Surprise! I have toes!

I have been attending Krav Maga consistently and something happened tonight.

You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I did the “soldier’s crawl” as it was supposed to be done,  for a few moments.

This is kind of how I felt when realized my footing was getting better.

 

I tell myself every day that if I keep moving, my range of motion will come back.  I know it will never be what it was before, but there is potential and now realistic hope my range will improve.

I had another revelation: My toes are not useless.  They’re just fused and different, but they are not lost.

I’m encouraged, exhausted and sore.   The good kind of sore.

The “Bromance” of Vanity & My Lungs

I have pulmonary fibrosis with my scleroderma.  I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me.  I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them.  My lungs used to complain, but now they are in compliance.

It used to be really hard to exercise.  Walking across the room took effort.  Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem – sarcoidosis- was identified as the culprit, things got even better.  After years of difficulty breathing, I was finally diagnosed with sarcoidosis.  The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom.  But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell.  This restricted movement of my lungs so they could expand, thus creating difficulty breathing.  Now I am on the right medication to keep those granulmas in check.  Stress does make those granulomas swell, so I also have sedatives handy.  How can I face what I need to do in any situation if I have trouble breathing?  Don’t judge, it works.  I have to be able to breathe or defeats the purpose- of everything.

Now, back to the pulmonary fibrosis:  That’s courtesy of scleroderma.  My lungs are scarring, but I am keeping my lungs working by making them work.  I have a use it or loose it mentality.  Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental.  Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies.  If you tell yourself your dying, that’s true whether we have a positive attitude or not.  We’re all going to die eventually.  Some of us just have an idea how.  And even that’s inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that.  So, can we really control what life throws at us?  For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no.  But we can control how we face them.

So, how am I facing the ongoing progression of my lungs scarring into fibrosis?  I am working to sculpt my ass into perfection.  That’s right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine.  And I don’t mean unhealthy looking either, I want a fine ass I can be proud of.  The side effect:  I am eating healthier- no, I’m not starving myself.  I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday.  Nthing suer complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.

Back in 2005, I stated with deep breathing.  I even wrote a post about how deep breathing is exercise.  This is an updated version.  I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress.  My condition is stable with medication, but I know I need to do more than medication.  Not just for my symptoms, but for my own sanity.

Some of you may not know this, but I have a tendency to be a control freak.  When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them.  I continued to drink and occasionally smoke.  Then, once I quit those, used my energy to point out what I perceived to be everyone else’s problem.   Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane.  (Determination of my sanity is entirely subjective by my own observations.) 

Then came a time when I took a look at what my body is doing and for lack of a better term, freaked the
f**k out.  Then, I remembered the most important thing I learned from The Hitchhiker’s Guide to The Galaxy and stopped panicking.  Reading the book Illusions, by Richard Bach has helped tremendously as well.  My point is, it’s all about perception.

picture of a butt
Everyone needs a goal. This one may be a little vain, but it’s more fun to work for this than to think about keeping lung tissue moving to keep it from hardening. Enjoy the eye candy borrowed from @regretfulmom.

So, the family friendly term for exercising is: I do it for my health.  The truth is, I’m a bit vain and I’m using that to motivate me to exercise.  I want a booty I can bounce a quarter off of (see, vanity isn’t all bad, it helps me breathe.) The “secondary” benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake.  Right now, I just want to look good on the beach.  Because that’s where I want to be:  Living in the now.

 

Krav Maga, Yoga, Scleroderma, Sarcoidosis and Feeling Good

I have returned to Krav Maga Classes.  I kept putting it off because I was so busy, I felt it would be too much.  Boy, was I wrong. I went back to my first class two weeks ago and felt energized and empowered after my class.  I am working to make more time for it, but easing back into it is the best choice for me.  I love how my instructors help me adapt, and do things I never thought possible.     Another thng I like about the school I do attend is their emphasis on self discipline, respect for others and violence as a last resort.  I feel balance balance between my inner warrior and facing the world calmly.

