Blog Archives

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.

If your body is a boombox, and the nervous system is music…

music-1

Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.

giphy

When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!

When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.

giphy1

A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly. 

When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.

0205-boeing

The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.

Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.

giphy2

Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.

Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.

That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!

giphy3

Author Interview & Book Giveaway! But God, wouldn’t I be more useful to You if I were Healthy?

Thank you, Esther Smith for joining us to discuss your brand new book, “But God, wouldn’t I be more useful to you if I were healthy?” Congratulations on being Amazon’s #1 hot new release in Christian Counseling and Recovery in your first week as a published author! Let’s jump in and talk more about your book!
But God wouldn't I be more useful to you if I were healthy Abodyofhope Interview with Author Esther Smith

1.    Did you do anything special to celebrate the release of your first book? ~or~ How did you reward yourself when you completed writing “But God, wouldn’t I be more useful to you if I were healthy?”

The night my book was released I celebrated with dark chocolate and a glass of red wine. My favorite indulgence. I am hoping to get out to my favorite restaurant this month, and that will definitely be a part of the celebration. To me celebration equals all of my favorite foods!

2.    Aside from writing, how do you enjoy spending your free time? (hobbies/activities)

I have had a hard time coming up with hobbies I enjoy since chronic pain became a part of my life, which is one of the reasons I turned to writing in my free time. But, I do enjoy reading, lying out at the local pool, and cooking delicious recipes.

3.    How would you describe your personal writing process? (Are you research-driven, methodical, intuitive, spiritually motivated, etc. Please explain).

 For me, writing typically looks like sitting down with an empty head and writing about a topic that is important to me without much prior thought. Oftentimes, I don’t know what I think about a particular topic until I put it into words on paper. It is the act of typing and writing freely without restraint that brings me to my best ideas. Then I come back later with research, additional stories, and more attention to detail. Those final changes are important, but it is the original brainstorming that gives life to my words.

4.    Thus far, what is your favorite aspect of becoming a published author? (designing the cover of your book, the writing process itself, doing interviews like these, etc.)

 I have loved hearing feedback from readers. It is the best feeling in the world when someone tells me that my book helped them in some way or that they were challenged to think differently by something that I wrote.

What is your least favorite aspect of becoming a published author? (the editing process, marketing, doing interviews like these, etc.)

I greatly dislike wearing all of the hats in the publishing process. I was not able to pay for help for any part of my book, so I edited it myself, though I am far from an editor. I also designed the book cover, though design is not my strong point. I would much prefer to focus on my strengths and get help with the rest. 

5.    “Resting as an act of faith” is one part of your book I felt was particularly inspired, and is wisdom that both well and chronically ill individuals can benefit from. Can you explain what in your own life lead you to write about resting by faith?  

For so long I tried to maintain the same life I had always lived even though chronic pain made this difficult. I became burned out, and my health started to regress because I was doing more than my body could handle. I maintained all my responsibilities because I felt guilty about giving them up. But I finally realized that letting go of what was physically harmful to my body was not something to feel guilty about. I realized that I was not stewarding my body well, and that being faithful with the body I had been given meant letting go of things that were good but harmful to me. It was a freeing realization and allowed me to better serve in the areas that I didn’t give up.

6.    One of your readers, Ginny asks: Did you have any hesitation in sharing the personal thoughts expressed in your book? (she adds that she can’t wait for your next book!)

Yes! My book was more personal than much of my blog. I poured out some of my deepest fears and failures. Releasing the book left me feeling so vulnerable. But hearing readers say that they could relate helped a lot. It all felt worth it in the end.

7.    Blog follower, Max asks: What was your greatest challenge in writing this book?

 
 For a long time, I had the basis of good material and important points that I wanted to convey, but I didn’t know how to make it interesting. Like I mentioned before, I did have hesitation about sharing personal thoughts and stories, so I left those out at first. As I read through my material and shared it with a few close friends, I could tell that the material was dry. Perhaps I was making good points, but what good was that if no one wanted to read it in the end? My greatest challenge was growing in my ability to write content that had solid ideas conveyed through interesting stories.

