Jedi Wound Care

Jedi Wound Care

Last night, there was a "scab" on my middle finger  MCP.  The skin around it was swollen and red.  It was hot to the touch.  I decided to use  non-stick gauze cover it and applied antibiotic ointment.

I've Been Slimed!

Two house later, I took a peak and there was - for lack of a better term, green slime.  I removed the dressing and prepared myself for a relaxing soak.

De-Sliming Protocol Engaged

I filled  bowl with warm water and hydrogen peroxide.  I soaked for about ten minutes.  The slime was drawn out by the warm water and the peroxide cleaned the tissue.  Note: Never soak in straight peroxide.  Always mix with water.  Ask your doctor or a wound care health practitioner at your next doctor's appointment for advice about soaking.  It's not that anyone is withholding secrets: Appointments have time limits.  Put this question on your list.

I soaked my hand for almost 10 minutes.  I took it out of the water frequently because I was curious and impatient.  That's how I made the time pass quickly.    When my hand was immersed in the water/peroxide solution, I could see the "slime" float away from the wound like wafting cigarette smoke.

When finished with my soak, I rinsed with sterile saline solution.  (Warm water will do if no saline)  I gently dabbed away remaining slime that was now yellowish-white, and allowed it to dry for about 45 minutes.

That's A Wrap People

It's not always possible, but after soaking if you can let the wound dry out before covering, skin is less likely to break down.  Don't sweat it if you need to cover it and go.  Just use non-stick gauze with no ointment to let the gauze absorb moisture.  Bring some ointment and supplies for a clean dressing change with ointment later.

Once the wound is dry, apply ointment to gauze straight from tube.  By applying to gauze, you are not compromising the ointment by applying directly to tissue, and you won't need to use a cotton swab.  A cotton swab to the wound may not sound "traumatic" but it has been my experience, the less I touch the wound, the better.

So, a dollop of ointment to the gauze, then apply tape to back of gauze and smooth tape gauze side down over wound.  If you have Colban (stretch it- you dont want it to be constricting.) or a thin way to wrap the wound, great.  I have uses a thin ankle sock with holes cut for fingers and thumb when I don't have something.   I roam around the house in tape & gauze, but when active, I wrap it for extra protection.

The Law of Attraction

I don't know about you, but when I have a healing wound, if I'm going to bump into something, I will bump it with my wound.  Yep.  I have tried to be more aware and cautious, but that only seems to make it more likely to bump or bang it into something.  I call it The Danger Prone DaphneEffect.  So, rather than fight it, I wrap it.  So, yeah, the sock is not crazy.  Ya gotta do what ya gotta do!

And now, some before and after pictures.  Try not to be eating.  If you have question's please post them in comments.  If I don't know the answer, I will find one or send you to a source that could.  

See the hole? That is surrounded by tissue that was once swollen, then drained by soaking. Notice the redness around the tissue surrounding the hole. Never, ever puncture a wound. Soak it and let it drain. The implement used to "break" it will introduce bacteria that can make it worse. This picture was taken last night. The anatomical location is my middle finger knuckle attached to my hand or MCP. Still wondering, go to link provided for hand anatomy.

This morning: The tissue is not as yellow as it appears. I left these photos unedited because it did not help. The redness present last night around the swollen tissue is gone. The area is sore, but only if I press on it, not to the touch. It is also no longer "warm". When I removed the dressing this morning, the tissue was wet and beginning to break down, so I have left it to air dry this morning to allow my skin to regain some integrity before showering. After I shower I will let this air dry for an hour before rewrapping and setting out for my active day.

Hand Anatomy 

For more information about Scleroderma and related conditions, please visit:

Scleroderma Research Foundation

Scleroderma Foundation

Scleroderma Care Foundation

FESCA

The Raynaud's Association

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

And a word from our sponsor: Me

Votre Vu

I'm A Guinea Pig & I'm Okay With It.

Edited 10/31/2013

Medicine is a practice.  Scleroderma, Sarcoidosis and many diseases are not well know by many doctors.  It's important to find a doctor with experience with a chronic illness like scleroderma.  If you have a doctor in your area, wiling to consult or allow care management by a doctor who has experience,  you have hit pay dirt- but that's a whole other post.  

So we have doctors working with us, as well as those who love us who aren't doctors and couldn't pass an audition to play one on TV.  It doesn't matter, chronic illness or not, we get a lot of unsolicited advice and some of it is just hilarious.  

When I was pregnant, I had heartburn.  According to my Aunt Enes,  I was getting heartburn because my baby had hair.  It couldn't be the baby  kicked my stomach around like a flat, acid filled soccer ball.  No.  My baby had hair.  Which I guess is rare for mammals?

Okay, bad example because she gave no advice, just her opinion, but it's always a great story.  She tells me what she believes, because she cares.  Don't we all have people who tell us things because they care.     Yes, we do.  Even you, J.D. Salengers  -if you lock yourself away, your inner voices will get to you, eventually.

Here is a great example of some bad advice I received in the 90's:

"You know Karen, you should try cayenne.  It's great for circulation".

Yes, it sure is.  Not only is it great for circulation, it's a great way to exacerbate reflux, a common related condition to scleroderma.  Oh yeah.  Good times.  Forest Gump once said to Jenny, "Sometimes, there just aren't enough."   He was right about that.  Yep.

Out of all the advice and recommendations we receive, no advice should be listened to and tried more than the advice of our own doctors.  Sure, we all run into quacks, but we shouldn't be discouraged.  Most doctors got into it because they wanted to help people.  Some loose their way, but many truly want to do their best.

Listen to fellow patients, talk with friends about your treatment if you are about to try something new.  Go over the risks and benefits.  ALL medications and treatments have side effects.  You will never know how they will effect you, if you don't try them.  But before you do try a new treatment, do your homework.  Seek out fellow patients and learn from their experience.  Know what you are about to put into your body.  A chronic illness has a great way of making people feel helpless, but we are never helpless.  We may not get the outcome we want, but we may get the outcome that works, even if it takes a few adjustments.

So, if you skipped to the end:

We all get lots of unsolicited advice.  Of all the advice we get, the source we should listen closest to is our doctors and medical practitioners.

Yes, we have to try many things before we find what's works and you'll ask, "What am I, a guinea pig?!

Don't despair.  Here is Randy, in "Honebadger Narrates The Guinea Pig" - Oh how precious!

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