the back. Your toenails/fingernails take on a ridge-y yellow, thick cast and even seem to quit growing. Your hair falls out. (I’ve taken to wearing a weave….that can be a stand-alone blog post)

 

hairweave
The fabulous Johnny Plant making it look like I have thick, glossy hair!

 

 

The worst symptom for me is the speeding freight train of full-body small fiber neuropathy. Imagine a pitcher of ice-cold water being slowly poured over your head. The frigid water begins meandering down your spine. It picks up speed as it grips your arms all the way to your blue fingertips. It completes the journey as it trickles down your legs and pools at your fragile feet. No cure….just gabapentin or lyrica to try to ease symptoms.

 

lyricainfo
reading the lyrica side-effects info

 

 

Oh….and of course….a good dose of antidepressant. Gotta get more serotonin in the brain! On bad days the frigid water over my nerves is incessant and makes me upset, confused and grumpy. On good days, I feel like my feet and hands are periodically held over a smoldering campfire. S’mores, anyone?

crpspain

Your dropped phone doesn’t play videos very well now, either. Oh….you can see them, but sometimes they blur and the sound is crackly. So much for your Netflix subscription and your THE CROWN addiction.

I’m grateful for my sight and I take special care of my eyes because of the problems from Sjogren’s Syndrome. But sometimes I wonder whose glasses I’m wearing. Details aren’t always crisp and clear. My hearing seems to be OK, but there’s been this constant high-pitched screeching in both my ears. Well that is, until last night. Told the Texan I woke up several times in the night thinking the ceiling fan motor was on the fritz as it had developed an annoying, rhythmic whirring and whooshing sound. Problem is, when I turned the fan off the annoying whirring, whooshing sound is now being produced in my right ear. Hey….I can hear it now! We don’t need a new ceiling fan, but you desperately need a new phone.

Sometimes your bestie complains that your calls are dropped. She states she can hear your voice through the microphone, but sometimes the sound is muddled.

I used to sing quite a bit. I suppose it’s natural to lose your voice as you age, but my voice is ‘like a box of chok-lits….you never know…….’ Yeah right. Blah, blah. I still try to offer my muddled and misunderstood voice to folks at the area nursing/veteran’s homes on Monday mornings with my senior choir from church. Nursing home residents mainly only care if you wear a smile and offer a warm hug and handshake. I can’t count on the quality of my voice, but I’m an enthusiastic hugger.

Finally, let’s explore the camera function of the dropped phone. Believe it or not, it takes pretty decent photos. You enjoy the editing choices, as well. A newer model phone might have a slightly bigger sensor but you’re pretty satisfied. Even though most of the functions of the phone are unreliable, the camera is still working pretty well. How about that?

I’ve enjoyed taking photos with my new camera (Sony
RX10m4….another whole blog post) every evening. I go out just before sundown to check on horses and look for photo opportunities.

 

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the common killdeer

 

 

The wiener dog waddles along and helps me with equipment. She’s really good at sniffing out possible subject matter, too.

 

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a recent hawk sighting

 

I’ve become the John Muir of the great West Texas mesquite forest or the Thoreau of the playa lakes. No detail is too mundane during the golden hour. I’m officially obsessed. I can hear the birds over the ringing and swooshing and I can still amble with my CRPS leg. Not too shabby. The scooter, wheelchair and walker are in the attic.

 

birdatsunset
An example of Muir-ing and Thoreau-ing on my golden hour photo tour

 

Thanks for hangin’ in with the phone analogy. I’ve been thinking of how to describe what is going on with me without being pessimistic or ‘poor me’. I’ve been having some great days and blogging and oversharing help me laugh at these dumb chronic diseases. The pain doc has been my godsend. She tries to keep me going. I’m probably not the person you want to engage in conversation about the opioid crisis or legalized marijuana. More blog post subject matter? Maybe so.

Know you are coping with your own issues. Keep laughing and don’t fall into a hole while looking at your cellphone.

Ernestine….’one ring-y dingy…two ring-y dingy’ love to all.

 

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