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.

 

 

Dating While Chronically Ill Is Not A Crime

Day 27 of NHPBM

I Bet You Didn’t Know…

Being single and 40 is no picnic.  Remember when you were married or in a committed relationship and you used to chuckle about your single friends using online dating sites?  How’s that Humble Pie taste now, fellow Bitches?

My slice of humble pie tastes like lentils.  Sure, it’s healthy, but until I got the recipe right, it tasted like crap.

What?  Online dating is good for me?  After conducting what I can only describe as “research”, the answer is, yes.

Now, I’m not suggesting you ask dates to doctors appointments.  There comes a time (hopefully) during a chronic illness when things slow down, stabilize and we’re ready to be social creatures again.  Don’t loose faith, it can happen.  It happened to me and I should have been dead years ago.

When I was newly single in 2009, I had completely lost my confidence and self esteem and I was feeling miserable.  My ex-husband suggested I try online dating. I thought: If he could be successful, how hard could it be?   Ignorance is bliss and I am glad I did try it.  I learned something from every person I have met.  If I had to do it over again, I would do it again to gain the knowledge and self confidence I now have because of it.

I encourage anyone considering online dating to try it.  Everyone’s experience is different, but for me my biggest lesson was: I don’t have to settle for anything or anyone. And, if you let them, people will show you exactly who they are without getting naked first.  For me, it was the spirit of research that kept me going.   My efforts were rewarded with good old fashioned learnin’.

So, The Adventure Began

After posting what I thought was a confident and stellar profile, I was flattered by all the responses, winks and messages.  Looking back, I can see now my profile was screaming, “Fresh Meat.”

After lots of dates and a few adventures, I will talk about some interesting characters I met, learned from and awarded nicknames.  

After a few dates, one guy added to his profile, “50 Shades of Grey is my life story.”   He is  forever known as 50 Shades.  Had I not met him, I would have never known how truly awful the book was because I looked it up on Wikipedia where it gave away the plot.  I am forever grateful to him because I will never have to read it to know what a true piece of shit story that is.  Doesn’t anyone just watch porn?    No one should be subjected to such a lame plot and cheesy dialogue without background music.  Bow-chica-bow-now really would add something to the story.  Thank you, 50 Shades.  You have saved me so much time.

I would be remiss not to mention I have been asked if I would participate in ‘panty hose spanking’.  It’s exactly what you think it is.  DON’T Google it.  You cannot un-see it.  Well, unless you are into that.   I don’t want to judge, it’s just not my thing.

One guy I dated exchanged my crappy couches and $100 for his super nice sectional.  I love this couch.  I have learned I love the shape, but will eventually get the same model in leather instead of microfiber.   Again, a valuable learning experience.  Things had to end  after he called my mother “sexy pants”.  He is affectionately referred to as, “Couch Guy”.

I met one guy for an Angels game.  He was a season ticket holder, and we had great seats.  In the 7th inning, I don’t even remember how we got to the topic- but here’s how the conversation started:  He said, “You know what I hate about Anaheim?  Mexicans.”

Yes, he did say that while sitting in Angels Stadium in Anaheim, California.

Now, my first instinct was to pour my beer on his head and leave, but he said it loud enough for those around us to hear and it didn’t seem to bother him.  The inner research psychologist kicked in, and my curiosity was peaked.  So, I placed my elbows on the arm rest in his direction, rested my chin in my hands in classic Jon Steward fashion.  Wide-eyed, smiling  and in my best Jon Stewart voice said, “Dooo go on!”

I let him continue until I could no longer stand it.  I put my hand up to interrupt him and said, “You do know my last name is Vasquez, right?”  And then, he went for the Asshat Racisit-Trifecta:

1. I know, but I’m not talking about you.
2. I have Mexican friends.
3. I have dated a Mexican.

The date didn’t totally suck, I mentioned it we had great seats…

I learned from him to put Caucasian as my race.  It has helped me filter out the bigots like nothing else.  I look white and it’s a great way to know what people really think sometimes.    For the record, I have no idea what I would be considered racially.  I like to skip the question, just like my Aunt Carmen.  To paraphrase her, “We’re human.  Who gives a shit?”  She is one brilliant woman.

Dating While Chronically Ill Is Not a Crime

At first, I thought I needed to disclose my health in my profile, like some warning label.  I did and I got lots of prayers, offers to be brought to church, but no dates.  It’s a bad idea. A chronic illness is not a death sentence and we certainly do not need to come with a warning.  More and more of us with scleroderma and sarcoidosis are surviving, adapting and overcoming.  Just because we need to maintain our health with meds or were are disfigured from the damage, does not mean we are supposed to stay home.  People take high blood pressure meds, cholesterol controlling meds and God only knows what kind of graveyard they’re tending in their closets at home.   We all have something to deal with and it’s just life.  I know it’s not the same, but in the big picture, we are all going to die of something

 And yes, I have experienced a lunch date where the conversation turned in, “Sooo, can your hands be fixed?”  

Poor guy couldn’t take his eyes off my hands.  When I dropped him off, I’m not sure he flung open the door and ran because he was really late, or I had just frightened the shit out of him.  I’ll never know and I don’t  care.

And yes, having a medical condition was a deal breaker for one guy.  At least that’s what he told me.  He was Mormon, so he may not have wanted to admit he was looking for someone who would be willing to convert.  The truth is, whether you have a chronic condition or not, you will meet people you would not want to see again and sometimes, it hurts.  Be thankful for the learning experience and you will recover and be stronger for it.

