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.

Raynaud's: What works for me.

April 26, 2011

Exercise. It’s good for all blood vessels. Yoga and breathing exercises help me cope with pain. Stress is a HUGE trigger for Raynaud's for me. Yoga has helped me cope. I started with Kundalini Yoga in 2005. I just started studying Anusara yoga one on one with a yogi at Yoga Living Studio here in Temecula. It's helping a great deal. Remember, exercise is always a good idea.

Eating well is also a good idea, but beware of anyone who tries to sell you herbs specifically for symptom or diseases. For example, cayenne pepper is excellent for circulation, but if you have any type of Reflux, it will damage your esophagus. I mention the alternative medicine because if you seek out a yogi or yoga instructor focus on the exercise. Chanting and movement doesn't cause exacerbation of symptoms.

In 1994, My Raynaud's was very aggressive. I was in college, had to change my major, break up with my boyfriend who I moved to Wisconsin with from California. Some of us have stressors we're not even aware of. I was in denial, which was the stressor I ignored and found some poor ways of dealing with it.

Raynaud's is a response by the sympathetic nervous system- fight or flight. It is an unconscious reaction to a threat. Now that we're no longer hunter/gatherers threatened by predators our stress has changed, but the fight or flight response is still present. How will we feed ourselves? Take care of our offspring? Deal with our environment? (i.e. cold) Take care of ourselves?

As someone who experienced Raynaud’s at a young age, I would suggest to anyone with Raynaud's to find ways to cope with stress such as yoga, meditation & exercise. Don't hunt for stressors if you don't know what they are. That just creates more stress. Focus on the coping so that you are prepared for whatever life hands you. Something as simple as a manicure or pedicure once a week is a stress reliever. A massage once a month is great. My biggest regret is not doing yoga in my 20's. I discovered it in my 30's. Find a studio near you. Keep working with your doctors. I have some posts about what happened to me on my blog. I don't want to scare anyone so if you read them, please keep in mind this was almost 20 yrs ago, before Viagra and no one believed me when I reported my onset of symptom. Back then my doctors wrote it off as "hysterical female syndrome".

Here is the website to the Yoga Studio I go to called Living Yoga Andrea; the owner is also an excellent source of information as well. You may be able to find a place similar to it in your area if Temecual is too far.

One more thing:
My mom used to massage my hands gently, when she could and when I lived with her. Just throwing that out there. If I was sitting around watching TV, I'd take a wet towel, put it in the microwave until warm, coat my hands with lotion (I now use Kama Sutra Almond oil- works better than anything I've tried and smells great) cover my lotioned or oiled hands with towel and relax while watching TV or hanging out. Then after the towel cooled, my mom would gently massage my fingers, great for my circulation and my mind. A partner, roomate or a good friend also make great massage buddies. It's one way friends and family can help when they feel helpless.

Yes, My Butt Does Make My Butt Look Big.

So, I'm doing something about it. I'm getting a membership to a local yoga studio today. I have attended a few classes already and they have done some one on one work with me to help me do the poses correctly. I'm really excited about it. Not only will this be great for my lungs, range of motion and mood; it will help with that big butt problem.

Off to the VA today for a routine appointment. For those of you traveling the 215, you've been warned.

Have a great day all!