Burning Thoughts

Raw, unapologetically honest accounts of my experiences living with CRPS expressed through poetry, short stories and sentiments. If it brings me immense joy, makes me sad or ticks me off...I write about whatever sparks something in me. These are my Burning Thoughts...

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Baby’s Declaration:

I’m Tired of the Pain!

For the last couple of months, Baby has been making it very clear that she is fed up with CRPS. She constantly says, “I’m tired of the pain! I am so TIRED of THE PAIN!!!” Baby yells it with emphasis on those words. I mean she says it like she has CRPS. It goes to show that this terrible disease effects everyone who truly cares about you. Maybe someone has told Baby that there can be power in visualization and vocalization. It’s definitely worth trying... Speak it into existence, Baby! Speak it into existence.

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New Dance Craze

The Seize

Sunday, my body was apparently invited to a party that I knew nothing about. I was lying on the couch trying to go to sleep and my lips began jumping all around. Oh yeah! Then my arm joined in on the fun. But of course my leg was not to be outdone! All that was missing was the music, but I’m sure my brain filled in as the DJ. It does whatever it wants to anyway. I got no sleep. Zero, zilch, nada! Party over here!!!

So this is how you do The Seize...

Move your lips in and out, side to side. Keep your arm by your side and slightly twist back and forth. Then lift your foot about an inch off the ground and shake your leg gently.

That’s all it takes folks! I don’t even have to try. Lucky me!

[disabilityhealth]

When every little thing is exhausting

[Gif of a baby in a onesie sneezing and then falling over.]

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I feel like passing out right now!

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Crack!

Don’t Break the Mug!

So this morning’s challenge was getting my coffee. I grabbed my favorite mug trying to use my right hand. No go. I switched over to my left hand and began rinsing my mug out. I had put a little soap in it and needed to rinse a few times. I went to shake out the water left at the bottom and hit the mug on the sink not one, not two, but three times!!! I’ve improved the ability to use my left hand more since I began suffering with CRPS almost four years ago, but clearly there’s a long way to go when it comes to control and coordination. Crack!!!

[thischroniclife]

''What are your symptoms?''

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I know all about this...

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Physical Therapy

AKA: Physical Torture

Has anyone else ever noticed how much physical therapists enjoy their jobs? Think about it. Physical therapists get to torture people, and they also get satisfaction from knowing that they’ve helped those same people. Now isn’t that something? With the way I feel right now (angry, annoyed, exhausted, in pain, etc.), I’d quite enjoy it if I were able to be a physical therapist, too. Yep, that would make me really happy.

[burning-thoughts-blog]

Thankful Sunday

The Little Things

I survived an extra exhausting day yesterday. Before I proceed, let me explain the difference between a normally exhausting day and an extra exhausting day…

Normally Exhausting = Waking up and taking a shower

Extra Exhausting = Waking up, taking a shower and doing anything else

DH normally takes Baby to gymnastics practice on Saturdays, but I went along because we (meaning I) needed to fill out paperwork to register her for summer camp after gymnastics. I used my coat as a cushion, rocking back and forth, side to side and rubbing myself constantly the first half of practice. I stood up and did stretching of sorts the second half. I can only imagine the other parents thinking “What in the heck is that lady doing?” LOL! I survived.

And then it was off to Baby’s summer camp location. It should have taken all of 10 minutes to fill out the paperwork, but it took me more like forever! I simply can’t write that much with my raggedy hand burning and cramping up on me. Paperwork isn’t DH’s thing. Besides that, I have to use my hand as much as possible or I will lose the ability to use it at all. She’s all registered! I survived again.

I was completely beat when we arrived home and hit the couch. It was time for lunch and I just wanted a Honeycrisp apple but couldn’t peel it after filling out the paperwork. DH peeled and cut one up for me, and I didn’t leave the couch again but for trips to the bathroom. (Totally normal.) On one of my trips back from the bathroom I decided to check the mail. I opened the door and there was my box from Amazon. Cue the music: Ahhhhhh! Cue the lights: Sparkles surrounding the box. Cue Baby: “Is that for me?” she asked. So here’s what I’m thankful for:

3. My comfy new slippers

2. My new moist heating pad

1. Baby’s eagerness to help me with my new cream and heating pad

She told me to lie down on the couch. I showed her where to put the cream, and Baby rubbed it in. After I plugged in the heating pad, Baby laid the pad on me, covered me up with a blanket, kissed my forehead and told me, “Get some rest, sweetie.”

Just what I needed.

[burning-thoughts-blog]

Acceptance

Owning Who You Are

In my post titled Disaster Averted, I referred to my mother and sister as Baby’s stalkers. They were so pleased with their mentions in the post. Lol! Baby’s Nana and T-T are absolutely crazy about her (as they should be) and have no problem admitting that they call us constantly and live for Skyping with her. Their reactions got me to thinking about owning who you are. Obviously, I consider their stalking to be positive behavior, but no matter how big or small the attribute, I love when people truly own who they are, their actions, etc.