I also do yoga at home using DVD’s.  I plan to  join a local yoga collective and attend classes once my budget is squared away.  Today, I will do a short yoga DVD.  I need to work on m deep breathing.  Not exercising January and February while I moved has made a difference in my lung capacity.  I can’t take those deep breaths.  After evaluation and approval by my doctors to do exercise, I have experienced the ups and downs of not staying consistent.  I don’t just feel the flab.  The muscles in my chest become stiff and restrict the expansion of my lungs.  So, there’s that.  And here I am again back at square three.  Square one was when I could barely walk, so I can move easily, Square 2 was finding things I like to do to exercise.  Now, at Square 3, it’s time to make these activities consistent.  I have such commitment issues, bit I am very optimistic about this one.

Not to mention that if I stick with this I will look fabulous this summer in a bikini top and board shorts!  Yeah, I’ll post pictures in June- maybe to help raise awareness.  If Curvy Girls can get 1.9 million “likes” on Facebook, I can do something with this potentially hot body.  Look, the world is filled with beautiful women of all shapes and sizes.  When I die, I plan to donate parts of my body to scleroderma and sarcoidosis research.  While I’m still here and looking good on the outside, why not use my body to raise awareness?  Look out Curvy Girls!

Have a great day!

For more information about scleroderma and how you can help research for a cure, or raise awareness, here are some helpful links:

The Scleroderma Research Foundation

Bounce to a Cure

Beyond The Mat: Divine Order.  A post form Temecula Yoga Collective’s Blog about how we are all connected.  Excellent post!

Caring Hands Sarcoidosis Network of Michigan

Supportive Patient Communities:

Treatment Diaries

Inspire

Art by Chris Dean, of Life Your Way

See her comics at Totally Random Shuffle

Scleroderma, Sarcoidosis and Box Wine

West Coast Krav Maga

Pain, Scleroderma and Activity

This has to be a quick one today, I have an infusion.

Last night, I had a great Krav Maga class.  I felt very good, but I forget sometimes, that I maintain a regular level of pain.  We’ve all been at the doctor’s office and asked to rate our pain.  My reply is usually, ” 2, but nothing out of the ordinary.”

I don’t quite understand the whole pain scale thing.  I can maintain a conversation while  tears pour out of my eyes.  It may be a learned response or capability because pain is such a part of my life.  I still “mope” about it sometimes and I still have days where I am too angry about my hands to do anything but lay on the couch.

That I am able to do things like yoga and Krav Maga may be rare, but I talk about it because it can be done.  My hands hurt constantly.  There are days the pain is mild and days the pain is worthy of a few choice words and some Vicodin.  I don’t share this with people in my day to day life because it’s not that it’s a non-issue, it’s that I have accepted this as part of stuff that just “is”.  It’s going to exist no matter how much I talk about it.  It’s not going away.  I want it to, but it’s not.  And yes, I ignore suggestion to use things like Dragon Speak.  It’s a great program, but it messes with my thinking.  Probably my own rational form of denial to make my life easier, but I never claim perfection in dealing with this stuff.  I just post what works for me and hope that it helps someone else, in some way, of makes a reader laugh.

I’ll try to be brief with my point, and I hope you will ask questions if I am unclear or if I may have tried something I haven’t mentioned, please ask.  My point is, I’m in pain.  I feel better when I move.  I have found a way to move with my pain, but focus on my activity.  The pain comes up, but in my mind I ask myself, “Is this pain present because I am doing something new that is harmful? Or, is it my normal?”  If it’s my normal, I have my own way of focusing on the task.  If it’s there because I am doing something that creates damage or harms me, even though it may be a regular non-painful task for someone else, I find my own way to complete the task or stop doing it and ask for help.  When I do activities like yoga and Krav Maga, I work with people who are trained to show me ways to adapt.  Ways that I can do an activity and achieve an objective without hurting myself.

