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, Pulmonary Fibrosis, Sarcoidosis; Need Box Wine.

two kids buried under paper work and a lap top with the note: help me!

Has anyone seen the kids?

Well, because of my meds, obviously box wine is out of the question: But a girl can dream. (Sigh).  I set out to make this post about why a patient like me with scleroderma, Sarcoidosis and pulmonary fibrosis would attend a health and fitness convention, then I realized the answer was obvious: Health and fitness make my quality of life better.  So, if I stopped here, that would be one short post, so I will tell you more.

On September first, I made a commitment to meditate every day for 40 days.  If I skip a day; no matter what, I must start over at day one.  So, here it is October first and I’m on day one- again.  There is hope I will make it to day two tomorrow, but it’s still early, but  I wouldn’t put money on it today.  Tomorrow, that;s another story.

Meditation and Deep Breathing Helps: But you have to do them in order for it to be of benefit.
The great thing about the meditation I am (attempting) to practice , is that it involves deep breathing based on Kundalini Yoga practice.  Back when when I did yoga consistently, the type of yoga did not matter; be it Kundalini, Anusara, Vinyasa or yoga on the fly: I was breathing and moving better.  Scleroderma, Sarcoidosis and the effects of Pulmonary Fibrosis were not dominating my life.  But now, as I continue to slack in my practice, I feel the effects of fatigue.  If feels like my lungs are not exchanging oxygen as effectively as they could.  My last Pulmonary Functions test showed that my oxygen exchange improved with the use of albuterol.  Now, albuterol and I have a rocky history and although it offers immediate improved air exchange, the side effects cause other problems that keep me from breathing properly outside of a clinical setting.  The only way I can describe what albuterol does to me is this:  It’s like doing cocaine without the euphoria. It makes me climb the walls; resulting in anxiety, panic attacks, swollen thoracic lymph nodes and the problems those results cause.  This actually defeats the purpose of opening airways because those side effects cause me to get LESS oxygen into my lungs.

No Snakes On A Plane Here
By the way, I tried to find a link about pulmonary fibrosis and albuterol that would not scare the begesus out of my family.  Here is my statement to calm everyone down:  My condition is stable. Pulmonary Fibrosis is in the lower lobe of my left lung and there is a little in my right.  It may be right or left- I always get it confused, but you get the point.  I have fibrosis and restricted alveoli  due to inflammation.  My lungs are at 85%, which is not bad for someone with Pulmonary Fibrosis, 20 years of Scleroderma and let’s not forget about the Sarcoidosis.  So, please relax.  There are no snakes on this Monday to Friday plane. (Yes, there is a clean version) I’m stable, mobile and have lots of life left in me.  Okay, so now that we have that out of the way:  Because the Albuterol improved my lung function, (numbers) my Rheumatologist at UCLA recommended we try it because if it helps, it’s worth a try.

Albuterol is not my friend.  It helps me breathe better, but is counter productive because of the stimulant effect it has on my system.  I have a history of anxiety.  I used to get panic attacks so bad, the granulomas (sarcoidosis) in the lymph nodes in my chest would enlarge, resulting in restricted movement of my lungs because they could not expand.  It would happen without anxiety, but because of the right medication, my condition has stabilized. Like many autoimmune or chronic conditions, stress can cause a flare.  Sure, albuteral would improve my numbers, which would be helpful if I the side effects defeated the purpose of even taking it because of the anxiety from the stimulant effect it has on me.  Our solution to this quandary? Achieve our objective of open airways with the newer, more expensive treatment, titotropium bromide inhalation powder (brand name Spiriva).

For those of you who are not aware of the excellent healthcare equivalent to that of Dick Cheney’s: I am a 100% service connected veteran with Medicare.  That means my specialists at the Veteran’s Hospital,  consult with my specialists at UCLA because the specialists at the VA have no idea what to do with me.  They are great doctors, because if they don’t know the answer, they will find a way with a referral to a specialist outside the VA.  (Really, can you count on more than one finger how many  patients you know with scleroderma, sarcoidosis, pulmonary fibrosis who test positive for rheumatoid arthritis AND have a stable condition after 20 years (with meds)?- Me neither.)

