June is Scleroderma Awareness Month

 

a·ware·ness

əˈwernəs/

noun
  1. knowledge or perception of a situation or fact.
    “we need to raise public awareness of the issue”
    • concern about and well-informed interest in a particular situation or development.
      “a growing environmental awareness” – GOOGLE

There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about.  Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.

Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising.  Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.

People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine.  We all have obstacles to overcome.  They are as different as night and day, but they are obstacles.  Of course people are as strong as I am.  Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.

It has been said to me that, “at least you don’t have cancer.”  Maybe.  Maybe not.  There are treatments for cancer that are already mainstream.  There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses.  For example:  Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression.  The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.

You and I are both aware of scleroderma.  It’s not enough to wear teal and do a fundraiser, but it helps.  Non-profit organizations that conduct research compete with other non-profits.  Not out right, but think about it; they are competing.  People donate money to a campaign they care about.  If it’s not someone they love, those organizations have to advertise to get donations.  It’s not good or bad, it just is.  I am more likely to donate to scleroderma research than cancer.  I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I.  Just like everyone else, I donate to causes that matter to me.  Yet I can still become absolutely furious in October because the world turns pink.  The money used for merchandise could be put towards research and assistant programs.  But without merchandise, people won’t donate.  We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something.  I do it.  You do it.  It’s very American.

Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here.  That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon.  I hate awareness, but without it, I’d be dead.  Awareness inspires action.  Please do something this month to teach others about scleroderma.  Thank you. -K

 

 

 

I’d Rather Have Chlamydia.

 

The week of October 5, 2014, I had yet another stay in a veteran’s hospital with another weird diagnosis.   It’s only a matter of time before I recognize  my case in an edition of Scientific American’s Mystery Diagnosis article.

Monday was busy, and Tuesday ended with a trip to the ER, presenting with neck pain and difficulty swallowing.  My neck felt like I had whiplash.  I hadn’t done anything to injure myself, and wrote it off as a strained neck from to much driving.  But something wasn’t consistent with pulled neck muscle.  It was like a bad episode of Sesame Street’s “Which One of These Things is Not Like The Other?”

I assumed it to was  allergies.  Which is stupid, because I knew better.  After twenty years as a medial anomaly, I just  knew better.  But I didn’t think anything of it until my cousin asked if I had any flu-like symptoms.

So I packed a bag, got in my car and drove myself to the ER.  I always drive myself because I hate taking people with me.  I end up feeling like I need to make them feel comfortable.  I get those worried looks, and I hate them.  It’s not their fault I view my ER visits as somewhat routine.  Mostly because I never let things get so far out of hand,  I couldn’t drive there.  I’d rather go to the ER and ‘cry wolf’, than ‘Suck it up, Buttercup’ until my condition becomes catastrophic.  I’m proactive that way, I guess.

I did notify my family I was going, which I hate to do, but I am also thankful to live far enough away they can’t just jump in the car and come to the ER.   Not because I want to leave them out, I just hate not having answers to their questions.  I view ER visits as fact-finding missions, in addition to emergency care.  I’ve been doing this 20 years now, and a trip to the ER is just normal to me.  Not because I have fallen through cracks in the system.  It’s because whatever the complication,  waiting for a doctor’s appointment in a specialist clinic, held once a week, is usually  not an option.

My greatest fear of living in Long Beach since the beginning of the 2014,  is that things might get so bad, an ambulance might be needed one day, and I would not be taken to a facility that is equipped with doctors who know how to treat a patient with scleroderma and sarcoidosis.  Instead, I would be taken to the Long Beach VA, for another botched diagnosis.

The  ER in West LA, appeared to have their act together.  Well, except that  ER nurse profiling me as a drug addict.  I made sure to tell his supervisors, but that’s a whole other post.

Back to the ER:  First, using a CT scan with contrast, observations of signs and notation of symptom,  I was diagnosed with a retro pharyngeal infection.  well, sort of- it was worst case, but there were missing symptoms specifically a fever and evidence of an abscess.  Luckily, I was fortunate enough to work with a team of doctors who were interested in answers, and getting them correct.  So, they followed the evidence.

I thought when diagnosed wasn’t  as bad as a progression in scleroderma or sarcoidosis.  Of course, it is a very serious infection that could be fatal if not treated in time.  But the doctors were a little puzzled.  I had swelling, but no fever and no sign of an abscess, which are both criteria for diagnosis.  I was still treated with antibiotics until the diagnosis could be proven otherwise.