So, if you look at your hands in the mirror and find yourself surprised by how messed up they look, like I do every day; don’t forget to finish that thought with, “I’m still here and I can still do things.”  Everyone’s experience with loss is different.  Where I am was not an easy place to get to.  I am fortunate enough to have great mental health care from the Veteran’s Healthcare system.  I hope someday everyone will have access to the great healthcare that I do.  I write because I want people to know it exists.  It was an uphill battle for me to get it and I want others to get it without the fight.  Access to healthcare is part of the big picture of surviving the chronic illness fight.  Staying active is a personal fight but it can be done.

Okay, I hope that made some sense.  I need to get going.  I want to explain more, but this will take some time and editing so please continue the conversation with some questions or comments.  Staying active while in pain isn’t easy.  pain meds help, but we can’t be on them all the time and at some point I accepted that being in pain is just a part of my life.  If you have so something that helps you “live with your pain”, please leave it in the comment section.  And if you would like to tell me that this was not helpful, I want to know that too.  Thanks for reading.

 

The Mighty Turtle That Could: An Exercise Journal

Well, it’s almost that time of year again.  That magical time after the holidays when it’s all about, “New Year, new you!”  Yes, last year I joined a gym and have not been back since April-ish.  I’m trying something new this year.  Here on my blog, I will be talking abput exercises I have done starting from zero.  I am going to use this category to talk about things I find that are helpful to me, inexpensive and something that I hope will help those who read about it.

Now, I do not expect anyone to take what I write and use it as a fix all.  If you find an idea that you think is interesting and find a way to modify it to your needs, please be sure to share.  We may have different diagnoses, but we have many symptoms in common.  We’re in this together.

Stay tuned…

Day 25 of NHPBM: Advice to Newly Diagnosed Scleroderma Patients.

Day 25 NHPBM

Mission: Not Impossible.

Because scleroderma is different for everyone, my advice can apply to patients with sarcoidosis or other chronic illnesses.  We may have different diagnoses, but we all share the experience of loss.    I hate saying, “here’s some advice,” but I will write about my experience and what has helped me.  This can apply to the newly diagnosed and the not newly diagnosed.  It took me eleven years into my diagnosis to try exercising.  I went from barely able to walk, to thriving (mostly).  My point is, it’s never to late.

I would like to emphasize that trying to stop the progression of a chronic illnesses like scleroderma, is like trying to stop a freight train.  I have used this metaphor before, but for those who haven’t hear it yet, here is is:

We can slow down the freight train, but until there is a cure we will not be able to stop it.  There are times when the train speeds up and goes to fast to do anything.   When that happens, we need to jump on the front of the train, Polar Express style,  watch where the train is going as we ride out the acceleration until things become manageable.  The trick is to survive the ride.  

How to Ride the Freight Train
We can ride out the symptoms by taking meds as needed, pay attention to symptoms of depression and get treatment for them.  If you haven’t already, incorporate deep breathing, meditation prayer or all of those.  When in pain and symptoms are accelerating, our mission is to survive.  Its hard to be hopeful the flare will get better.  There may be damage done to internal organs and an ability or two  may be lost, and we may need to learn to adapt.

If I could start again in 1994, I would have adopted a yoga practice.  Meds help, but the greatest tool that makes my meds and prevention effective, is yoga.

Before Flying, We Must Learn to Fall
Moving when in pain can help alleviate it, but not without training.  Before starting anything, talk with your doctor about gentle exercise, then ask for a referral to a physical therapist who will evaluate your movement abilities and teach you tips like how to fall.

One day, I missed the last step on my staircase and fell.  What I learned from my physical therapist, taught me how to fall and prevented a possible grave injury that day.  LEARN HOW TO FALL.  Stunt people learn to do it.  Once you learn it will become a natural reflex.  I learned in 1999 after I fell from the top of a flight of stairs and sustained a head injury that nearly killed me.   I had to be relearn balance and I fall every now and then.