Veteran’s can have specialists consult with specialists outside the VA Healthcare System, and because I qualify for medicare, my doctor’s visits to UCLA are 80% covered by Medicare.  Because I have no other insurance,  medicare approves many things without having to fail three times befroe getting the right treatment that’s more expensive.  Same with the VA.  The thing is, as our own advocates, we need to communicate with our doctors, encourage and by all means ask to go outside the formulary when it is necessary. (Don’t be willy-nilly about it.)  Good doctors will advocate on your behalf  to go outside the formulary  Restrictions, of they have the evidence that skipping formulary treatment  will avoid unnecessary complications.   This is where being your own best advocate, well read and have a great communication with your own medical team is priceless.  (Nerds. I guess I will have to write how to get there with as few breakdowns as possible.  -Okay, coming soon- I promise!)

Okay, so what started as an announcement, has turned into an update of my meds, ways to go outside the formulary and being your own best advocate.  I hope my update- okay let’s be honest, my rant has been helpful and maybe even sparked a few questions.  I hope you will ask questions, or leave comments at the end of this post.  I am most inspired to write by anyone with questions or comments.

Now, back to my original goal of this post; my announcement.  I will be attending the Body 2.0 conference in San Francisco October 7th as a Health Activist and contributor to WEGO Health.  Body 2.0 is a health and fitness expo for anyone interested in maintaining or  improving health and fitness.  So there you go.  We tool a long car trip to get here, but that’s what’s on the agenda this week and next.  preparation, travel, relaxation then health activism.  Stay tuned to keep up to date on what’s new in fitness & health, WEGO Health and how what a patient can benefit from a health and fitness expo.  We may be fighting for our lives, but learning what we can do to maintain health between battles or during, can benefit you and someone like me with multiple diagnoses like oh, I don’t know; scleroderma, sarcoidosis, pulmonary fibrosis, contracted hands, limited range of motion… Do I really need to keep going.  Just stay tuned, and if interested, visit WEGO Health if you would like to attend Body 2.0, test some products or learn from health activists.

To keep with the theme of fitness for Body 2.0, There’s a new version of Ice, Ice Baby for Zumba.
I thought you might enjoy Jim Carrey’s version from In Living Color 

 

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.

A Scleroderma Patient Walks Into A Doctor’s Office… And The Doctor Has Scleroderma

Edited 8/31/2012  I felt that my original post was a bit hard on the doctor.  I don’t mention him by name, but above all he is human and a fellow patient.  This experience is not just about me, but about me coping with the world around me.  Sometimes I do so in a way that seems funny to me, but can hurt others.  I  could not sleep tonight without editing  out my judgement of this doctor’s mental state.  I did not know him and although I disagreed with him strongly, I have a great deal of admiration of him because of his accomplishments.  He did what I could not do.  Have a career in medicine while living with scleroderma.  My original post criticized the doctor’s feelings about his own health.  He did not have to share his condition with me, but he did.  

“Obviously, you’re not a golfer.” ~ The Big Lebowski

In 1999, someone well intended city clerk got one number wrong my address.  Three months ago, the City of Murrieta decided it needed to be fixed.  It was a smooth transition, but not without hiccups.  A substitute mail carrier unfamiliar with my address issue, accidentally sent back my depression medication.  So on the day of my appointment this past Friday, I had been two days off my depression medication.   The VA is 41 miles from my house and I figured waiting an extra day wouldn’t hurt because I felt very stable.  That will be the last time I make that mistake.

I woke up feeling good.  I had time before my appointment to have a very productive morning.  I  found a parking spot right way at the VA Hospital and I was on time to my appointment.  I originally thought I had an appointment to see a podiatrist, but I was pleseantly surprised it was an appointment for Physical Medicine and Rehabilitation.

My Rheumatologist at UCLA recommends treatment to my Rheumatologist at the Veteran’s Hospital.  (Who by the way referred me to UCLA when he ran out of ideas in 2005.)  This is something named by the VA as managed care.  This is when a VA  doctor co-ordinates with another specialist outside the VA Health System.  It is helpful to Disabled Veterans who live far from Veteran’s Healthcare facilities and too many reasons to list.  (Click here for more info)

Because of the treatment prescribed by Dr. Furst at UCLA and the VA Healthcare System’s outstanding implementation of his recommendations to the letter, I have a stable condition.  (It took me 16 years to get here, so please don’t give up if it hasn’t been easy. )  Because of my stable condition thanks to treatment of scleroderma and sarcoidosis, my rheumatoligists at the VA Hospital agreed with me that this might be a great time to get me back into some OT to see if we can improve my finger mobility.  After fighting an OT for years about getting them to at least TRY, I had a rheumatologist who was going to order passive range of motion, if only for a short time because he agreed it was worth a try.  Needless to say, I was pretty excited.  This would be easy.  The physical medicine doctor would evaluate me and with my enthusiasm and rheumatologist’s recommendation, he or she would have no problem issuing the Occupational Therapist to at least TRY.  But alas, when the medical assistant led me into the doctor’s office, it felt like my hope had been thrown into the air like a clay pigeon and shot.

