Scleroderma and the Agony of the Feet.

The Scleroderma gift with purchase includes a free facelift, and fat removal- on our feet.

Circulation, pain relief, and proper foot maintenance are key for anyone with feet, not just patients with scleroderma. I have been dying to write a post with this title for years and today I was inspired by a fellow patient who posited a question about her own feet.

In 1999, there was very little on the internet about scleroderma except for worst-case scenarios. Recommendations for long term care and maintenance of anything scleroderma were scarce, except the phrase, “get your affairs in order”.

Few doctors had seen active scleroderma patients. Thanks to research and effective treatment, the active scleroderma patient is no longer a myth.

Back then, I ignored the sedentary advice and I became active. When I remained active, my condition improved until a new symptom would pop up, like the problems with my feet. The issue with my feet sucked, but I learned valuable troubleshooting skills I revisit today when something new pops up.

Over time, the fat pads on my feet had deteriorated. It’s common in scleroderma. It hurt and I briefly gave up walking. I get my healthcare through the VA Healthcare System and I had been seeing podiatry specialists for years. When my feet went wrong, I understood why I had consistently been seeing podiatry.

I was fitted with custom insoles and I went from using a wheelchair at Disneyland to running through Disneyland. The insoles, coupled with gentle exercises like yoga, pedicures, massage, and a high protein diet, continue to work together to keep me mobile.

But with all of that help, the obstacle of depression crossed my path, often. The cause of my depression is usually grief from the loss of something or progression. Because these problems are in the long term, unresolved my depression must be managed, because it will never go away.

The first time I acknowledged my depression was a problem it was 1999 when my weight became 98lbs when fully dressed and wearing boots.

Scleroderma patients are unique, however, scleroderma patients are not alone when it comes to depression. As with any progressive chronic condition, patients constantly cycle the stages of grief. (Kübler-Ross Model).

Grief used to be associated only with death, but every loss has some level of grief from 0 to 100. I use Kubler-Ross’ example because it is the one that I am most familiar with. In my case, I use denial as a coping mechanism, but prolonged denial for me leads to depression or anxiety.

Depression hits me like a ton of bricks and I gravitate to inactivity. During those times of inactivity, that’s when things get worse mentally and physically. Currently, I am a few months out of a depression episode. Thanks to years of therapy, meditation skills and continued use of antidepressants, I have created my lifeline. It’s a couple of family members and a couple of close friends to whom I reach out to when I have depression or anxiety flares.

The thing is, with a chronic condition, there is no solution to the problem because the problem never leaves. I’m constantly facing current problems along with managing the fallout from past problems.

For me, denial is like both weather and climate: Trends in climate allow preparation for stormy weather. One can get through a storm, but without preparation, one storm can create catastrophic long term damage. Just like denial will get me through the day, but without preparation for dealing with denial, catastrophic long term damage is a guarantee.

If you get one thing from this post, it’s that there will be grief and pampering our feet is not a luxury, it’s a necessity. And that some necessities like pedicures help with emotional issues in addition to the physical health benefits. It helps me regain my power.

If you’re a scleroderma patient, something weird may or may not be happening to your feet. This blogpost won’t give you a diagnosis, but this blogpost does offer some things to do to find relief or prevent injury.

Here are some tips by Scleroderma & Raynaud’s UK (Twitter: @WeAreSRUK)
->> https://www.sruk.co.uk/raynauds/managing-raynauds/foot-conditions/
This organization bases it’s information on research.

Here are some things that work for me.
This is based on my personal experience and it somes with a warning:

Steve Martin in Dorthy Rotten Scoundrels wearing an eyepatch holding a fork that's corked in the eyepatch.
Don’t be this guy.

As always, please check with your physician before trying anything. I am not a doctor. I have a degree in psychology which means I am barely qualified to advise you not to stick a fork into your eye.
– Karen Vasquez  

Here are some things that work for me.
This is based on my personal experience.