Move
It’s not easy to move while in pain.  There are days I only do a tiny bit of yoga, but that tiny bit helps.  I started  yoga in 2005, after years of resting and a great deal of loss of range of motion.  I had trouble breathing and my anxiety was off the charts.   Since learning yoga and deep breathing, I have maintained my lung capacity and I can move easier.  I stopped doing yoga regularly for almost a year in 2012.  I have started doing it daily and I can feel the difference.  I need fewer pain meds- if any at all and my anxiety is under control without sedatives.  I actually keep a stock of pain and anxiety meds because I have earned an infection in my fingers can happen at any time.  Getting the pain under control makes it easier to clean wounds and by cleaning them, I heal faster.  Exercise also increases circulation.  More blood to the wound = nutrition to cells and promotes healing.

Define Exercise
Before learning deep breathing techniques, I would think, “Exercise, are you nuts?”  Deep breathing exercises the muscles in the abdomen and chest.  By lying around and not expanding my lungs, my muscles tightened and nearly atrophied.  Getting them moving was hard, but the more deep breathing I did, the better I could breathe.  So, I classify deep breathing as exercise.  When I feel like I can’t move and I am sitting on the couch, I will take deep breaths.  I find now that when I need to move around while in pain, it’s easier because my lungs do not have to work harder to get air.  Deep breathing is exercise.  Do it.  Don’t beat yourself up if it’s hard.  Acknowledge it’s hard and give yourself kudos when you do.  Tell yourself it will get easier.

Yoga
I love it because although my downward facing dog is me sitting on a step stool holding on to push up helpers unable to lift my own weight, it’s my version of downward dog.  I’m trying and doing.  When I can, I work one on one with Ashley Fiala, at Living Yoga in Temecula.  With her assistance, I can nearly do the pose.  Because my hands are contracted, I am not able to lay them flat, but I adapt by holding a chair and Ashley helps me get to the pose with support.  Every time I see her, I am amazed of what I am capable of.

Getting Started
If you have never done yoga before, find a yoga studio in your area and learn in a class.  When I started, my first class was an hour and a half Kundalini Yoga class.  I spoke with the yogi Atmah Kalsa before attending.  Throughout the class, she would help me by propping up blankets for me and eventually, I brought my own step stool to help.  When I attended Anusara yoga at Yoga Living, the instructor did the same.  It helped.  One one one instruction can be expensive, but if you can swing just one hour, you will learn enough to help in classes.

Staying in Practice
It’s tough for me to stay consistent.  By nature, I am easily distracted and if I find a project, I throw myself into it and other things get ignored.  I can talk myself into and out of anything.  It’s a blessing and a curse.  I am the master of, “It can wait until tomorrow.”  The truth is, tomorrow is always tomorrow.  The time is now, and I need to remind myself to be in the present or nothing gets done.  The upside: My fingers are messed up; but I have convinced myself that someday, I will be able to open my hands again.  Yes, it’s may sound delusional, but it will get me to my yoga mat.  Once I am on my mat and things get hard; I talk myself into just doing one more exercise, one more second in that pose, one more breath of fire, one more leg lift- you get the point.

It’s hard to get started, its hard to do and it’s hard to maintain.  Anything worth having isn’t always easy.  If we just “show up” and talk ourselves into the next step to keep moving, it can be done.  It’s impossible to stop a freight train, but it can be slowed down.  Our mission is not impossible.  Choose the mission; you won’t be dis-avowed, but there is less of a chance of self destruction.  I will apologize now for the following picture of me in shorts.

 

Downward facing dog adapted for scleroderma:  Push-up bars: because my hands will not straighten out.  That is also the straightest I can get my arms- my elbows used to be worse.  I use a step-stool because my legs are not yet flexible enough to bend to sit on my heels -yet.  T-shirt courtesy of Bounce to a Cure & X-Pogo.  My apologies for me in shorts.  Brain bleach not included.