The door swung open and I could see the doctor had trouble walking.  I noticed what I thought to be symptoms of scleroderma.   It looked just like my thumb, which I had lost the top of in 1996.  His fingers had mobility, but he still typed with two fingers.  It could have been his style of typing.  I had no way of knowing.  He clearly did not recognize my visual symptoms of scleroderma.  I was afraid to ask him.  My chart said Lupus and not Scleroderma. (There’s a record glitch I need to fix, but thats for another post.)

I was a little encouraged.  I was happy to see he continued medical school despite his obvious medical hurdle.  Unfortunately, the more we spoke, the more I realized we might not be a good doctor/patient match.

It’s not that I don’t believe scleroderma patients would make good doctors.  I think they would make good doctors, but to be a good doctor, one must know the difference between empathy and projecting his or her situation on to another patient.  I perceived he was projecting his condition on to me and I was projecting my own condition right back.   Yes, he was the doctor, but he was prepared for a Lupus patient,not someone  with scleroderma.  For our purposes here, his name is Dr. S.

Dr. S began, “Oh, I see you have scleroderma.”

“Yes, since 1992.”  I replied.

“I had scleroderma.”

“Really? How long?”

“Seven years, but I don’t have it anymore.”

I didn’t even want to now why he thought he did not have scleroderma anymore.  This was my appointment and I could tell by his body language he was no longer thinking of what was best for me.  He started asking me about my surgeries as he sipped from a cup from McDonalds.  I also noted the smell of McDonald’s french fries and the McDonald’s bag next to the keyboard on his desk.  At this point, I thought about my issues with denial when I would eat things from fast food places and then wonder why I felt so swollen later. While I was taking note of what I perceived as his denial and poor eating habits, he was trying to help me with his own experiences with scleroderma.    Looking back, it seemed like a great big projection-fest.

He asked me about my diet.  I told him I maintained a high protein diet, drank protein shakes daily because it helped with my absorption problems.  Then he started to tell me how his scleroderma went away when he became a vegetarian.   I suddenly realized I picked the wrong week to be out of anti-depression medication.

The good news for this doctor was, that I have had enough meltdowns to know there are times not to have them.  He was clearly coping with a progressive, degenerating and soul sucking disease.  My care was important, but I was not in crisis and I have been doing this long enough to know how get to see another doctor to achieve my objective.  So, I sat and listened and refrained from commenting.  I will include some of my thoughts during our exchange, but I’m not going to waste your time with a string of “F” bombs.

Dr. S. began, “I had scleroderma for seven years.  I stopped eating meat and I don’t have it anymore.”

“This finger was bent like yours.” Dr. S. showed me his index finger with the tip missing and wiggled his finger and continued. “As soon as I stopped eating meat, my finger was fine.”  Then he bent his finger showing off his mobility.

“Oh and you should eat vegetables.  They will help you.”

I was about to use my “Hot Dog Down a Hallway” analogy about my digestive capabilities, but he insisted on continuing.

“Passive range of motion won’t work.  Just eat nothing without an eye and your range of motion will return, just like mine.”

I decided that trying to tell him otherwise would be a waste of my time.

“Thank you doc, I’ll try that.  Why don’t you just give me a referral to Occupational Therapy for some adaptive equipment.”  I told him.

I was happy something productive had come out of our appointment without any shouting or cursing.  I walked out of the office and headed straight to the Behavioral Health Department to handle the antidepressant issue.  It turned out, I was the cool cucumber I thought I was.

By the time I got to the Behavioral Health Department, I was doing some sort of weird hiccup noise trying to hold back my emotions.  I told the clerk I just needed to get a refill of my antidepressants.  I told her about the mail situation and as soon as I can get this started in the pharmacy, I will go into the bathroom and finish my emotional outburst.

The clerk behind the appointment desk said, “Stay right there.” and ran after a doctor who was obviously on her way home for the weekend.  They ran down a list of doctors between each other who were supposed to be on call that day.  When they ran out of names between them, the doctor who was about to leave looked at me very kindly and said, “Come with me.”

I thought I was appearing calm, but that involuntary squeaking noise that I kept making would not stop and started becoming more and more frequent.  Apparently, I was having a meltdown and suppressing it so well inside my head, the meltdown had taken on a life of its own and manifested itself outward.  Looking back, I’m a little impressed by my own body’s ability to cry out for help without my permission, but I digress.