I was seen by an ENT, who then requested a second CT scan with contrast, and later, that diagnosis was changed, thanks to the very capable rheumatology department and lucky me, my attending doctor in the hospital was a rheumatologist.  I think she is also the chief of rheumatology.  The diagnosis was changed to calcium hydroxyapatite deposition in the periarticular soft tissues of my neck.  In English:  Calcinosis in my neck tissue, specifically the tendons.

And there was a treatment.  And of course when the in-patient doctor told me the diagnosis, I of course asked to have the infection instead, because to me, anything scleroderma related in a new region of my body, no matter how treatable, in my mind is always the worst possible outcome.  Of course, I had a much better prognosis with calcinosis in my neck than an infection in my neck, but it was scleroderma and it took hours to get my head out of my butt over it.  (Seriously, what kind of an idiot would rather have an infection that a treatable symptom of a chronic illness?  Oh, right.  I’m that kind of idiot.) 

So I was given medication to break apart the calcinosis, kept on antibiotics just in case and my condition improved in about thirty-six hours.  I was sent home.  The very next day, I went to my high school reunion and had a blast.

And here I am seven days after discharge, feeling completely recovered, and packing my things to move to LA.  I wish I could stay in Long beach, but I cannot be guaranteed continuity of care at the Long Beach VA

Sometimes, I would like to have a gentler, familiar diagnosis instead of scleroderma.  A diagnosis other people have heard of,  like chlamydia.  At least that can be treated.  And when I tell people what I have, I would not have to explain it.  Everyone has heard of chlamydia, and that can be cured.

For More information:

Scleroderma Research Foundation 

Scleroderma Foundation

National Institute of Health

 

Laughter May Be Best Medicine for Scleroderma

Okay, maybe not the best, but it helps.

I started writing this blog in 2009.  If you have been along for the ride, you have seen my writing evolve from sub-par to adequate.  Now, I’m doing stand-up comedy and in no way should be promoting it, but I am telling people where I will be performing.  Why?  Because I talk about scleroderma.  I also posted this because I want to show other scleroderma patients there is hope, but you have to fight.  I did.  And now I have this warped sense of humor.  (I had the warped sense of humor before, but now I do it with more words of Latin and Greek origin.)

Clip from my performance at The World Famous Comedy Store, June 10, 2014

 

Look, I never wanted to be a “scleroderma comedian”, but with my hands, it’s really hard not to talk about it.  People have questions, and merely my medication gets a laugh because it’s so hard to believe.  But this has to start somewhere, and why not with something that creates laughter.

I don’t think having scleroderma is funny.  In fact, scleroderma is very scary to patients and those who love them.  But the mistakes I have made personally, and ways I cope with it, are funny to me.  So, I’m going to get people to laugh, and learn something, as well as show the world that with educated doctors and medical practitioners who will fight along side their patients, patients can survive.  Nothing will ever trump a cure, but for now, I’m going to laugh at what scares me.

Thursday, July 10, I will be at Aces in Murrieta, California, for open mic.  (Yes, that Murrieta.)

Saturday, July 19, I will be performing at Hot Java’s Deaf Comedy Jam in Long Beach, California.  

Scleroderma Awareness Month

 

Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and all of this needs funding.  All of the activities I just listed, are supported by donations, grants and volunteers.  Every June, we unite to support the research, education and patient assistance.  We share memes, we wear teal, write letters to the editor and/or  we gather in parks and walk to raise funds for research of scleroderma.

So if you stop reading this post here, you have read the most important part of it.  Thank you 🙂

I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine.  I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.

Back to being sick and tired of writing about being sick and tired…  So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases.  Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured.  In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients.  I look forward stories of hope, memorium, and humor where we can find it.

You might be thinking two questions:  ”

1.  Karen, how can I possibly laugh at a time like this?

2.  Are you high?

The answer to your first question is that at the most serious of times, I have found a way to find humor.  Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next.  It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present.  On the science side, laughter also releases endorphins, and helps our brain cope with situations.  Laugh at what scares you.  It will only make you stronger.  (Go ahead, research how laughter is the best medicine.  Millions of Reader’s Digest readers can’t be wrong.)

My answer to your second question:  No, I’m not high. (As far as you know.)

I do mean it when I say I am sick of scleroderma awareness.  There are great organization making breakthroughs in treatment, and clues to a cure.  If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure.  Our lives depend on it.  Thank you.