As I began writing poetry again after living with CRPS for a couple of years, I wrote about all aspects of my journey. One of the poems that I wrote is about the fighter in me. After writing it, I thought about how much I truly love who I am; I love that part of me. What would I have done without the fortitude to champion myself? It took almost a year for me to be diagnosed. If I hadn’t pushed for answers, going to doctor after doctor after doctor (like 20+), I would not even know the name of my disease. I also don’t know how I would have been able to deal with all of the challenges that I’ve had to face as a result of this illness. I need to be strong; I need to fight! I’m so glad that I did not have to acquire this attribute after the fact. So I’ll just say it: Thank goodness for me! And as a preamble to other poems I will share in the future that reflect the fighter in me, I’m starting from the very beginning and introducing you to my best friend, Ol’ Girl.

Ol’ Girl

I met her early on in life, And if you asked me to describe her One word I would not use is “nice”. She first appeared as a protector of others, But she had my back more than anyone else’s I soon came to discover.

Ol’ Girl is my best friend. Only on her can I always depend. I love her so much because she takes nobody’s shit. On her bad side you never want to get. Her words don’t cut like a knife, They sever like a machete. Ol’ Girl simply won’t stand for anybody messing with me.

She takes up for me when no one else will. You need someone like her when you’re chronically ill. I hate it for people when I see her come. If I were them, I would definitely run. A PSA should be created and distributed throughout the world. All it needs to say is “DON’T MESS WITH OL’ GIRL!”

She sits quietly inside me as I hope the peace will last. But boy when they test me, She wakes in a flash.

Ol’ Girl is my protector. She’s my best friend. She gives it to them straight and doesn’t give a damn who she offends. Oh, I love Ol’ Girl to the moon and back And will throughout eternity, Because I am her And she’s one of the very best parts of me.

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Girl On Fire

A New Meaning

We CRPS female warriors give Alicia Keys’ song “Girl On Fire” a whole new meaning. We’re burning up inside but fighting. Let’s color the world orange and find a cure for this horrific disease!

[burning-thoughts-blog]

Disaster Averted

Spring Break is this month?!

Once again I forgot about something...Spring Break. Ahhh!!! I began to panic. Bleep! Bleep! Bleep! (Yes, I actually say bleep. I’ve come a long way since my sailor days.) Baby and I would not make it through the week. She’d be looking at me lying on the couch and telling me she’s bored. (There’s only so many times that even she would watch Shock Trauma per day.) I’d be lying on the couch even more exhausted than usual from her talking non-stop and running and flipping all over the house. By the end of the week, the house would be a bigger disaster than it already is as a result of Hurricane Baby and my inability to clean up the wreckage she left behind. How could I fix this? 911 emergency!!!

I asked DH how many days he would be able to take off and he said, “I can’t take the whole week. I texted you last week and asked when her spring break is and you never responded.” (It must have been one of those times when I opened one eye, looked at the text and passed back out. Yep.) Thank goodness his comments didn’t end there. DH, being the genius that he is, asked, “Why don’t you see what your mom and sister are doing?” Now why didn’t I think of that?

Baby’s stalkers, I mean Nana and T-T, to the rescue!!! Those stalkers, I mean wonderful ladies, didn’t hesitate one second. Thank goodness they could take off. Baby gets spoiled, and I get to rest. Whew! Disaster averted.

[burning-thoughts-blog]

New Poem for #RareDiseaseDay

Inspiration

I’m inspired To become more than I ever aspired. I believe I’ve been called higher To give this condition a voice. To build awareness now I have no choice.

I’ve always enjoyed being a force behind the scenes. But to step forward and spread the word around is now a need. If I don’t do it, who else will? I want to save someone else the agony of getting no answers When they know they are ill.

I never want anyone to miss the opportunity to possibly recover Because they’re running around in what feels like circles Seeing new doctors over and over. How do we change this if the doctors don’t know? They need to be taught; There’s a need for education. And someone has to remind those who are familiar with this condition That it has MANY different presentations.

To help my fellow survivors beyond driving awareness Within the medical community. To educate their family and friends So that a bigger picture they can see. Maybe to say something that reminds them that they’re not alone – Something that resonates. Or to give them the words they’ve been trying to say.

For so few people to be aware of our plight… Well, I think it’s a crime. No, this condition in itself won’t kill us physically, But as I was recently reminded, Other parts of us can and do die indeed.

I know I’ve mentioned before that for people with CRPS there is a high suicide rate. But it’s an important fact that I feel I must reiterate… and reiterate. I’m going to shout it from the rooftops as loud as can be Until researchers take up our cause like they do For cancer, AIDS, MS and heart disease.

I’m inspired To become more than I ever aspired. I believe I’ve been called higher To give this condition a voice. To build awareness now I have no choice.

[burning-thoughts-blog]

Rare Disease Day

Leap Year?

Ok, I get it. Leap Year comes around every 4 years (not really rare); it’s the only day that doesn’t occur every year. But in choosing a day that only occurs every 4 years, we miss the opportunity to make a big impact every year. Love the concept, hate the reality.

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Where’s the Relief?