The doctor took me into her office.  She sat down at her desk, pulled up my file and ordered an immediate renewal of my medication.  Then she stood up, looked me in the eyes and asked the 5150 questions.

“Are you suicidal?”

“No.” I replied.

“Are you homicidal?”  I paused briefly and considered a joke about the doctor I just saw, but being one wrong phrase away from a 72 hour hold,  I answered, “No.”

“I can’t let you leave like this.”  The doctor asked again,  ” Are you suicidal?”

“No, I just want to get this prescription going so I can go calm down while it’s being filled.  I promise, I’ll be fine.”

She walked me out of her office to the appointment desk to make the appointment.  I paused, then headed straight for the pharmacy and left the office.  By this time, I was just making a noise  I can only describe as a squeaking sound with every breath.  I had to get out of the Behavioral Health office and go back and make the appointment after I had calmed down, but first I needed to get the ball rolling for my meds.

I skipped the elevator and took the stairs to the first floor.  I just kept my eyes forward, moved quickly and made no eye contact with anyone.  I reached the pharmacy, took a number ticket and found a chair next to a wall behind a corner where I sat and waited for my number to be called.

The chair was broken.  The backing had been split open but because the chair was wedged into a corer, the wall worked fine and gave the chair a recliner “feel.”  I leaned my head to the right, resting it on the wall next to me.  It was not a completely private space, but I felt protected as I leaned back against the wall that was the side of a pharmacy pick up window, which was thankfully closed.  I closed my eyes and just listened as each number was called.  Then I felt a gentle touch on my hand.  I looked and it was like looking at an angel.  She had beautiful brown skin and and I could see the concern in her eyes.

“Are you okay?” The angel said.

I looked back at her and said, “Yes, I just need a moment.  It’s been one of those days.”

“Okay honey, if you need anything, I’m just right over there.”  She pointed behind me until I turned to see where she would be.  I could see her VA badge, she must have been staff, but like me, she held a ticket with a number.  She was staff and she was a veteran picking up a new prescription.

“Thank you for taking the time to ask me.  I really do appreciate it.  I’ll be okay.” and she thankfully returned to her seat.

And I really did appreciate it.  I was not looking for attention from anyone.  In fact, had I been there with someone I knew I would have made them wait in the car.  One of the reasons I prefer to be alone is because appointments can go wrong and although friends and family want to help, their feelings of frustration radiate so strongly, I can feel it.   It can make my task of staying focused on what needs to be done that much more difficult.  It doesn’t take long for me to resent their attempts to comfort me.  I feel like they are making it a bigger deal than it is.  They really are they are trying to help, but I don’t want to hear their ideas or see their worry.  That must sound awful to my friends and family, but I have been doing this so long, this stuff isn’t such a big deal to me.  But to those who love me, it doesn’t take much for them to worry.  I might feel the same way in their place.  Now back to last Friday’s adventure:

So, I eventually talked to the pharmacist to get my prescription going.  He told me it would be ready in fifteen minutes.  I walked straight to nearest bathroom, locked myself in a stall and cried for about two minutes.  I was doubled over and pretty sure people could hear me outside.  Then, as though by magic, I felt better.  The weight of the world was off my shoulders.  I stood up straight, took a deep breath and felt calm.  It was as though the anger had left my body.  By retreating to the bathroom, I gave myself permission to let out my feelings without holding back.  Those feelings left and one week later, I still feel as though I left my anger in that bathroom. I just released my anger to the universe.

As for my leaving the Behavioral Health Department, I returned to the appointment desk. I made sure the doctor who asked me the 5150 questions saw that I was okay. She smiled and nodded in approval as she passed me.  I made my appointment, picked up my prescription and headed home. It was time for The Big Lebowski, popcorn couch therapy.  Enjoy this Clip.

 

 

 

A Tremor In The Force

On August 7, 2012, there was a great tremor in the force and we lost Lexie,  aka @OneBloggerGirl, a fellow scleroderma patient.  She was 28 as of her blog info. I, like many of my friends on Twitter, only new her online.  I really have no words right now except that my thoughts and wishes for strength are with her friends and family.

Although we never met in person, I feel blessed to have known Lexie in this life and I know I will see her again in the next.  She lost her battle with Scleroderma at age 28.  Take a knee, say a prayer, send a wish to those she loved and honor her today with a moment to remember something she said to you and how she made you smile.  Visit her blog and read about her journey.  It was short, but her journey was one that made a difference in this life to me and so many.  My experience knowing her will not be something I will be letting let go.