8.    Because I follow your blog LifeinSlowMotionblog.com, I know that you live with chronic pain. How has Chronic Pain influenced you or inspired you to write more often, or has it?

Before chronic pain, I would not have called myself a writer. It was chronic pain that gave me something important to write about. As I looked for answers to my own questions, I found limited resources on chronic pain from a Christian perspective. Many of the resources I did find were either lacking in depth or didn’t seem to understand the actual experience of chronic pain. As both a Christian counselor and an individual with chronic pain, I felt able to address the topic with both depth and insight. If not me, who else would do it? That is what led me to writing.

9. “Giving out of a poverty of health” was one of my favorite pieces of wisdom you shared in your book. Can you give a brief example (or explanation) of giving from a poverty of health?

 At one point my health regressed to where I could only work at my job as a counselor 2-4 hours a week. And even that felt almost impossible to maintain. I would go in every Wednesday to see as few as one or two counselees and then drag myself home. It felt ridiculous to work so little, and I seriously considered quitting my job. I am so glad I didn’t. My one or two counselees mattered. I may not have counseled a great number of individuals, but I did my best with the few I had. 

10.    Can you give us a hint of the focus of your next book?

 I am going back and forth between a few different ideas. The next book in the Chronic Pain and the Christian Life series may be about mourning and grief in the context of pain and illness. Or, it may be about communicating our pain and relationships with others. I also want to write about the shame of chronic pain at some point. Too many ideas and too little time! But, I am working towards the next one coming out this fall.
 

~Reader Reviews~
“This is the first book of its kind: reconciling faith with illness.”
“It’s a wonderful book, it is most encouraging and well written. It’s an excellent read for both sufferers of chronic pain and the people who care for them.”
-Nancy Belz
“I love her honesty and the reflection questions that conclude this wonderful book- I found insight- comfort- motivation, and hope in Esther Smith’s sharing. This would be a great book for a small group study in person or online!”
-Ginny Law

How to win a free signed copy or e-book?
To participate in the random book give-away drawing, in the comments section below, let us know:
1. Where you found the link to this interview
2. Tell us where on social media you are sharing this link
I will contact the winner Friday, Aug. 5th! Good luck, and thank you for reading!

 

But God, Wouldn’t I be More Useful to You if I Were Healthy? is Available to purchase on Amazon in paperback or ebook.

The Worst Lie in Chronic Illness

audry kawalski dishonest heart

Audri Kawalski Dishonest Heart

As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives will some day be of use. I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!

I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.

We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My only peace is in God, a relationship which has grown inside of my own tsunami.

This is a message I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again. This is my pride speaking!

In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?

The next time someone reminds you that all the pain you are battling will be worth something some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness isn’t a waste.

I don’t believe we must wait until we are perfect for our lives to have value. If that’s true, then we will all be waiting forever! Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.

It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.

We undervalue the quiet connections, asking others how they are and listening in return, sending a note by mail to a struggling friend, or letting someone know they have been in your prayers. Society does not measure these acts as successes, but what if you redefine success? You may have very little energy to spare, but what you have to share is precious.

I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing disease?

 

It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.

*******

 

You are Never too Messy to Matter

A Positive Message for your Lying Brain

Praying: Can you hear me now?

Positive Thinking vs. Healthy Coping in chronic illness

What is the difference between positive thinking and healthy coping?

“Keep thinking positively!”

“Keep your chin up!”

“Stay strong!”

These are very common cliche responses we hear from society as individuals with ongoing health difficulties. They aren’t incorrect responses, but when those responding seem to believe this is truly how we handle the horrible pain/illness, terrifying future of further health concerns, and crushing regular losses which all come with long-term illness, then encouraging “positive thinking” alone can have quite a negative fallout.

