The "Bromance" between My Vanity and My Lungs

 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.

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.

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.  Nothing super complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.

Back in 2005, I started 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.

Everyone needs a goal.
It's more fun to think
about working on my figure,
 than keeping lung tissue
moving to keep it from
hardening.
 Photo by @regretfulmom.

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 was 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.

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.

Yes, It Looks Scary, but it Will Grow Back...

I've had a wound /ulcer /hole in my knuckle for a few weeks now.  I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.

I have to say, the hole was huge two  days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely.    Inside the hole it's just gross, but very clean and rarely oozing.  With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words:  I still need to go before the Jedi Counsel.

For those of you experiencing ulcers from impact, calcinosis or Raynaud's, I'll post pictures of the wound progression in Pinterest.  These wounds can be scary and insanely painful- I don't have to tell you that.  I want to post them so you know that you are not alone.  When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally.  Not that these wounds are normal.  I do have a choice to avoid them.  I live alone and I don;t like asking for help and I love to get  out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still.  Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care.  I have accepted it as a very painful inconvenience.  I get a sore, take care of it and roll with it as it heals.  I can focus on how much it sucks, or I can tale care of the wound and focus on life around me.  It took years for me to get here.

A few of my favorite things... and I don't feel so bad...

If you are new to these ulcers, learn to take care of them.  Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape,  Colband and cause.  Yes, stockpile and squirrel away.  Never  turn down free wound care supplies when you can get them.  Saline solution is outstanding for  rinsing wounds.  Saline filled syringes can be reused to help rinse.  In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going.  I am to go before the Jedi Counsel for guidance.

Have a great day everyone!

PS:  instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them.   They will be up Saturday, but connect with me on Pinterest if you happen to be there.

The bandages always make it look bigger than it really is.  This is quite comfy.  

The Virgin Diet Book Review (kind of), My Sexy Liberal-ness and Why The Mighty Turtle is Not a Business or Non-Profit.

Originally posted January 13, 2013

Edited September 10, 2013

This isn't your every day book review.    I am writing this because I read The Virgin Diet, by J.J. Virgin and I am making some changes based  what I learned from the book, my experience and research.   I learned of J.J. Virgin from an hour presentation she did on PBS.

So, after two weeks of fast food and processed snacks; a month of reading and research, I have decided to follow The Virgin Diet for 21 days.  I'm trying it because I still have symptoms of scleroderma and sarcoidosis that seem to get worse when my diet has more processed foods in it.  Why not cut out processed foods?  It's not that simple.  Foods often identified with health are processed; like  Whole grain cereal, tofu and more.  I chose the Virgin Diet because the author offered an easy to read guide to making the 21 day transition, what foods to eliminate, and how to reintroduce them.  I also like this approach because it's not vegetarian.  I need my protein and I am thankful to all creatures for generously keeping me alive.

Dear Bread,
I love you and I miss you deeply. See you again soon.
Love, Me

Another big change for me:  I have been using Isagenix shakes since 2007.  I have trouble absorbing food and I notice a remarkable difference in pain and inflammation when I am unable to get the nutrition I need if I don't start my day with a protein shake.  I changed to the Virgin Diet Shakes from Isagenix.

One  thing that always bothered me about Isagenix is the multi-level marketing approach they have.  I believed in the product but I had a heard time endorsing it because I did not want to use my illnesses to market it.    Yes, I may be my own worst enemy, but just because something works for me, doesn't mean it will work for everyone.  I saw it as a conflict of interest.  Sure I have scleroderma and sarcoidosis.  Sure Isagenix helped me, but I could not bring myself to drag Isagenix into raising awareness of scleroderma and sarcoidosis.  I don't want anything  exchanged anything except information.  Does that make me  stupid?  Maybe, but this is not a business model.  Many others and I are in the fight of our lives.  Scleroderma awareness and sarcoidosis awareness is every day for us.  I am lucky enough to be able to write, go to my doctor's appointments and say whatever I want.

Right now, I am lucky to have my Veterans Benefits and Social Security.  Many patients in my position are fighting to get Medicare and Social Security.  I know my perspective is somewhat unique as a female veteran in the Veteran's Healthcare System for 18 years with rare conditions.  I have had opportunities to join or start up non-profits and make a salary, but then my opinions are subject to those who write my paychecks.  In April, I became a Votre Vu Brand Ambassador .  I love good skin care and make up, so this will be my attempt at a part time job.   The Mighty Turtle is not a business model.  I like being free to say what is really on my mind.  And I don't have to hide my Sexy Liberal-ness .