Thank you Lexie.  It has been an honor.

My GI Jump Start: Scleroderma and GI Involvement

I go out of my way to avoid  talking about anything to do with the intestines, their activities and bizarre noises.  I might be the only person on the planet who doesn’t laugh when people make gas jokes.  I am more  willing to drop an “F” bomb like it’s nothing than  say the “F” word for gas, but if you have been reading my blog, you already know I have issues.  Just just add that one to the list or cross it off or send a memo to my psychiatrist, because  I’m going to do something that I have been avoiding for years.  I’m going to talk about my experience with scleroderma and my GI tract.  (It’s okay Mom, just get over to the fainting couch.)  Why so honest about by own experience?  Because of one simple statement by Dr. Furst, “Problems in the GI system with Scleroderma are not hopeless.”

Dr Furst  has been my rheumatologist since 2005 and he is a smart, positive and  inspiring person.  I was not surprised his tele-seminar about scleroderma and GI involvement  was easy to understand and packed with useful information.  What really struck home  with me was his statement about not being hopeless.  I know that statement to be a fact because there was a time when I had to jump start my GI tract movement with daily medication.

One day in 2005-ish, I was given a chicken sandwich with radioactive mayonnaise.  (It was delicious. UCLA Westwood/ Ronald Reagan, is in the top three of my hospital good food list.) As my food worked it’s  was through my digestive system, I would periodically go stand in front of some small nuclear device for an inner abdominal Kodak moment.  This was not my first trip to the gastero-entro-nuclear rodeo. I  took a similar test a  few years before  at the Veteran’s Hospital in San Diego.  For that test, I got to lay down and take an excellent nap after my radioactive spiked sandwich.  I suppose the test has evolved because this place was wise enough to keep me upright because of a hiatal hernia.  It  keeps my stomach open.  Yep, I’m a little teapot.  Tilt me over and stomach acid comes out.  (Second verse, same as the first!)

The test results had  shown my scleroderma was progressing nicely.  And by progressing nicely, I mean progressively hardening the muscle tissue in my digestive tract.  As Dr. First mentioned in his tele seminar, scleroderma starts at the beginning of the digestive  tract; the mouth and throat, and then moves it’s way on down.  That is how scleroderma changed my GI system.   Now, in addition to the esophageal dismotility,  I have delayed gastric emptying, slow motility of my  intestines and most likely an absorption problem thanks to Scleroderma.  My  body’s waste was not exiting in a timely manner.  In fact, it was barely leaving “the building.” at all.

Reglan is usually the treatment of choice for this condition, but because  I have major depression and anxiety disorder, reglan makes me climb the walls.  Dr. Getzig, a Gastroenterologist referred to me by Dr. Furst, also told me she felt my condition was serious enough to prescribe a stronger medication that required daily injections.  At the time, I thought it might be overkill.  I believed my plumbing was working  just fine.  Sure, I had to make frequent trips to the bathroom throughout the day in order to have something that resembled a bowel movement, but that’s normal, right? (Denial?  No, not me…)  I don’t know if anyone else experiences this, but when I adapt to the changes in my body, I start to believe they are normal.  That is, until I have a “normal” experience.

Of course, there was the usual fight with the insurance company because of formulary restrictions.  At the the time I had private insurance.  I was not using the Veteran’s Hospital as my primary care facility at the time.  After an annoying  fight with my insurance company and notes to the insurance company from both my rheumatologist and gastroenterologist,  the medication was delivered to me from their closet location: Florida.  Did I mention I live in California?  You know: Because the medication was less expensive from that pharmacy and the cost of shipping something refrigerated across a continent made it a real  money saver.  Did I mention it was available for pick up from the UCLA pharmacy if I wanted to pay cash?  I guess my insurance company knew a guy, who knew a guy, in Florida.

I feel silly describing this, but after the first few days on this medication, I lost a few pounds.  Things had been moving so slow before the medication, my intestinal  movement was nearly stopped, and I had not even realized it.  The symptoms had become “normal” to me.  And after a short time on the medication, I felt better overall.   I started to feel less pain and more energy.  I did loose weight rather quickly and confirmed what my GI doctor suspected, I had absorption problems.  She recommended I use a supplement like Ensure.  Ensure helped but eventually I found Isegenix.  It has digestive enzymes and I can really tell a difference if I use something without them.