For example, if one is in severe pain (meaning pain worse than a fracture or pain worse than childbirth, but constant, daily, and indefinite) after years, with treatments only failing, and close friends continue to say, “stay positive” as their only source of inspiration, will those words be uplifting over time? No, the attempt at encouragement over time will add to your feelings of isolation, making you feel increasingly deflated, rather than the intention of making you feel more positive, optimistic, and empowered.

Would you say, “suck it up” to a friend who is grieving over the loss of a parent? I certainly hope not. Essentially, this is the idea surrounding “positive thinking.” The concept that the more we “suck it up,” the better off we will be, and the stronger we are.

PS, Our bodies work exactly the opposite of this construct.

The more we avoid pain, the more we distract ourselves from our true emotions (not negative emotions, but real emotions), the more likely our bodies are to feel the stress fallout and rage against us. One with a chronic disease would do well to minimize stress; we know this from immense research (and I can tell you this from my own personal research on chronic pain and chronic illness!).

Minimizing stress is not equal to avoiding difficult emotions or distracting from pain. We have to face our pain and emotions, recognize them, meet them, and accompany them through our lives. They won’t allow us to abandon them, and we know that trying to do so only causes added difficulty down the road.

In Positive Thinking, saying “sure, I’m doing fine” may make others more comfortable temporarily, but it is not necessarily “healthy” for you or for the relationship. Positive Thinking encourages us to become more closed off, in turn others also allow more distance to grow until the relationship diminishes. They realize everything is far from “fine” but both take part in a ritual of pretending everything is wonderful because it’s far more comfortable than confronting the reality.

“Healthy coping… differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.”25 “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping.”  Quote from a study in -Emotional Demensions of Chronic Disease

So often during the course of chronic disease, we have to make choices between the temporary comfort of others, and protecting our own welfare. Regularly, our bodies make that decision for us and force us to miss out. Especially then, healthy coping is paramount! It helps us re-gain some footing again. The openness in healthy coping encourages sharing, allowing others around you to understand where you are, what happened in the situation, how they might play a role in being there for you, and how you can be there for them. It lets others know you aren’t too fragile to listen to them and what they are going through, either. Most likely, those around you are feeling helpless, and would like to be there for you, but don’t know how- or how to ask. Being specific in our needs can help us find our own voice, and being more open also can help others who care about us join in on our “support team.”

Fair warning, most will not know how to respond appropriately, but you may be surprised who is game to see how they can be there for you in big or small ways. In being more open, you may also find that your example sets off a chain reaction in others to become more open with you in how they are doing as well. Healthy coping is so much more contagious than positive thinking, because it encourages support, connection, and community!

Isn’t positive thinking the same as optimism? No. Optimism has more to do with responsibility, letting go of guilt, and looking to the past, present and future without seeing yourself as a burden. I recommend reading the book, Learned Optimism by Martin Seligman.

Healthy Coping differs from Positive Thinking in that healthy coping requires us to lean into our feelings- both physically and mentally. Checking in with ourselves periodically, and then making minor adjustments to our lives to course correct for better balance. This may mean you need more rest, more exercise, more time with friends, another visit to a doctor, see a psychologist, open up to a good friend, eat differently, spend more time focused on your spiritual life, take better care of yourself, etc. Chronic illness requires us to make these adjustments frequently instead of thinking everything is going to work itself out until the ignored symptoms or stress build up. Healthy Coping may be the more deliberate, mindful path, but it is the path of self care instead of conveying a false smile.

To start making these adjustments, we can ask, “How are you?” instead of “Are you ok?” A yes or no question forces us to choose only negative or positive, however, healthy coping encourages others to share and touch base with one another and ourselves- this is how support and compassion are built. We don’t have to choose sides in healthy coping. Try not to think of your days as being good or bad, black or white, suffering or overcoming, but instead- working to find balance every day, always learning from your body and those around you, and doing the best you can now, in this moment.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/

 

 

 

Opioid Tax: Letter to my state representative

Dear State Representative,

Myself and my family are very excited about all of the things you are doing to support those with disabilities. My father heard you speak on the issues of pain medication and addiction, and trying to find common ground so both pain diseases and addiction disease can be treated simultaneously. That is a stance we in the chronic pain community are very excited to hear and support you in that!