Back to the shakes:  Another reason I switched shakes is that Isagenix uses whey protein.  yes, there little to no lactose in it, but whey is dairy. Dairy is one of the items to cut out of my diet for 21 days.  I want to know if dairy has any effect on me, so in order to do that, I need a shake with no dairy- plain and simple.  I do think Isagenix tasted better  initially, but Virgin Shakes have grown on me.

So, why not a soy shake?  Soybeans are genetically modified.  They grow into things nutritious like edamame and turned into tofu. Soy is talked about in detail  in the book, The Virgin Diet.  Those seeds are sold to growers from companies like Monsanto.  (In fact, if you do the research, Monsanto is everywhere.)    Remember Proposition 37 in California?  Monsanto fought hard to stop labeling of foods grown with genetically modified organisms or GMO's.  That was no coincidence.  So, soy is off the menu for 21 days.

Why such drastic changes in my eating habits?  Well, it doesn't seem so drastic once broken down.  I have the discipline to do this for 21 days, I just need to use it.  My diet/eating habits, although full of protein shakes, consists of almost no vegetables.  When I looked at my eating habits in detail, I was getting almost all of my nutrition from dairy products.  Why not tweek things a little and see what happens?  What if I feel less stiff in the morning?  What if I find I have more energy when I exercise?  I'm not exactly in remission, but it couldn't hurt to tip the scales in the direction of even better health so that when I do get a flare; my body can handle it better.

A bag of frozen, individually wrapped chicken; frozen broccoli; frozen salmon and coconut milk for my coffee. New year, new fridge; why not?

I already  know that processed food is not good for me.  At my last infusion, I ate a Keebler "peanut butter and cheese" cracker snack.  After, I had to sleep before I could drive home.  Other than scleroderma, sarcoidosis and major damage to my hands, I am pretty stable in my symptoms and the progression has slowed down.  It's a new year and I find myself in a new apartment with an empty refrigerator.  I think it's a great start.  So, I will post every now and then about my progress and then the eventual outcome.  Until then, I will keep wishing my boxes to unpack themselves, and maybe post a few love letters to bread.

For more information:

Caring Hands Sarcoidosis Network of Michigan

Bounce To A Cure 

Scleroderma Research Foundation

Scleroderma Care Foundation

Project Scleroderma

The Scleroderma Foundation

J.J. Virgin on Facebook

My Votre Vu Online Store

We Only Need To Agree That Scleroderma & Sarcoidosis Need a Cure...

Presenting... My guest post on The Rude Pundit!

This past Friday, my guest post was published on The Rude Pundit's Blog.  I talk about my experience as a female veteran in the 1990's, after my diagnosis with scleroderma.  It's a little more lively than posts here on the Turtle, hence the fun of guest posting.  I had a great time writing it and am grateful for the opportunity The Rude Pundit gave me to share my experience.  I hope you will take a moment to check it out and enjoy reading it.

A Slice of Life as a Female Veteran

Stomach Acid: Inspiring, Isn't It?

It's 4:20am and I have just spent the last 20 minutes gargling and rinsing after waking up lying flat with a mouth full of stomach acid. You see I fell asleep on a stack of pillows practically sitting up, but gravity had it's way with me last night. It's been happening frequently on my vacation because I forgot to pack my wedge pillow. This time it was so awful, I'm too freaked out to go back to sleep.

I have to admit, I don't follow all the rules of Reflux. I have coffee in the morning. Occasionally I eat onions. Last night, I had Ice cream. I usually do not eat at least 4 hours before going to bed. I was planning on staying up to watch the movie Paul with my brother, but I crashed while I was putting my son to sleep. He's on the tail end of his separation anxiety phase and until he's completely asleep, he's got a death grip on my arm.

He's about to start the school year next week. He's progressively getting better and will soon have no problem falling asleep on his own. I know I'm supposed to just let him cry himself to sleep, but I just can't. To be honest,I have separation anxiety as well. He stays with his dad every other week. I hate joint custody. I feel like I'm cheating or something because he's with his dad 2 weeks out of the month. Shouldn't I be enjoying my free time?