After that, things got even better.  I was getting fewer impact and pressure sores on my fingers.  When I would bump into things with my hands, my skin would not rip open like tissue paper. The medication did more for me than get my digestive system going.  Not only was I was getting the nutrition I needed and my body was eliminating waste properly, I was ready to exercise.   I had told my nurse practitioner about my increase in energy and that I wanted to start exercising again.  I was never very athletic until I joined the Navy and was in great shape when I got out of the service, but after years of depression and constant pain, I stopped going to the gym and became very sedentary.  Vacuuming had become my work out and I had to rest after that.  But because I was feeling better, I wanted to try to exercise again.   She gave me the number to her Kundalini Yoga instructor and it changed my life.

I called the instructor before going to her class and we disused my limitations.  She worked with me in the class and helped me make accommodations.  Eventually, I started keeping up with the class. And then, I noticed another positive change.

A common result of scleroderma is the loss of the fat pads on the bottom of the feet.  Imagine walking on a pile of pointy rocks barefoot.  That was what it was like for me to walk barefoot in my own house.    I even had to wear flip flops in the shower and swim in waterproof sandals.  Then, one day at yoga class, I walked onto the hard floor from the carpet without noticing.  My instructor brought it to my attention.    It was a strange feeling.  Not just because I no longer felt the bones of my feet being pushed into the hard floor under the weight of my own body, I felt like I was making progress.  I had a new hope that some of the deformities scleroderma gave me, would somehow get better.  Getting my GI system working properly came with a gift with purchase.  Instead of lip gloss and perfume, it was fewer sores that healed faster, and the gift of sitting on the the beach and being able to wiggle my toes in the sand, something I thought I would never be able to do without pain.

Then, something amazing happened.  I got up one morning and had a bowel movement BEFORE my injection.  I was going on my own.  I called my doctor and he told me to watch it closely, but if I was able to have a bowel movement on my own, I could stop the injections.  And that was it.

When I began taking medication for my motility, I was certain it would be for the rest of my life.  Sure, I do have to maintain a healthy diet, but does’t everyone? What I thought was a little much turned out to be the drastic measure I needed to help my whole body, not just my GI System.    Years later,  Scleroderma continues to progress throughout my body, but because of the right medications for me, it is doing it at a very slow pace.  It is up to me to do what I can to keep myself healthy with healthy food and exercise.  Yes, I do eat junk food every now and then, but it’s not slipping up.  I eat what I want in moderation and do it wisely.  I will do everything I can to keep my GI system moving, but if it stops again I do know it is not hopeless- bit that’s no free pass to eat processed food and blocks of cheese.

Scleroderma is overwhelming.  The symptoms are different for everyone but there are so many treatments available and so many treatments on the way, I remain hopeful  for a cure in m lifetime.

For more information and some great resources, please visit: The Scleroderma Research Foundation The Scleroderma Foundation Bounce to a Cure Scleroderma Blog 

Scleroderma, Depression and the Day I Was The Scream

Scleroderma changed my body, I believed accepting these changes, meant I was accepting defeat.  I was scared of what would happen once I believed these changes were happening. What then?  But the changes happened no matter what I belived.  I fought acceptance.  My brain answered this fight with depression.  I stopped eating.  I didn’t even realized I had stopped eating.  I would feel hunger and allow myself to feel it and push it aside because it eventually went away.  The hunger pains distracted me from my body and I learned to control them.  That was pain I could set aside.  Pain that I could stop.  Pain I could control was just the fix a control freak like me thought I needed.  It wasn’t until during a trip to the Museum of National History in Chicago, when  I climbed on a scale fully clothed, saw the needle stop at 96 lbs and noticed a problem.  But like my hunger pain, I pushed my weight problem aside.

That did not last.  I couldn’t bend my wrists.  My arms stopped swinging when I walked and my elbows remained bent.   My once beautiful hands were replaced by curled up fists. I wanted  to extend my fingers with ease and unconsciously talk with my hands.  I longed to paint my fingernails a funky color and wiggle them in delight.

I had firmly rooted my view in denial and once I opened my eyes,  it was so much to take in. I was overwhelmed. Eventually, I stopped leaving the house alone.  I avoided friends and family.  I missed baby showers, birthdays and holidays.    I would go to the store with my ex-husband but remain in the car while he would shop.  He knew I wasn’t eating.  I wasn’t consciously starving myself, I would just take a few bites of a meal, play with my food a bit and then clear my plate when whoever was at the table finished eating.  Eventually, my ex-husband would sit at the table until I would finish everything on my plate, but he could only do that one meal a day.  At the time, he worked nights.  While he was at work, I would try doing things around the house, but I would give in to pain and what I can only call sorrow.   He often came home to find what used to be his wife curled up on the bed under the covers.  A lump, illuminated by the television and beneath the covers and dancing lights my only thought was, “Please, make it stop.”