In case you did not know about this newly proposed opioid tax, I wanted to give you a little information.
It is proposed that opioid pain medication will be taxed one cent per milligram to fund treatments for addiction.

As you can imagine, those with chronic pain diseases like Lupus, Multiple Sclerosis, CRPS/RSD, Fibromyalgia, or post-cancer pain would be paying for addiction treatments while those with addiction will just buy their drugs illegally instead of paying a raised price from the pharmacy.

Because this tax proposed is “per milligram,”  those suffering with the most severe, most debilitating cases of degenerative neurological pain will likely have the most un-affordable pharmaceutical pain management care, as our doses are typically higher, as you might imagine.

As I am a newly single woman, more recently on disability,  I know that the government works hard to keep drug prices low for those with disabilities. A tax will only make pain medication more un-affordable for those who are spending all of their funds on medical care as is. If this tax is passed on pain medication, it will begin a precedent to tax other RX drugs. It’s one cent now, but it won’t stop there.

Since the CDC’s federal guidelines on opioid control, chronic pain patients are struggling to find pain management care with good pain doctors who are not afraid to treat us. Deaths and overdoses continue to rise. Deaths of people in pain, who are without treatment, and deaths from those who are addicts, continuing to overdose. The guidelines do not work! The tax will not work either.

Again, pain patients are being forced to pay for a disease (addiction) which is not our own. The tax would exclude hospice patients, but what about pain patients who are bedbound like myself? What about those of us who have tried every treatment available and medication therapy is the only option that doesn’t worsen our conditions? What about those trying to maintain a somewhat functional life through chronic pain, and to keep off of permanent disability, taking medications is the only way to continue working and participating in family life?

Medical treatments should never be a punishment. Is this a “sin” tax? Am I sinning? Why should I be ashamed of having an illness I didn’t choose? I am alive in part because of my medications, and so are many, many people! That is nothing to be ashamed of.

Will diabetic medications be taxed to help treat cancer? Maybe Methadone, Suboxone, and Narcan (addiction medications) could be taxed to pay for chronic pain treatment facilities! We are certainly in need of those.

Thank you for using your platform to speak for people like myself.

Please do write your representative today, so a ludicrous tax like this would never get passed. No time to waste!

http://www.cnn.com/2016/05/03/politics/hillary-clinton-west-virginia-opioids/

http://www.painnewsnetwork.org/stories/2016/6/2/senators-propose-tax-on-opioid-pain-meds

Cure Worship, Illness Gratitude, & Finding the balance between

To be thankful while you are suffering is one thing, but to be thankful for suffering….

Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.

It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.

 

I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.

Again, these are extreme statements, but thought provoking and inspiring nonetheless!

Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.

Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.

When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.

I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes. 

I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.

*****

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5

 

I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10

 

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18

 

When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19

No Spoon for you! Graphic

No Spoon for you

It’s “Wordless Wednesday” again, and here I am cheating (how can I resist you, words?).

If you’re confused about the spoon reference, those of us with chronic illness measure our energy with “spoons” ( See more here on: 10,000 Spoons, If Only: Why the chronically ill love Spoons). If life were the Soup Nazi from Seinfeld, this month, he would be yelling out his classic line at me, chronic illness style: “No Spoon for you!”

Not even one??

Harsh man!

I hope you’ll have better luck.

“NEXT!”

 

10 insights on life: Awareness through ME

Today, May 12th is Chronic Fatigue Syndrome (ME/SEID) and Fibromyalgia World Awareness Day. This blogger @ Tips for ME discusses the mysteries of ME/CFS. Particularly interesting to me is the “Canary” or sensitivities aspect, which after 5 years, my doctors still haven’t been able to understand why I can hardly tolerate my own voice, sounds, lights, or smells. Chemical sensitivities alone can be such a confining aspect of Chronic Fatigue Syndrome/ME for so many CFS/ME sufferers.