I wear flip flops in the shower and around the house. I have a protein shake in the morning for breakfast every day.  Yes, sometimes, I have had a protein shake first thing and then pancakes with my son about an hour later- there’s always room for pancakes, and they are freakin’ delicious.

The loss of fat pads was a huge setback for me. It’s painful and it sucks and it did trigger my depression and major anxiety disorder. My secret to managing pain is Tylenol with Klonopin. It used to be a Vicodin every morning- and it helped most, but it’s nearly impossible to get enough Vicodin to keep around leftovers from a prescription. just in case. But it’s not the end of my activity. I recently discovered brushing my skin, and I brush my feet twice a day.

For those new to podiatry, find a good podiatrist in your area that is all about surgery as a last resort. I have had no surgery or treatments. But age-related foot surgery may happen in the next 10 years for me.

My best shoe recommendations are Merrel and Uggs. I wear running shoes with formal gowns. It took some time for me to build my confidence. My brother gave me the best advice. He told me, “Remind yourself, I make this look good.”

An insole can go into almost any shoe. I have tried them in heels- one-inch heels. It’s good for photos, but not longer than 20 minutes at a time for me. I do miss my heels, but it has taught me confidence is sexy.

And when I feel like I don’t “got this”, I go down rabbit holes like 1980s music videos. By the way: You Look Marvelous. <- follow that link for an old-timey laugh.

A written description about the hashtag for this blog, #LaughAtWhatScaresYou

Scleroderma Awareness Month 2016

Scleroderma awareness is not all rubber bracelets and t-shirts. It’s about sharing and teaching others about the hard work being done for patients, providers and caregivers

Wednesday is the start of #scleroderma awareness month. There are different types of scleroderma; limited, morphea and diffuse. I refer to diffuse as “The Fast and The Furious” type, because most medical providers have little experience with scleroderma, many patients with diffuse scleroderma find out later in the disease process; which means it’s more likely to be fatal, faster. Kids can get scleroderma as well, forcing them into aggressive treatment on their young bodies. Awareness for the public is a great idea, in addition to the public, medical professionals need diagnostic training. The more physicians and nurses who recognize symptoms and signs, the better the chance of survival for scleroderma patients.

Thirty years ago, scleroderma was a death sentence. Even my diagnosis in 1994, most physicians I worked with did not believe I would live to see my 30th birthday. Here I am in my mid-forties. Make no mistake, scleroderma is a progressive, degenerative disease that hardens connective tissue, which is everywhere. I have fought to stay here by lifesaving treatments and hunkering down to survive the worst. I am only here because of the research done to treat the progression of scleroderma. Donate to research, provider education and patient education and support. You will save lives.

Unfortunately, I will be unable to attend the Scleroderma Foundation, Southern California Chapter walk this upcoming weekend. I will be working on a movie set, thanks to the hard work of those who work to improve lives of all patients living with a progressive degenerative disease. Life didn’t turn out how I planned, but life is good. (Does anyone’s life ever turn out exactly as planned?)

My secret is not a good attitude. (By the way, I hate that poster that the only disability is a bad attitude. It’s fluffy bullshit that makes people who aren’t disabled, feel better. See, my attitude is actually quite bitchy.) The number one reason why I am able to thrive, is because I got treatment for my depression. The chemicals in my brain, actually changed because of my depression. Depression is an unseen side effect of scleroderma. I learned to grieve for my losses and find purpose in my life. Not like some lofty help-the-planet kind of purpose, but reasons I want to be here. I don’t want to be a poster child for scleroderma. I did at one time, but now, no. I want to be known as a mom, sister, writer, comedian and dog love who happened to have scleroderma. I am not my scleroderma. No one is their scleroderma. >(Click to read about my experience with depression.)

