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.  

Scleroderma Pit Stops

On Christmas Day, a nice red bump appeared on the second knuckle of my right thumb.  Yesterday it swelled some more and today, it’s bigger, the skin is splitting and I’m headed to the VA doctor tomorrow.  Hopefully, there will be a rheumatology clinic or I’m going to have myself a nice wait in the ER.

Could this infection be a result of doing Krav Maga?  What kind of nut with scleroderma takes a self defense class?  A smart one.  I can’t stop moving because I’m afraid of being hurt.  I’ve tried that, and it backfired.

I have been getting infections in my hands for 18 years.  The cause of these infections were cause by my knuckle(s) hitting an object.  These injuries were bigger ones in the beginning.  Tripping or misjudging distance and knocking my hand into something:  There are too many to list and to be quite honest, I can’t remember all of them.

I would experience open and unhealed wound pain for months. It used to be when one knuckle bursted open, the other on the opposite hand would do the same, then another knuckle and so on probably resulting in a thousand or more wounds on my hands that have opened and healed.  At first, I thought a thousand or more sound high, but this has been ongoing for 18 years now.  Scleroderma is under control, but Raynaud’s will always be something I need to prevent and treat when it occurs.  Raynuad’s isn’t the only gift scleroderma keeps on giving; there’s calcinosis, the”C” in CREST Syndrome.

Calcinosis is not a result of too much calcium,  Calcinosis are calcium deposits. For me, these calcium deposits work their way up to my skin and break through causing an open wound.  If I am not taking Viagra as prescribed, my wound heals slowly and is more susceptible to infection,  delaying healing even longer and causing more complications.

So, why don’t protect my hands by not doing things that may injure them?  The truth is; the more I sit still, the weaker I get.  I tried sitting still and I still got injured.  I got injured because I was not moving other parts of my body that could prevent injuries from minor incidents.  Scleroderma is a progressive disease.  I have slowed down the freight train, but it’s still moving.  That means if tissue goes unused, I loose it.

One day, I couldn’t bend my wrists and I haven’t since.  It probably happened over time, but how could I know if I was not moving them. I was so busy “protecting” my fingers from injury, my wrists fused. And, because I couldn’t bend my elbows, when I wanted to use my hands I injured my knuckles even more.  My brain would signal my wrist to bend to react to small spaces, but because my wrists were fused, BAM!  – Open knuckle.  Good times.  So, yes, I am going to get wounds and infections in my fingers and these are going to happen if I do Krav Maga or not.  When these injuries happen, I will be sitting out on classes because I need to take time to heal, but stopping activity is not an option. I’ve got lung tissue to keep moving, my digestion is better when I exercise, so while sitting out my classes I will be doing Yoga or some walking.

Today, I sat on my couch and rested.  My house is a disaster and I hate sitting in it, but cleaning may cause the wound I have to open.  One good thing about this wound is the skin has not broken, yet.  I want it to be drained tomorrow at the VA so that it can be swabbed for MRSA.  Usually, MRSA is assumed because I have a history of it and that’s a whole other post.  I declined to post the wound because it’s a bit gross and I am very desensitized to the look of it and I know it’s doing better than it looks.

I took the time to write this so that when the healing begins, which is when the pain is most intense, I can read this post and remind myself why complications of scleroderma, like ugly, painful wounds, will not keep me down.  Scleroderma, even when stable requires life long maintenance to watch for symptoms and keeping my body heathy to fight the complications- not to mention the fun of normal aging.  Yoga, Krav Maga, and a good diet are my ways of fighting for my life.  My life is not perfect, it did not turn out the way I thought it should.  Does that happen for everyone?  You bet.  Scleroderma or not.  As Amy Farrah Fowler so eloquently said  when asked about her life,  “Just like everyone else’s. Subject to entropy, decay, and eventual death. Thank you for asking.”

And thank you for reading.

 

 

In The Activist Spotlight, Paul Fugelsang: Trailblazing for Mental Health

 

Bonus Prompt:

Nominate a Health Activist and Share Why

I have nominated Paul Fugelsang for a 2012 Wego Health Activist Award: Trail Blazer.  I wrestled between Silver Stethoscope and Trail Blazer because  Paul is a practicing, licensed therapist in North Carolina.  He has come up with a way to help clients see therapists who will offer mental health care at reduced rates.  Paul Fugelsang recognized the  biggest barrier to mental health care in the United States is money; and he is doing something about it.  I was inspired to share his work here in The Mighty Turtle’s Fundraising and Activist Spotlight.

Those of you who keep up with this blog, know I receive outstanding mental health care, courtesy of my friendly neighborhood Veterans Hospital, but there are millions of people in our country going without the proper mental health care they need because they are not “lucky” to be a service connected disabled veteran.