Little did I know at the time, I was making it stop by giving up.  I don’t remember what got me in the car the day I drove myself to the psychology department at the San Diego Veteran’s Hospital.  It was over 12 years ago.  I had made that drive countless times from Temecula to La Jolla, it is all a blur.  I just remember waiting to be seen, the feel of the hunger pains, feelings of  madness and confusion, the walk from the elevator to the office window, the pattern on the chair cushions, a large screen TV with a chyron crawl that seemed so new to me.  It was 2000.  Don’t ask me what month.  I was called back through the front window.  A nurse met me and took me to a small room.  I sat in chair while the nurse struggled to get a blood pressure cuff closed around my tiny arm.  He weighed me and asked me if I felt faint.  I remember carpet with maroon tones that was frayed when it met newly painted walls.

Back to the waiting room, chairs, TV, men sitting down and then leaving.  There were no other females.  Then I heard my name, “Mr. Vasquez?”

I got up slowly to an apology I had become accustomed to hearing.  Being called “Mr” at the VA was a normal occurrence at that time.  I was brought  into a larger room with two psychiatrists.  They explained to me there was a lot of walk-ins and apologized for not seeing me in an office.  I looked around and saw what looked like some kind of classroom.   I had been seated in a wooden chair next to a a table.  One doctor next to me, the other on the other side of the table.  In the middle of us on the table table lay my thick medical record and a clip board with a copy of a depression test I forgot I had taken while waiting.

One of the psychiatrists explained his  job was to assess if I was a danger to myself or others.  I knew the routine, I had done similar assessments in practice, but this time, I was the real patient.  I was no client or student in a fishbowl exercise in psychology class.  There was something wrong with my head and I felt it.  The only way I know how describe it now is my head felt disconnected from my body because my body would not do what I wanted t to do.

I don’t remember the doctor’s  first question.  I  just remember my reply, “Please make it stop.”

Then the conversation continued something like this:

“Do you want to hurt yourself or others, Karen?”

“Please, make it stop.”

“Do you think about dying?”

“Just make it stop, please.”

“Karen, do you want to die?”

“No, just make it stop.”

“Make what stop?”

“Scleroderma.  Make it stop.  Please make it stop.”

And then I felt a tug in the back of my throat and started sobbing.  Between sobs, I sensed a conversation between the two doctors.  I remember one handing me tissue while one left and returned with a woman.  She placed  her hand on my  back and attempted  to console me.  I sensed more conversation.  I tried to speak but there was no sound.  I cried with no noise.  The tug in the back of my throat turned into pain.   Pain that I know so well I can feel it as I am typing these words.   It felt like a hand was reaching up my throat and gripping the back of my tongue.  I will never forget the pain or what I became.  I tried to speak and nothing came out.  I felt my voice with my body, but only silence came from my mouth.  I felt rubbery, like I was turning inside out.  I had become The Scream,  like the  painting.  

I don’t know how long I sat or remember putting my hands over my eyes, but when I looked up, the doctors had gone.  The woman remained.   The feeling in my throat was gone.  Then I found myself hugging a complete stranger.  Once I let go of this poor woman from what was probably an awkward moment, she gave me some water and more tissue.  I felt calm.  I felt relief and I had no idea why.  She gently guided me with her hand on my back me to her office using a route that avoided the waiting room.   I was thankful for the privacy.  She led me to a room with no windows, but plants.  Plants that appeared to thrive under florescent lights and their willingness to thrive under those lights comforted me.

She had introduced herself to me as my counselor. I could finally understand what she was telling me.  I don’t remember the exact words, I understand it to be this:  I had become so overcome with grief from the loss of use of my hands from scleroderma, my brain was beginning to shut my body down.  She told me I had major depression and severe anxiety.    She made an appointment for counseling.    The degrees on her wall told me she had a phD.  I would be back to see her in two days.  Then she brought me to the pharmacists office.

I had been to the pharmacy many times at this VA Hospital and met with pharmacists at a window before, but this pharmacist  was different.   I don’t remember his name.  He was very tall and had dark black hair.  His demeanor made me feel comfortable in his presence.  He seemed excited I had my degree in psychology.  I was sure why, because my knowledge compared to his education, I was like a second grader. He was a Pharmacologist with a phD in neuroscience.  This was to be the first of our many meetings.  He told me he would be following my progress closely.

