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Doing ‘Well’ when You are Chronically Ill

This chronic illness sufferer hits the nail on the head. This is life for so many of us, on our very best days sometimes even the hope of “what if” gets us into trouble. We may live with different conditions, but we face the same battles. I hope others are comforted reading this, being ensured they are not alone.
I hope you are “doing well.”

Holding Patterns and High Tea

My health has been doing relatively well lately. That is to say, I am not in an illness or pain flare currently. But what does that even mean for me and others with chronic health or pain conditions?

For me, it means I may feel “ok” as long as I am sitting and doing quiet non physical things. It also means that simple activities like sitting up from laying down, standing up, or walking from one room to another doesn’t give me an asthma attack.

However even when my baseline health is slightly improved I still have to be careful. Just because I can walk slowly doesn’t mean that cleaning sprees or even small organizational tasks won’t cause me asthma attacks and pain flares. I know at this point that keeping a decent base line of health, that allows me any sort of quality of life requires I not push…

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Chronic Illness and Surrender

Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.

It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.

When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans. 

My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch. 

No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals. 

I was in control

Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path


Surrender is a difficult topic or act for most of us to comprehend.

I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?

Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course. 

“Do you want to do this yourself?” a nurse once snapped at me. 

Oops, I thought. But then…I knew my answer would have been, “yes.”

Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind? 

Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.

They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.” 

Illness can become your life if survival becomes your new goal

There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes. 

Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.

I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness. 

The world tells me to push, to fight, to Just. Keep. Going.

But I learn quickly that there is no push  in this game. Only tricks, and cheats, and strategy. 

It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.

Illness owns my body. 

There is no free will flesh. There is no- push for one more minute.  There is no- if I just take this pill.

This body has been exchanged, kidnapped, swapped for a rag doll.

Once, asking for help seemed an impossible exception only made in the most dire of circumstances. 

Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this? 

What better picture of grace?

Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray. 

Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.

My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.

God is in control, they say. They say it like an empty cliche. 

Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior. 

In this broken body, I see freedom.

(Re-posted from 2015)

Sliding Doors: An exercise in “What If”

“Pieces” self portrait

Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another. 

I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan. 

This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it. 

imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps. 

I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way. 

It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe. 

In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids. 

Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s. 

There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades. 

I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”. 


The door slides again. I step back through the wormhole. 
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.

This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling. 

This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone. 

There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life. 

I’m not entitled to any other existence. 

This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future. 

It’s not over yet.

Self Portrait Chronic Pain

“Life on Fire”

These are 2 self portraits expressing the neurological and autoimmune disease RSD, also known as Complex Regional Pain Syndrome.

“Outer Smile”

There are those who wonder why those of us confined by pain and illness choose to continue a life suffering when all has been done, and there is not much more to do than to try to make us as comfortable as possible.

Most will never know as much torture as those who live with chronic neurological disease. But to be miserable, to be a victim in your spirit, that you must fight with every effort. 

It may take all you have and more, but you are indeed needed in this world. Never, never give up.

Dear friend, never lose faith that your life purpose for being on this earth is so much more powerful than your pain. 

I believe in a loving merciful God who lends strength when we get to the end of ours. 

I fight to survive, to choose life every day when my body begs the opposite. I want to encourage you today to take on your battle in your own life.

Hugs gentle warrior. 


Please share below how you continue to press on despite seemingly insurmountable challenges.

Unseen but Felt

By Brainless Blogger

The thing about an invisible disability is that we can hide it. Mask it. Slap on a façade and pretend. There are many reasons we wear facades. See The Façade. It is a unique feature about invisible illnesses and I do wonder if it makes us more invisible in some ways. People think ‘I saw […]

via Unseen but felt — Brainless Blogger

Liminal

Reblogged from Holding Patterns and High Tea

 

​I’m not doing well right now. I worry about dying, asthma or an infected tooth. I worry about leaving my family alone. I worry about being a burden-dragging people down im so tired of fighting so hard to repeatedly have it come to nothing I worry I’m giving up, burning out, or burning up I […]

via Liminal — Holding Patterns and High Tea

Role of curcumin turmeric in systemic and oral health: An overview

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3633300/

What is Your Purpose?

We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true. 

What if I told you that having a “Life’s Purpose” is a myth. 

We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days. 

Why is this philosophy problematic? 

…Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire. 



Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.

You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life. 

The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit. 

A Life’s Purpose is not the same as a Life of Purpose

We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments. 

Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time. 

Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator. 

I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.  

POTS- What helps. What to AVOID.

HELLO EVERYONE!!!
I have to share this POTS post packed with wisdom, and terrific tools I wish I had known years ago!

itsapotslife

POTS What Helps? 
The contents of this Web page are provided for informational purposes only and should not be used as a substitute for professional medical advice, diagnosis or treatment. Please keep in mind that new treatments are continually emerging and some of the older treatments may rarely be used.

Your physician may prescribe medication to decrease the symptoms of POTS. Doctors admit that treatment can be a challenge and that no single therapy is uniformly successful. Medications that are useful in some patients may have no effect in others. Occasionally medications can worsen symptoms. Medications used to treat POTS include the following:
Anti-arrhythmic drugs, such as disopyramide (norpace), have been used to treat POTS patients. However, studies have shown that some anti-arrhythmic drugs may increase the risk of death, and they are usually used only to treat life-threatening arrhythmias.

Benzodiazepines, such as Clonazepam (klonopin) or alprazolam (xanax)…

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Party Etiquette for a Sassy Spoonie/ Missed Manners

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | Kim Legler

1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”

See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!

2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”

See, you can play this game of witt too. What a wonderful party!

3. Smile
When in doubt, smile.

Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!

So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!

Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.

Merry Christmas, happy holidays!

This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
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