People go without because they fall through the cracks.  They make too much money to qualify for aid and if their insurance  does cover mental health care,  it’s often inconsistent and  short term because of higher copays. There are waiting lists,  long office waits  times and some mental health clinics offered are on a first come first serve basis.  The United States has come a long way with progress in mental health care, but we still have a long way to go.  There is hope because of practitioners like Paul Fugelsang, founder of  Open Path Psychotherapy collective: A program that will connect patients with therapists.  

In Paul’s words, “Open Path Psychotherapy Collective will be a network of like minded mental health clinicians dedicated to reaching those individuals and families who are falling through the cracks. The Collective—with the support of the Foundation for Excellence in Mental Health Care (FEMHC)—will match participating clinicians with individuals in need of local, in-office mental health care—for a steeply reduced rate.” (From Interview with Kelly Carlin.)

Paul’s goal is to “Create a nationwide collective of mental health practitioners who are in private practice who all agree to see one or two low fee paying clients. A goal of 2500 sessions per week… of low fee therapy nationwide.” (As said in an interview by Kelly Carlin.)

I think it’s an excellent start to an amazing, non-profit nationwide program to help those who need mental health care and are  falling through the cracks.  How is that NOT  trailblazing?  Go now and nominate Paul Fugelsang for a 2012 Wego Health Activist Award.  Then, be sure to spread the word about the fundraising that ends November 15th.  After that, watch for the launch of Open Path Psychotherapy Collective.  Watch Paul blaze a trail to help those who seek it, get mental health care they need.

 

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

 

 

The Purpose-Free Driven Day

This morning, I felt unusually fatigued.  I had no energy.  My mind said go, my body said no.  So, I pondered the cause of today’s  fatigue with some questions.

Lounging is not a crime!

Were my lungs exchanging oxygen properly?  I breathe easier after taking viagra: did I take it? Then there’s  Pulmonary Fibrosis because of scleroderma and/or sarcoidosis: because really, who the hell can even tell the difference between the symptoms?  Okay, I  know it can be done if  I gave myself a pulmonary functions test every morning; but I don’t have that kind of time; there is no such thing as a live in respiratory therapist and if there is, I never want to know.  Was my Pulmonary Fibrosis getting worse?  Then I remembered I was breathing excellent yesterday, so that wasn’t it.

Maybe it was a football hangover from the Packer’s game last night.    I’m no expert, but that was clearly an interception.  That was a “hug” not a touchdown!  I was glad my son was not present so he didn’t witness my lack of creativity as I relentlessly hurled foul language at my unsuspecting and innocent TV machine.   I thought about it some more, and realized  that was a reach as a reason for my fatigue.  The big picture is that  it’s just a game.  And although the horrible call effected the outcome of the game and placed my beloved Packers in second to last place in their division, it did not warrant the kind of anxiety that would make me feel so exhausted, so I moved onto the next scenario.

Yesterday was port-o-cath flush day.  Between infusions, I have to drive 46 miles, one way, to get my port flushed to avoid  clotting.  Let’s call it Port Maintenance.  I was exhausted after I got home and even took a short nap after the drive.  Heparin is injected into my port at the end of my flush, so I wondered: Could that small dose of heparin make me tired this morning?  No.  It was inconsistent with past flushes.  The low dose of heparin does not effect me in that way, why would it start now?

Then, I did something.  Something I had done before, but changed my view about doing it.  Isn’t reality about how we view things anyway?  Sure grass is green, but what if I was color blind?  The grass would still be grass, the color green would just look different to me because it would only pick up the hues my cones could pick up, right?  What is this “something” I tried?  It’s called rest.

Yes, I have rested before: usually because of something going on with the progression of scleroderma or sarcoidosis; some kind of weird infection with a MRSA kick; a flare of some kind; or an injury on the verge of infection.  After almost twenty years since my first diagnosis, the possibilities are limitless.  But what if; and I mean a big IF here, what if I just took the day off?  What if I just rested on the couch in front of the TV?  No computer, no phone within reach and most of all no guilt: just a purpose-free day.

Why not?  Why not have a purpose-free day?  What’s with all this pressure to be purpose driven?  Everyone’s life has a purpose whether we are driven by it or not.  So, I removed the purpose from my day and more important, I removed the guilt.  What is with me and guilt?   Why not live a day without it?    When ever I do rest, I give myself guilt.  Of course, I must blame my Catholic upbringing  for the gift of guilt, but honestly; it’s time to let that guilt go, stop blaming a faith and just go about my day: purpose-free.  My guilt is something that I put upon myself.  I need to stop blaming all of Catholicism because blaming takes work and work requires a purpose and the goal here is to be purpose-free.

What could possibly go wrong?  There are no lives on the line.  For Christ’s sake, I’m a Buddhist  and it was time for me to capitalize on the idea there is  “no known Tibetan word for guilt” (The Art of Happiness).  Okay, so I identify more with Zen Buddhism, but let’s not overcomplicate things.  Let’s leave the overcomplicating to that narrative voice in my head.(Please and thank you!)