Thank you for checking out a few of these enlightening ME/CFS facts, life wisdom, and helping raise awareness today!

Tips for ME

This ’10 insights’ #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards at the world through the lens of ME. I believe that people with ME (pwme) have useful observations to contribute to society, perhaps a little akin to Old Testament minor prophets. This can be compared to the voices of other marginalised people groups, such as the queer community, the Equal Rights Movement and feminism. Each marginalised group gains different insights on life, related to their specific barriers to inclusion.

Table of Contents

Background Information

1) Dignity is Vital

2) Anything Can Happen at Any Time

3) Listen to Canaries

4) A Rose by a Different Name Does Smell Sweeter

5) The Authority on Your Body is You

6) Access to Health Requires Self-Reliance

7) Very Little Knowledge is Truly Known

8) Learn your Limits and Take a Step Back

9) Money Enables Quality of Life

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20 Year Anniversary by Logan Woods: An RSD hope story

It has been Twenty years since RSD crashed into my life and it has been quite the ride. Some moments I have wanted to be over before they happen. Other moments I held onto for dear life because they were all that sustained me through the hours and days of pure physical and psychological torture. At times I was able to be more normal like many of my peers. Other times I behaved and felt as if I were on my death bed. However, if I had the choice to do this all over again there would be nothing that I would ever change. I am not saying I like being sick but all of the gifts that it has helped me to find out about myself in a hurry compared to my “normal” peers has been truly priceless.  I will tell a brief side of my tale that has led me to find peace with RSD and my life.

20 Year Anniversary by guest writer, Logan Woods

In February, 1996 I was a normal 15 year old girl who really did not want to go to the dentist, and I got out of it by going to the ER instead. I knelt down and felt like I broke my kneecap in half (I did not). So my mother and brother took me to the local ER to have my knee looked at (I had to be carried, it hurt so bad). They took and X-ray of it and found out that I had somehow knelt on a needle that was now lodged in my lower thigh muscle. They ended up sending me to a different doctor to have surgery on my knee as they could not get it out. The surgery doctor’s next appointment would not be for five days which they thought would give the needle time to work its way up out of the thigh muscle. It worked its way further into the muscle instead, so on that day of the surgery, they took four times as long as they thought they had planned for. After the surgery, the site that they opened up to remove the needle was healing just fine, no complications, no unusual pain, but then on the eighth day after surgery at 4:30, sometime in the afternoon, RSD came into my life. So far has not left, although I keep insisting that she can be on her way now.

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So, mid teen years were now controlled by not me, my school, or my mom, but by RSD, and I am just learning how to gain control over the elusive mistress. She swept into my life limiting my ability to go to normal school and participate in normal activities, although looking back at it, she might have saved me from getting too wild and crazy. I hated my ninth grade year before RSD came in the picture but it became even more troubled after. I ended up dropping out of ninth grade because I could not get out of bed due to the intense pain my leg.

The doctors I went to told me was in my head even though my mom kept telling the doctors my leg kept changing colors to this purple splotchy looking thing. My mom believed me but by then it was such a trouble to handle getting told over and over again there is nothing wrong with your leg. So, I gave up going to the doctors and started living with the pain.

I enrolled into a different high school as we had moved during the summer into a new school district. Tenth grade year was magical with the friends that I made and the activities I enrolled in at school. School was great, home was rough, but was do-able. The pain never went away from my knee and I learned how to distance myself from the pain and focus on my life, but there were times that the pain would break past my threshold and I was no longer able to hide it from people.

Eleventh grade I enrolled in dance class at my school and thought that if I was going to “try” to learn to dance I might as well try once more to figure out why my knee still hurt after 18 months of the initial RSD onset. I ended up seeing a doctor whose specialty was RSD though we did not know that at the time. After the initial meeting, within four hours of meeting this doctor, I was officially diagnosed with RSD in my left knee. I thought, okay this can go away with one of these treatments that the doctor wanted us to start trying right away; it was one tough year. So, treatments start, the school year starts, and everything is going ok. I do not know what to tell my friends so I do not tell them a whole lot. They just find me funny that I would become a log when we would have sleepovers; they would use me as a table to put the pizza on.