Helpful Links:

The Scleroderma Research Foundation

Yoga Assisted Downward Facing Dog (I cannot hold my own weight yet, so my goal is to strengthen my arms.  This video is a great example of how it’s done with assistance.  Do not try this alone! Get approval from your physician before even walking into a yoga studio and  of course, seek help from a yogi.  As always, beware of anyone selling products to “cure” your condition.

Living Yoga my local Yoga Studio

My one on one yoga instructor is Ashley Fiala   Watch this video of her teaching a class.  It’s a great example of how a good yoga instructor pays attention to students in her class by walking around and checking her student’s form.

My Yoga Meditation Teacher Yoga Dan

Power Yoga Evolution Studio in Andover MA

An excellent post about yoga by Chris Dean of Life Your Way

Bounce to a Cure

X-Pogo

My Health Works with Me to Fight Scleroderma and Sarcoidosis.

                                     Day 8, A letter to my health.

Dear My Health,

Thanks for sticking through all the crazy things going on.  You have been there for me through thick and thin.  I have often heard from doctors, “With all you have going on, you are very healthy.”

At first, I thought these doctors were nuts, then I had a kind of awakening.  After 18 years since my first diagnosis and 22 years since my onset of symptoms,  I’m still here. Health, you have been enduring an onslaught of attacks from the complications of scleroderma and sarcoidosis like;  contracted hands, Raynaud’s, difficulty breathing, limited range of motion and near death experiences: but with every setback,  I recover by adapting to the changes and doing everything I can in my power  to stop progression because of our combined strength. 

I may sound overly happy and kind of sucking up to you right now, but I really feel that the diseases, scleroderma and sarcoidosis are just a part of my life.  Without other aspects of my health that existed, my body would not have been strong enough to handle what came my way.  Yes, my hands are severely damaged.  Yes, my lungs have parts that are scarred by pulmonary fibrosis and my depression was at one time was life threatening.  We both almost lost our fight  then.  I was so disappointed, you joined me and we stopped eating until we nearly starved to death.  But then, we went and got help with our depression.  It wasn’t and is still not always easy, but you fought back and kept me moving to get the treatment I needed.  You, Health, kept me stubborn.    Stubborn and pig-headed.  Just ask my mom and dad and my Aunt Vicky and a barrage of cousins.  I have one hell of a stubborn streak and you and I both  use that stubbornness to keep going.  Yes, it’s good to be a Scorpio.

In 1996, when my fingers were covered in ulcers, you kept the rest of my body going.  Somehow, I had the strength to get the help and treatment I needed four hours away at the Veteran’s Hospitals in Madison and Milwaukee Wisconsin and saved most of my thumb and the rest of my hands.   I kept smoking and eventually you smacked me upside the head and made me quit smoking in 1998 by remaining patient as I smoked less and less.  I’m not even sure the exact date I stopped because you gave me time to phase smoking out of my daily habits and cigarettes became an afterthought and inconvenience.    Thank you for not giving up on me.

When I was pregnant with my son, you made it so I had seven months of feeling like I had no chronic illness.  It felt good.  It was short-lived, but I enjoyed it and that seven months inspired me by giving me hope that feeling good was possible.  Health, thank you for the warning signs of seeing orange spots that got me to the hospital and saved both me and my son’s life.  I had no idea my blood pressure was so high, but after all these years of listening to you, I have learned to take a hint.  I do wish we could’ve lowered my blood pressure before the c-section so they could’ve told me I had HELLP Syndrome, another pregnancy would most likely kill me and ask me if I wanted my tubes tied, but hey- I’m cool- we’re still here aren’t we?