    Please visit my blog page, The Mighty Turtle. I was diagnosed back in 1994. I began blogging in 2009. I am currently in a screenwriting mentor program, a stand-up comedian and soon, producer. Life is not over after a scleroderma diagnosis. Research is delaying death for many, but we have much more to do to help patients live with the disabilities caused by scleroderma as well as stop scleroderma from killing those who can’t stop it.

How I Don’t Look Sick

Well, at least I think I don’t look sick, or like I have scleroderma.  

I read my dear friend Chris Dean’s  blog this morning and I was so excited to read she was trying out products. I told her so, and she encouraged me to post about my make-up tips.   In the past fifteen years, I have spent thousands of dollars on products I have thrown away.  I finally got wise to return policies.  That helps, but nothing- I mean NOTHING works as well as samples and trying it out yourself.  Well, except someone who is trying products and posting pictures without make-up.  My friend Chris is doing this.  She looks beautiful with and without make-up.  I thought about posting my before and after, and I won’t.  It’s not that I don’t have the self esteem.  I do.  I just hate seeing myself in pictures without make-up.

Before 1996, I never wore foundation.  Just eye shadow, blush, eyeliner, mascara and lip gloss.  Okay, maybe mascara if it were a special occasion.  Now, I set aside at least thirty minutes every day, to cover the damage from scleroderma.  My lips have become smaller, thanks to my scleroderma face-lift. (That’s the scleroderma free gift with purchase.)  And now that I have decided to pursue writing and stand-up comedy, I have found a way to get big lashes, without wearing fake ones.

I don’t think I was “the hot chick”, but I did once cause an accident while in my bikini walking to the bus stop on PCH in Huntington Beach.  before scleroderma, I didn’t mind posing for pictures, I would even photobomb.  Then, scleroderma struck.  My face began to change.  I began to notice this change in 1996, and that is when I began my search for a long lasting foundation.

My pigment began to be darker in some places, and lighter in others.  I’m Italian and Spanish, so I can tan.  Then I began to tan on parts of my face, and hands.  The way it looked  reminded me of an animal print.  Leopard, to be specific.   At the time, I worked in the shoe department in a large department store in La Crosse, Wisconsin.  I had a friend at the Estee Lauder counter.  My sister, worked at Clinique in South Bend.  So, luckily, I had a lot of help.  This was before Estee Lauder’s Double Wear.  Their foundation worked well for my skin, but it did not stay on as long as I needed.  Then, thanks to my sister, I found Clinique’s Work Out Make-Up foundation.  They have a comparable formula now,   At the time, I had no broken blood vessel damage.  It was simply a pigment issue.

My biggest problem with make-up wasn’t which formula I could use.  It was how I applied it.  At the time, I had ulcers on six finger tips.  I could not use my finger tips. to apply foundation evenly.  I didn’t really master brushes with liquid make-up, until recently, so I used make-up sponges.  They were fabulous!  The only problem was, they were disposable, and they sucked up product.  So not only was I spending even more on foundation, I was creating waste.  There has to be at least one landfill of sponges that were mine.  Just another lane on my highway to hell.

Finally, I figured out that concealer as foundation, in some cases, works best for me.  It gives the coverage I need on darker spots, and I can make my face lighter or darker with power foundation and bronze.  But it still had it’s problems. I hadn’t considered photographs.

In 1998, I was married.  Most of the wedding pictures taken with personal cameras turned out great.  Then we picked up wedding album from the photographer.  No one really thought of it as a flaw I guess, but me.  The kind of make-up I used, picked up the light from flashes.  I had that mask look in many of the pictures.  I guess the photographer thought that was how I looked?  No, the truth was, I did not see me, when I looked at my pictures and cried in the car.    I saw someone with scleroderma and I wanted nothing to do with it.  That’s a whole other post, let’s get back to the make-up, because there is a fix for that.