 I started missing more school days but I managed to keep up until the end of that year. I was desperate to have a job, so even though I was not that functional, I got a job for 9 months. It was fun getting the paycheck, but work was fast food, not rocket science. In twelfth grade I ended up having a teacher from my school come to my home to give me school work and tests so that I could graduate with my class, which I barely managed to do.

The pain and treatments that were supposed to help just left me isolated from the world, partly by my choosing and partly because I could not act normal with the raging fire in me all the time, so I turned inward.

I had a boyfriend I loved very much but as time went by we were not a compatible match for each other, and RSD became more of a main focus in my life which I am not so sure that was a good thing.

College time came and I just knew I had to go to college for all those wonderful fun 80’s movies that glamorized colleges, and besides, how was I going to work being sick all the time? I took one class a semester for 8 years after high school. I loved my college years and I made some off-color choices, but hey, I thought isn’t it in college that I can get away with shit? My grades were up and down because of the pain but it gave me the experience of a lifetime- taking my time to learn what I wanted to and figuring out what thrilled me to fight for more than just surviving this illness.

I was figuring out that I had found a passion to learn how to thrive. I was only identifying myself at that time as the girl with RSD, nothing more. It took me years to figure out how to stop identifying myself as that sick RSD woman.

I did, by my hairy son Randy (dog) and my hairy son Orion (cat), my hairy son Siries (cat), and through my hairy sister (dog) who in one form or another was sick. So, I started researching about pet health and focused on pet nutrition as it was something that I could do to affect their health. The love for business, invention, and innovation became my zest for life and I helped me to handle the illness.

It took years to get here- where I can see the future I want for myself, and know that I can have it. I would have what we call the “Lorado” me acting like a tornado being destructive against myself, my possessions and the people I loved. I was unable to control my emotions, and I would get really upset over anything, but really, I was just upset because I was miserable and extremely unhappy.

I was tired of being sick all the time (not like we ever get the choice), I was tired of feeling like the only life I might have is through other people, and tired of myself. So, I had to make a decision if I was going to “stay” I had to change me or more precisely change my thinking.

I read books by people who help people handle their moments in life. I started asking myself what I really wanted in life with or without RSD.  I took time to learn to know what I wanted and learned how to stop hating myself and RSD. I would pick a part of myself to like about me and over time I learned to love me and those around me more profoundly and deeply. RSD was no longer my calling card or any way to describe myself. I became Logan, just Logan.

Today, at twenty years, two months, and twenty days into RSD it helps make me, me.

I am becoming a successful business woman by helping to start up a company with my mom and brother, www.Blindsofbeauty.com the one and only company that sells and makes vertical blind slip covers. This is just one of the many companies I will be involved with creating and running. Believe it or not, it is because of RSD that Blinds of Beauty exists, my mom invented vertical blind slip covers as a way to cover the vertical slats that would leave my room even when they were closed blazing hot while I was going through blocks and treatment for the RSD and we were prohibited on our apartment lease from putting holes in the walls. It took a few years (15 years) to start the vertical blind slipcover company but it has been well worth the wait. Blinds of Beauty is giving me the job as the CFO among other responsibilities.  Life is pretty great for me now; I just had to find me.

It has been a work in progress to live my life with RSD, ignoring it to the best of my abilities (not always wise), loving the hairy children I have, giving life my whole heart, following my dreams, and having fun. I plan to run companies, adopt a few non-hairy children, have a wonderful partner, live my life on my own terms, enjoy the great moments and breathe through the rough moments.

*****

This week is the launch of Logan’s new website for her company, Blinds of Beauty. Please check it out. It is truly unique! I’m so honored to share Logan’s story here. She is one of the first people with RSD I “met” online over a decade ago, and we have been friends ever since. She is a beautiful person, inside and out, and she deserves every good thing this life has to offer!

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