Health, you can be demanding. You are not shy about letting me know I’m not eating well by throwing my GI track out of wack to get me on the right diet or eating style.  I know at first, we both didn’t want to change our diets and all that scar tissue I didn’t know was covering my esophagus allowed us to enjoy jalapeños during the first trimester when pregnant.  We’re not perfect.   Oh such good times, but we learned our lesson, didn’t we?  Thanks for hanging in there while we worked together in speech therapy to develop good habits and keep food going down the throat and not into our lungs.

Remember when we did yoga every day for over a year and regained the ability to walk barefoot and better range of motion?  Such  good times.  Thanks for hanging in there while I try to get back on track.  I have really been slacking, but I know you are going to help me get through this and we will both enjoy the rewards that come with it.

Health, we’ve been through a lot together.  Thanks for fighting with me and not giving up.  We’ve got about 50 years to go so we can see our son go to Mars and meet our grandkids.  Thanks for continuing to fight the good fight with me.  Together, we will continue to kick scleroderma and sarcoidosis’ asses and be around to see their names taken and followed by: Cured.

Love,

Karen

 

 

A Short Updated Explanation of The Mighty Turtle

Adapt, Overcome, Rinse, Repeat.

Not necessarily in that order.

Now that The Mighty Turtle has a renovated home, I would like to explain the goals and purpose of this website.  Some of you remember it from back in the day as Scleroderma, Sarcoidosis and Box Wine.  I still have the Facebook Page of the same name, but changed the blog name so it would be easier to remember.  I picked “turtle” because turtles out lived the dinosaurs by adapting.  They moved to the sea, learned that jellyfish are delicious, and know how to cruise The Gulf Stream like a champ on loose bed of kelp.  The only thing anyone remembers from Scleroderma, Sarcoidosis and Box Wine is the “Box Wine” part.  By the way, I stole the “Box Wine” idea after listening to hours of listening to The Stephanie Miller Show Podcast driving to and  doctor’s appointments between LA, Riverside and home.

Overall it is a blog, but there are resources and a store as well as a useful resource about life as a member of the human race living with some chronic illnesses, being a parent and 100% service connected female veteran.

The Mighty Turtle adapts to overcome.

My diagnoses  are Scleroderma, Sarcoidosis, Rheumatoid Arthritis, Depression and complicated damage like pulmonary fibrosis, barrat’s espohagus and Joe my God, the list ends here.

I write to raise awareness and hope to save others time by sharing about how I spun my own wheels.  In addition to written posts, I have a video series called, Scleroderma on the Fly.  This series consists of facts and helpful tips about scleroderma.  Each video after Episode 1 will be two minutes or less and will cover only one topic.  This is to provide a quick go to source thats easy to understand and easy to repeat.  I want those who watch to walk away from each episode knowing the topic.

Feedback is always welcome.  I especially need to know if there is something I talk about that does not translate or you as the reader or viewer need further explanation.  I am my own editor.  Of course I enjoy positive feedback, but critical feedback will only help me become a better messenger.   If it’s the information I give is ever confusing, let me have it!

I support research and fundraising organizations I know about and find credible by sharing their information, donor pages and more. I  am not connected to the organizations I endorse.

I write about current events as well as medical experience. There is more to life than our diagnoses. It took years of therapy for me to realize I was not my Scleroderma. I want to share that message. Though my opinions will be shared, the only thing we need to agree is that diseases like Scleroderma and Sarcoidosis need a cure and patients need better treatment while waiting for one.  (I’m a little tire of waiting.  Did someone just start playing Muzak?)

Thank you for taking the time to read about this website/blog.  I hope you will find it a useful resource and share posts when you feel they are share-worthy.  It doesn’t matter your diagnosis and this page is not just for patients.  It is for patients and those who love and care about them.  Coping is tough as both a patient and loved one.  The greatest way to torture a person is to cause suffering to those they love the most.  Not sure?  Ask a parent.   Diseases have symptoms in common.  Coping is universal because we are in this together and we can help each other by learning from one another.