Sleep -

All I did this weekend was sleep. I would wake up and couldn’t do anything but will myself back to sleep over and over and over again. I’m suffering with no relief. I only get a reprieve when I can sleep.

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New CRPS Game Show:

Fill in That Blank!

Hello and welcome to the first episode of Fill in That Blank! I'm your host, Burning-Thoughts. Thank you so much for joining me!!!

So here's the premise of the show: I lose the ability to reach my words and either I figure it out by myself, Baby shouts out the answer or I ask someone (typically DH). Easy enough, right?

Now let's get to today's Blank...

In a post yesterday morning I initially wrote:

Opening the ½ gallon milk carton with my right hand to pour the remaining milk into my daughter’s cup...

I read that line over and over again. Something just did not make sense. Milk carton, milk carton...The milk carton doesn't have a cap. What is that called? I just couldn't reach the word.

So I yelled down to DH and said, "Can I ask you a stupid question?"

"Ok..." he replied.

"What do you call the thing that the milk comes in?" I asked.

"What, the jug?" he questioned.

"Yes! That's it. A jug. Thanks!" I said as I went to make the correction.

Well folks, that's the end of our first episode of Fill in That Blank! I hope you enjoyed it and plan tune in again. Until next time, I'm your host Burning-Thoughts.

[burning-thoughts-blog]

The Struggle is Real:

This Morning's Challenges

1. Opening the 1/2 gallon milk jug with my right hand to pour the remaining milk into my daughter's cup - Obviously, the cap had been twisted on and off several times (and I make sure not to tighten it too much), but I still couldn't open it. Much thanks to my left hand for stepping up and taking care of business again!!!

2. Using a spoon to get some of 4-legged baby's food out of the can and mashing it up - Unfortunately, the left hand can't help with this one. Can you say messy?

3. Brushing my teeth - Yes, this is a daily challenge. Gripping the toothbrush and moving my arm to brush is no joke. I've tried brushing with my left hand, but I don't feel like it gets the job done. Besides that, I have to use the right side of my body whenever I can or my limbs will waste away.

4. Taking a shower - Yes, this is another daily challenge. Well, technically I didn't get in the shower until this afternoon, but considering the pain and how exhausted I feel, I can still consider it the morning if I want to!

[burning-thoughts-blog]

TBT...

Asheville, NC Healing Attempt :

Rewind to November 2015... DH and I decided to go to Asheville for a belated 10-year anniversary weekend. I chose Asheville because I had heard that it was a beautiful place, it wasn't a long drive from my mom, who was taking care of Baby and 4-legged Baby for us, and it offered some great healing opportunities.

I booked a room at A Bed of Roses Bed & Breakfast. I chose it not only because it was highly rated and centrally located, but it also had a room available on the first floor (no stairs!). I also booked us for salt therapy and massages at Asheville Salt Cave the first afternoon and a private Jacuzzi tub at Hot Springs Resort and Spa the next afternoon.

There were 5 other people in the salt cave with us. I decided to tuck a salt crystal under my shirt on my shoulder. I put another one in the waistband of my pants on my hip, on top of my knee and on the side of my ankle (all on the right side of my body). I used the techniques I learned at biofeedback therapy to relax my body as much as possible and prayed that the salt would heal me. It was a calm, quiet environment, but the pain remained after the 45-minute session. DH and I both enjoyed our massages as well, but the unyielding pain was still there.

The next day, DH drove us to the Hot Springs Resort. It wasn't the best time to go because it was freezing, but I couldn't pass up the opportunity to immerse myself in the healing water. Once we got into our private Jacuzzi tub, I began praying to my Native American ancestors (yes, I know the running joke that every AA person says they have "Indian" in them, but my maternal grandfather REALLY is Native American). I literally prayed the entire time we were in the Jacuzzi to no avail.

Was I disappointed when we left Asheville unsuccessful? A little, but I didn't go into it with unreasonable expectations. Also, Asheville is really welcoming to those of us with physical disabilities. Handicap parking downtown was abundant and FREE for us!!! Wow! The B&B was lovely and the food was yummy. It was a good little trip that DH and I needed to take us out of our daily environment where the pain lives with us, and I continued my fight against CRPS by trying something new. The journey continues...

[burning-thoughts-blog]

Sharp Pain...

Uncontrollable Reaction:

Baby and I were Skyping with my sister. I was having the normal pains, but then one of those sharp ones snuck up on me again. I jerked forward and yelled out scaring Baby and my sister.

"Mommy, I don't like that you have pain. I don't want you to have any pain," Baby whined.

"I know, Baby. I don't like that I have this pain either, but I'm ok. I'm ok," I assured her.

"But Mommy that scared me. I don't like it when you scare me."

"I know, Baby. It scared me, too," my sister chimed in.

"I'm sorry I scared y'all. I'm ok," I said.

"Don't worry, Mommy. I'll take care of you. Kisses..." Baby said sweetly as she perked up her lips.

Damn the pain, but love the extra kisses.

Baby has her stethoscope on now, and she's giving me shots. Time for bed. Doctors orders!