 

Scleroderma Awareness Month is Over…

 

 

As a scleroderma patient, I feel this would be my time to list my wishes.  Of course World Scleroderma Awareness Day isn’t Christmas.  But the last hour in the month of Scleroderma Awareness Month is a great time to make requests.   You know how we tell our kids to make a list for Santa, the Great Pumpkin or “NAME HERE”. Because even if there is no Santa, the Great Pumpkin or “NAME HERE”, there is always an eager parent or loved one looking to fulfill at least one wish of many, on a list of wishes.  Right now there are researchers working on a cure to fulfill at least one of my wishes.  And there are doctors trying to fulfill the wishes of patients around the world.   Yes, I am equating researchers and those helping them to Santa’s Elves.  They do they work they do because someone, somewhere said, “I wish I could help.”

So, how about the Scleroderma Giraffe?  Yes, my “NAME HERE”,  being will be to the Scleroderma Giraffe.  And instead of elves, the Scleroderma Giraffe has gnomes.  (What?  You don’t like the Scleroderma Giraffe?  Write your own damn blog.)

Dear Scleroderma Giraffe,

First, I would like to say that it is really cool that you are able to have your head so high, then bring it down low to drink water, then bring it back up without passing out.   That is really cool.

I have a lot to ask, so I’ve narrowed it down to two.

1.  You know I’m going to ask for a cure.  (I had to ask.)  Click here for the Peter Griffin Argument. 

2.  Okay, how about some more of those breakthroughs in research?  Thanks for the break throughs so far, and I look forward to celebrating more.

Well, I think that covers it for now.  I could  go on for days with requests, but I would really like it if you paid less attention to what I’m writing and get back to helping the gnomes with research.  I know you are able to read faster  because of your giraffe magic, but there are lots of patients who can’t wait one extra minute.

Sincerely,

Karen

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.  

Krav Maga, Yoga, Scleroderma, Sarcoidosis and Feeling Good

I have returned to Krav Maga Classes.  I kept putting it off because I was so busy, I felt it would be too much.  Boy, was I wrong. I went back to my first class two weeks ago and felt energized and empowered after my class.  I am working to make more time for it, but easing back into it is the best choice for me.  I love how my instructors help me adapt, and do things I never thought possible.     Another thng I like about the school I do attend is their emphasis on self discipline, respect for others and violence as a last resort.  I feel balance balance between my inner warrior and facing the world calmly.

I also do yoga at home using DVD’s.  I plan to  join a local yoga collective and attend classes once my budget is squared away.  Today, I will do a short yoga DVD.  I need to work on m deep breathing.  Not exercising January and February while I moved has made a difference in my lung capacity.  I can’t take those deep breaths.  After evaluation and approval by my doctors to do exercise, I have experienced the ups and downs of not staying consistent.  I don’t just feel the flab.  The muscles in my chest become stiff and restrict the expansion of my lungs.  So, there’s that.  And here I am again back at square three.  Square one was when I could barely walk, so I can move easily, Square 2 was finding things I like to do to exercise.  Now, at Square 3, it’s time to make these activities consistent.  I have such commitment issues, bit I am very optimistic about this one.

Not to mention that if I stick with this I will look fabulous this summer in a bikini top and board shorts!  Yeah, I’ll post pictures in June- maybe to help raise awareness.  If Curvy Girls can get 1.9 million “likes” on Facebook, I can do something with this potentially hot body.  Look, the world is filled with beautiful women of all shapes and sizes.  When I die, I plan to donate parts of my body to scleroderma and sarcoidosis research.  While I’m still here and looking good on the outside, why not use my body to raise awareness?  Look out Curvy Girls!

Have a great day!

For more information about scleroderma and how you can help research for a cure, or raise awareness, here are some helpful links:

The Scleroderma Research Foundation

Bounce to a Cure

Beyond The Mat: Divine Order.  A post form Temecula Yoga Collective’s Blog about how we are all connected.  Excellent post!

Caring Hands Sarcoidosis Network of Michigan

Supportive Patient Communities:

Treatment Diaries

Inspire

Art by Chris Dean, of Life Your Way

See her comics at Totally Random Shuffle

Scleroderma, Sarcoidosis and Box Wine

West Coast Krav Maga

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.

 

 

My GI Jump Start: Scleroderma and GI Involvement

Nurse holding jumper cables. She looks crazy

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 

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.