Online Support Community, Inspire

Many people benefit from weekly support groups.  Many have to drive hours just to find one near them.  It’s hard to be a patient with one or more hard to pronounce, never been heard of diseases.  It’s very easy to feel isolated.

I’m not sure when I discovered Inspire.com but I am sure it is a place online where I feel so not so alone.  It helped me open up about my own experiences and help others when I could.  The site is well named, because it did and still does inspire me.

One of the many things I like about the site is you are able to vent to your fellow patients and not have it publicly shared without your permission.  It’s a community with some privacy.

Do you think you are the only one with your rare chronic or terminal illness?  Check out their search and find others.  You may be surprised.

This is who can benefit from reaching out at Inspire.com and can find a positive experience.

1. If you have a chronic  or terminal illness.

2.  Know someone with a chronic or terminal illness

3.  Are a caregiver of someone with a chronic illness.

But you will not know the benefits if you don’t  take the first step by reaching out.

I can go on about my experiences, but like any online group, I prefer to follow the rules and keep my interactions within the group.  This is a short post, but Inspire.com speaks for itself.  Please visit Inspire.com and see for yourself.  Take the first step and reach out.

My Imagination Helps Me Get Things Done

Day 3 of #HAWMC If I had a super power, what would it be?

My super power is my imagination.  I could say my sense of humor, but I’m not always funny, just creative, so I will stick with my imagination.

As long as I can remember, I have used my imagination to get me through tough times and long before I had Scleroderma and Sarcoidosis.  No, I wasn’t bitten by a radioactive Mary Poppins spider, but I do have my suspicions about that polyester uniform I wore for my first job at Taco Bell in1985.   Now THAT would be a great Halloween costume, but I digress.

My imagination helps me get so much done,   Don’t get me wrong, if the pain will be resolved with rest, I’ll rest.  But I’m in pain all the time.  So if I avoided things just because of pain,  I would not get anything done, ever.  So to get myself motivated, I will make a task sound fun or challenging. Here is one example.  I call exercise, “Studying for my pulmonary function test.” Regular exercise not only helps my circulation, it helps my lungs get the movement they need to keep them functioning properly.    Sure, I can survive a few pounds, but I cannot live without my lungs.  I believe that in order to be able to keep them, they need exercise.  Now, in a healthy person this is true.  I don’t know if it’s helping to keep my pulmonary fibrosis from spreading, but I pretend it is and it helps me break through my wall of pain to get those lungs moving.

I will wake up some days in more pain than usual.   So rather than say, “I feel awful.”  I have a better story.  While I was sleeping,  Gnomes put me in a canvas bag, dragged me down then up the stairs at least three times, gently placed me in bed and lovingly tucked me in like nothing happened.  Blaming gnomes is just more fun. Funny I mention that because when I am on a consistent exercise routine, the Gnomes visit me less.

There is one draw back to my superpower.  There are times I do it so well and graphically, I scare the pants off my friends and family.   So I do need to keep it hidden.

Finally, one last example of how my imagination really helped save the day.  In 2011, I finally got a port o cath. It’s a device, surgically placed in the right side of my chest.  It’s pink- yup, it really is- shaped not exactly oval but not exactly round with a one way valve and three raised bumps. The bumps make it easy to find the valve under my skin so an IV can be placed into the valve.  The valve leads to a tube that goes into the big vein that goes into my heart.  The tube ends probably less than an inch from my heart.   How do I explain that   to a 7 year old?  I have no fear, my imagination is here! I told my son, I’m now part transformer.  They put an adapter into my chest to make it easy to give me medicine.  Of course, every super power has it’s weakness and for my imagination, that is reality.  My son responded with,  ”That’s cool Mom, but what is it really called?”

My superpower saved the day because it helped me get over my fear of explaining a simple medical device to my son.  I tend to overcomplicate things and my imagination opened the door to an honest conversation with my son.