I think the root of the problem is that deep down I feel like I will be making up for time I haven't lost yet. Let's be realistic: I have two progressive diseases. I plan to live another 60 years and although I don't believe in God I can still hear her laughing.

I'm afraid of what I might miss, so that extra 8 hours a day I spend with him while I'm sleeping will somehow make up for it. I also take every opportunity to drop some knowledge on my son. He has a great vocabulary for a 7 year old. I don't give him nick names for private parts when he asks me where babies come from. I tell him the truth about how he came into this world 8 weeks early, but it's a happy story because I got to meet him 8 weeks early. It's amazing how one can learn to spin a story about an event that scared the shit out of my family, into an amazing story of how strong I believe this little boy is.

You see, although my health is an ongoing sometimes soul suckingly depressing fact of my life, I am one of the lucky ones. We all know someday we are going to be gone from this world. Anything can change in a minute. No different that a completely healthy person stepping in front of a bus. But for me and probably many like me we are very aware we are living on borrowed time. Every minute is a gift. I've squandered my share, but to finally get to my point, I use every teaching moment I can with my son. I also forgive myself for giving into his separation anxiety issues at night when he goes to sleep.

This started out as a rant about Reflux, but like any good therapy session, it shined daylight on the underlying issue. Not my son's separation anxiety, but my own. I make any moment I can a teaching moment and just for now, it's okay to indulge myself by listening to him sleep at night. This phase is in it's transition with him. He will be going to bed on his own anytime, but just for now I'm going to take advantage of the extra hours I get with my son, even though he's asleep, because every moment is a gift.

What's New

Well I can't tell you EVERYTHING, but I will dish. I've made some changes in my life. I broke up with my boyfriend a few months ago. He's now my room mate in addtion to the other room mate. I moved my room right next to my son's and let my ex have the master bedroom. Why still live together? Well, it's a 3 year lease, he walks the dogs and is a very good friend. So it's the opposite of Three's Company, 2 men and a woman.

If you follow me on Twitter or Face Book, you have seen I recently took a trip to The Bay Area to my brother's. He and my sister are my two best friends, so we were one short but we had a great time. I brought my son's Skippy Jon Jones along on my road trip. While I was up north my laptop exploded and I'm still in the process of exorcising the demons from my desktop PC. So now I am typing on a teeny tiny Dell I'm in love with because it works.

I have been working with Jules of www.whatthejules.com We have been video blogging or "vlogging" together. We work well together and we are becoming great friends. Please visit her site to check out our Vlog-isodes. We have chemistry and we think we are quite funny.

I started a Box Wine Book club on face book. I am currently in therapy to work on growing my spine after years of playing a door mat. I thought, "what a great idea to share the books I'm reading". So, I posted a book I had started reading. The more I read the more it became about my walk with Jesus and less about my journey. Hey, I love Jesus. he was all about caring for the sick and all, but that has nothing to do with my spine regeneration. So, that's the last time I do a book club about a book I'm in the process of reading. I'm changing the book to Bossy Pants by Tina Fey. I've read it, it's wonderful and I can't wait to talk about it on Face Book with anyone who has or is reading it.

I have set two new goals. The first is to allow myself to be me. Yes, I'm just going to "be" for a while. I never quite got over my divorce as far as being on my own for a while so other than the occasional friend with benefits, no relationships for me. My second goal is to get into shape and have an ass almost as well sculpted as Shakira's. I say almost because let's face it, that woman has got a fine backside. It's good to have goals.

How will I do it you ask? Well the first goal will involve reading and learning about setting boundaries.For example, I used to expect the worst from people so that I would never be disappointed. It turns out that was a very bad idea. I'm going to expect the best. So far, I like this approach much better. I have a lot to learn about myself and life and I look forward to the personal growth, which I hope never stops. I will acheive my second goal by Yoga and Zumba. My motivation is to post some hot pictures of me- fully clothed of course. After looking through photo albums from the last 10 years, I have few very good pictures of just me. I though it would help motivate me if I felt like skipping Zumba class and so far, it's working.
I am also working with someone to rebuild my blog. Most of my energy will be spent putting that together so please forgive me for my fewer postings. I do appreciate everyone who takes time from their busy day to read my 2 cents. I am very grateful.

So, now that you are up to speed, please visit my Face Book page and answer my question of the day. Thanks again for reading and raising awareness of Scleroderma, Sarcoidosis, Autoimmune diseases and my quest for a backside like Shakira's.