So here I am at the end of my purpose-free day.  I have to admit, it was a great day.  I took a nap on the recliner.  I took a nao on the couch and even watched Caddyshack.  My purpose-free driven day was a success.   After this post,  I’m ending my day with a little meditation; a shower would probably be a good idea, and I will read a book unit I fall asleep.

Funny how I managed to have a successful purpose-free day, yet found motivation to write a post.  I’m not writing this post out of guilt.  I’m writing this simply for fun. The fact I have scleroderma and  sarcoidosis and pulmonary fibrosis is not fun.  They are just a part of me.  I am not them.  They do not define my purpose or need to create.  It feels good to express myself.  I use my experience with Sarcoidosis, Scleroderma, pulmonary fibrosis, Raynaud’s and anything else the world throws at me the way an artists uses colors in a painting.   I suppose that’s why expression is referred to as art.  I’m not saying my posts are a work of art, but I am making something with my words.  Writing is my way of finger painting.  At times, it’s messy but  it’s evidence of my existence in this plane.  Dare I say my “Special Purpose”?  Na, too easy.  I’m just going to enjoy it.   I had a day with no guilt and, I feel good.  My little something for the effort: “So, I got that goin’ for me:  Which is nice.” 

 

Hitting My Wall And Breaking Through

In June, I hit the wall*.  It’s not my first wall, and it won’t be my last, but I have broken through this one, brick by brick.   I hit my wall in June after a personal disappointment  and  became less active in social media.  Not as a blogger, but as member of the community.  I had given up on some goals I had originally set and  I couldn’t shake the feeling I had nothing left to offer, until this past Sunday. September 1st, I started a morning routine that I have committed to doing for 40 days.  It’s some deep breathing and mediation.  (And yes, I have had to start my 40 days over after skipping my third day; and yes I will be blogging about that once I complete it.) Back to my point: Sunday morning, I opened my eyes at the end of my routine and my answer was staring me right in the face.  It was a dry erase board filled with ideas, topics and goals on it.  I realized I was not disappointed because of what happened.  I was disappointed because of what had not happened.  This dry erase board was crying out to be read.  These were my ideas and my stranded ideas had been subconsciously begging me to release them from their two dimensional prison.  (Cut to Superman 2 and those villains hurling through space in their triangle.) So, I’m setting them in motion.   First, I added another FaceBook page, The Mighty Turtle That Could. It’s entirely devoted to activity.  Not all patients are into or able to do activities so I made it separate.  So far, I have been the only participant, but eventually, someone else will share.   In addition to my Facebook page, I added an online publication of the same name.   My original idea was a page to get patients moving, but I remembered not all patients should or can move; so, I made it about activities.  This could be just some simple deep breathing, “head bopping”(Lexie) to some music and of course exercise.  I want people to share their success, goals

If you are able, you can share this publication with friends and family through social media like Facebook, Google+, Twitter, Linkedin and more.  By sharing, you can do more than just raise awareness; you can help patients, family members, friends and caregivers who feel isolated find others who are in the same boat.
My experience with social media has shown me I am far from alone with scleroderma, sarcoidosis, depression and coping with progressive degenerative diseases.  My very first friend with scleroderma, I met on Twitter.  She lives in Denmark and I am close with  Another, in Indiana.  We are all truly in this together, and there are no geographical boundaries, thanks to social media.

So, as the bricks fall from my wall,  I have accepted I do not type as fast as I can think.  My thoughts flow through my hands as they have always done, so voice recognition software is not an option.  I suppose it could be if I tried, but it makes me feel good that I can still create with my hands.
Thank you for continuing to read this blog.  I hope you will visit other writers on my blog roll and www.sclerodermablog.com Reading the blogs of other patients and topics other than Scleroderma and Sarcoidosis not only helps to raise awareness, but reminds us we are not alone and we are not our diagnosis.
If you blog and you would like to add your post to The Mighty Turtle That Could publication or find one you would like me to include, contact me through FaceBook or Twitter
*If you are unfamiliar with term, “Hitting the wall.” It’s a term most often used by athletes, but it can be applied to personal ambitions as well.  In this scene, from Run Fat Boy Run, Simon Pegg’s character is brilliantly shown breaking though his wall near the end of a marathon. Here is the set up:  His character is not a marathon runner, but runs a marathon in attempt to win over his former fiancé he left at the alter years before.  Before he busts through his “wall”, Pegg’s character has to face his feelings.  To me, it is a very powerful scene about how no matter how many people we have supporting us, we still feel alone.  We need to face our fears and feelings we have stuffed in order to feel connected with those supporting us.   Click Here to watch.  Please comment if you have felt this way.