A Happy Ending

Happy endings are for fairy tales, but every now and then, I meet a nice guy.  It’s all about odds.  The more you get out or talk to someone else, the odds are higher you will meet someone who does not have their picture in the dictionary under the word, “douchebag”.  My best date was was with a guy who bugged me until I met him for coffee.  I did not mention a word about my health before meeting him.  When we did meet, I offered my goofy hand out to shake and it was not even

an issue.  Not to mention, he was much cuter in person than in his picture.  We later ended up in a bar- well lit mind you, and had a great time. Yes, the nice guys are rare, but that’s kind of the point.  So, if you’re ready and a little freaked out about online dating, get out there.  Be safe, watch for red flags, try panty hose spanking- if that’s what you’re into, but most of all, have fun.  If it’s not fun, step away from the computer and give yourself some “me” time.  It’s not required to find someone and it certainly should not be a “job”.  There are no guarantees, there may be disappointment, but like anything worth having it does take a little work.  Keep it fun & stay safe out there!

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

 

 

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.

 

 

 

My Not Exactly 14 Hour Lipstick Moment

Do you ever see those 14 hour lipstick commercials?  You know, beautiful young women in their twenties doing something professional like rolling out blue prints, dressed in a curve hugging dress, eating pot stickers with chopsticks right out of the take-out box for lunch.  I know what you’re thinking.  You’re thinking, Karen, that’s no commercial- that was yesterday.  Well, not for me.  The other day,  I went out for coffee wearing a novelty men’s t-shirt.  Today, I am wearing another men’s novelty t-shirt and tomorrow, you guessed it- another men’s novelty t-shirt.  See the pattern?  Oh, I still wear my lipstick.  Just no curve fitting dress.  Tomorrow, lunch will be a protein bar or PB&J.  When did this happen?  When did I become this men’s t-shirt, make-up-yoga-pants-wearing Hobbit?  I sat on my couch tonight watching a 14 hour lipstick commercial during The Big Bang Theory wondering, “Did I even HAVE a lipstick moment?”

I guess that was supposed to happen during my twenties.  Of course, I look back and I remember my twenties full of doctor’s appointments and tests.  Sometimes, I feel like scleroderma robbed me of my “Lipstick Moment”.  But wait, I did something else in my twenties.  There was a time before scleroderma and it did involve wearing all white to work sometimes.  When I was 22, I was in the Navy (yes this video does make me feel a little badass, I would have chosen better music).   I kind of had my “14 hour lipstick” moment. I probably had more than one, but the one I remember most vividly happened not in a big building with blue prints in a tight fitting dress.  It happened on board a ship, somewhere in the Indian Ocean.   I wasn’t wearing white at the time, I was wearing my working blues.  Back then it was bell bottoms and a light blue shirt, often referred to as prison couture.

The galley just got the soft serve ice cream machine working, or maybe it always worked and I never noticed it.  It does’t matter.  My friend Samantha and I were sitting at a table enjoying our ice cream cones.  Now, keep in mind we were out to sea on a ship and that’s a very lonely place, so please don’t judge the subjects I talk about.  Sometimes we all have a moment where we can’t stop looking.   Anyway, Sam and I  were enjoying our ice cream cones at a table in the ship’s galley.  It was very hot and our cones were melting fast.  I had almost finished the top of my cone, when I looked up from our conversation.   Every male in my line of site was staring at us.  Apparently, eating an ice cream cone is interesting to men.  I made a motion to Sam, slapped her on the shoulder and pointed to the nearest male.  We both looked at him.  He looked frightened and turned bright red.  Sam and I looked at each other and laughed.  The galley became noisy again.  We finished our cones and headed back to work.

My life today is far from a supper-model-14-hour-lipstick moment.  Or is it?  I did get hit on while wearing my mens novelty t-shirt to coffee the other day.  Maybe it was the lipstick or my snappy wit.   Maybe I’m just as hot as I was at twenty two.  Maybe at 41 my wisdom

woman with contracted hands applying lipstick.
Circa 2003 at 5 months pregnant.

and intelligence adds to my hotness.  And maybe ducks will fly out of my belly button.  Who cares?  I still got hit on while wearing a men’s novelty t-shirt and yoga pants and what I think look like goofy hands.  I’ve still got it.  We all do. Sometimes we just need to be reminded, more importantly, we need to remind ourselves.  I rarely feel like the hot chic, but my inner hot chick is there and it shows itself.  Your hot chick or hot guy is still in there.  Don’t neglect him/her and let him/her out every now and then. And remember, sometimes our hot chick/dude is showing whether we know it or not.  Now dance. 

 

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.

Scleroderma on the Fly: Episode1

This is a post contains a link to my UTube Channel for my video series:

Scleroderma on the Fly: Episode 1. What is Scleroderma?

Scleroderma on the Fly.

Please click here to watch Episode 1 “What is Scleroderma?” 

 

I mention my secondary diagnosis of Sarcoidosis.

To clairify: having more than one autoimmune disease is not uncommon.  To submit questions for future episodes, please go to the contact section and submit questions, tweet them to me or post on Face Book.  Please subscribe to my UTube channel to be notified of new episodes.

Thank you for watching and sharing this video.  I hope you will find the information easy to understand and easy to talk about to others.  My goal with this series is to teach all interested to be able to talk about Scleroderma  without receiving glazed over blank stares.

Please give me feed back if I am unclear about any topic.  No question or topic is off limits.