I had assumed my depression was temporary, just like I had believed my scleroderma was.  I had been told for years that scleroderma is a progressive disease and that my body would change.  I heard the words, but I never believed them until I met this man with a messy desk and a working antique Mickey Mouse phone that seemed to float above the clutter.

His explanation went something like this, “Your brain has responded to the progression of scleroderma and has started the process of shutting your  body down.  It’s probably why you no longer feel hungry.”  He was right, I was no longer feeling hungry.

He continued, “Depression is not just a feeling, it is a physiological change in your brain and your brain has stopped producing a certain type of neurotransmitter.  You will most likely need medication for the rest of your life.  This is not your fault.  It’s a natural reaction.  You are 29 years old and you have been through more than most 50 year olds.  If you did not  have some kind of reaction, I would be worried, but I am going to keep my eye on your medication doses to make sure they are helping you.”

And watch me, he did.  I remember spending more time in his office than my counselor’s.  We talked about synapses and receptors.  It was like being personally tutored about my own depression.  For some reason, I was more interested in the physiological function than anything.  It kept me talking to my counselor and over time, gave me a sense of empowerment.  I had a truckload of issues to work out, but what I had learned from that day is that scleroderma might take me down, but depression would probably kill me first if I ever let it get so out of control again.

Now, twelve years later, I still take depression and anxiety medication.  Based on my own experience through the years I do believe in the mind/body connection.  When I have a bout with depression; my symptoms get worse, my pain tolerance is lower and my skin gets tighter.  Depression with a chronic illness like scleroderma does not go away.  Symptoms of depression come  and go as the disease progresses.  Because of the help I received that day I became The Scream, I have the ability to recognize unhealthy depression, anxiety behavior and symptoms so that I can get help when I need it.  The day I became The Scream was not the last time I have been a Scream and I am sure I will have days like that to come.  I don’t know what is to come, but since that day I have survived countless hospital stays, near death in childbirth; pulmonary fibrosis, sarcoidosis and rheumatoid arthritis diagnoses in addition to scleroderma and a divorce.  All that in addition to life’s normal transitions like loosing family members, changing jobs or loosing one.  Scleroderma is a part of my life, but it is not my life.

Of course I wish it away.  I want all of  it to stop but there is no cure at this time and it is not going to stop.  Its okay to wish it away.  It’s just not okay to ignore it or let scleroderma, sarcoidosis, rheumatoid arthritis or whatever your diagnosis consume you.  If you are still reading this, I still wish I could do a Jedi Mind trick and make your illness and it’s symptoms stop, but no one can.  I can tell you it’s going to be okay. Not because you are going to get better.  It’s going to be okay because you, the reader are going to take care of yourself, watch for signs of depression and get treatment when symptoms show up.  Taking care of ourselves makes us powerful and it is the only thing all humans have control over, chronic illness or not.

So  I do my diagnostic tests and go to my doctor’s appointments.  I take care of my health like it’s a full time job.  My life depends on it.

 

Because I Can

So, after further review of the budget, I had to stop maid service.  It takes e a very long time to clean, but  I decided if I tackle one cleaning job a day, I can stay on top of things.  Yes, it is tough and time consuming, but only if I do it all in one day.  I can’t believe I didn’t think of this sooner.  I could have saved so much money!  So today, I took on my first task; my closet and my bathroom.

I used to sit and dread cleaning.  Not today.  Just knowing I was only doing my closet and bathroom made my objective possible.  I did it.  I still felt energized, so I  moved on to the laundry, but I didn’t get too involved.  See, my old behavior would have been to keep going until I hurt myself or collapsed into a sweaty heap on my bed at the end of doing all my chores at once.  That sounds like not such a bad thing, but that kind of behavior  would result in the following day being immobile, in pain and grumpy.  So, maybe my other bathroom is a mess, but that can wait until tomorrow.  I can spend an hour or two, take my time and have the rest of the day to have fun.

Yes, I can do this.  It will result in more pedicures and possibly a vacation.  A real vacation, not a trip to a relative’s house. I mean a real vacation.  Yes, I want to stay somewhere I can swim to the bar.  Just because I can’t drink doesn’t mean I should give up on my dream.

Maybe not exactly this house sitting gig, but it does get me in the mood. Click here to enjoy  Someplace tropical where I have to swim to the bar, with fewer banana hammocks and more board shorts.

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.