When I don’t wear make-up, I look very sick.  I have telangectasia damage all over my face, and my pigment is very inconsistent. The only time I don’t wear make-up, is if I am going to the emergency room.  Because I look like I have broken out with something, and it moves things along faster.  I have gone to the doctor for check-ups, routine check-ups with nothing wrong feeling great and if I’m not wearing make-up, I get comments about how sick I look.  I could be in yoga pants, bouncing off the walls with happiness after a hike, but if I’m not in make-up, I get comments like, “Oh you poor thing”, etc…

So, thanks to the help I get at Sephora and their amazing staff, (Hello both Temecula locations and JC Penny Glendale!) I have found a few things that have worked for me.  I need to switch foundations when my skin is dryer, but I’m going to tell you what I’m using right now.  Again, you can probably find less expensive alternatives if you can use your fingertips for application.  I took these products right out of the drawer in my bathroom.

Nars Bronzer, Kat Von D Lock-it Featherweight Primer, Make Up Forever HD High Definition Foundation, Kat Von D Lock-it Tattoo Powder Foundation, Sephora Brushes 45, 57 & 55

Karen’s Foundation Routine

  1. Kat Von D Lock-it Featherweight Primer.  After moisturizing, I put this on before applying my eye-make up.  It gives the primer time to set up.  Unlike eye make-up primer, foundation primer needs to sit.  It takes me about 15 minutes to do my eyes on a night I have a show.  So a minute or two to set is fine.  If I don’t use primer with any foundation, it doesn’t last as long. I also notice I use less foundation.  I do apply this with the side of my fingers because it doesn’t need to be layered and buffed like foundation.
  2. Make-up Forever.  I just switched to this one week ago.   I was wearing Kat Von D’s concealer, medium 24.  I just preferred the concealer color to Kat Von D’s Foundation (liquid) that matched my tone.  I switched to Make-up Forever.   The color match was better for me.  Both formulas are easy to work with.  Kat Von D is famous for tattoo cover up.  That stuff works.  Yes, I don’t change primers when I switch foundations.  You don’ t have to buy a whole new bottle. I’m sticking with Kat Von D.  I always keep Smashbox’s green primer if I run out of primer.  Not because I love Smashbox.  It’s because I bought it, I wasn’t crazy about it and I bought it from Ulta and I lost the receipt.  It’s great to use if I run out of primer as my back-up.   What matters most, is what helps you, not me.  I’m probably belaboring this point.  I’m fiercely loyal when I find products and if I like working with the people who sell them.  For  full disclosure, I drive 87 miles, one way to get my hair done.  It’s absolutely worth it to me.  Shop where you feel is best for you, and worth your time.
    Okay, back to my routine:
    I apply my foundation with Sephora’s #45 brush.  It used to be called “Mineral Powder” and something in French.  Someone figured out that it can apply heavy and buff out well for even coverage.  (I figured it out first.) Because the red is so dark, it takes layers of foundation, with this brush, I can do it in one layer.
  3. Kat Von D’s Medium 52 Foundation Powder.    I love this stuff.  If I didn’t need to layer so much, I would just wear this. I do a light dusting over my foundation.  I use Sephora’s #55 brush.  I would love to have one of Kat Von D’s Brushes, but I already had these and buying another brush was not in the budget.
  4. Nars Bronzer.  I just love Nars colors and quality.  I use it as a blush and bronzer.  I also apply this to my neck and up my chin line to even get rid of that pesky chin line.  My bronzer is ver close to my natural all-over skin tone.  Not everyone needs it.  If you don;t use bronzer, be sure to smooth out that chin line with a powder.
  5. Kat Von D’s Lock N Load Makeup Setting Mist.  This stuff is the shiznit.  I set my layers with this, then let it dry.  I keep it in my purse in to prevent my skin from drying out during the day.   My skin is dry, and if I’m at event where there will be photographs, I wear a little heavier concealer.  A little spray once during the day, keeps everything set.
It doesn’t matter where you get your make-up.  What matters is what works for you.  Start with the inexpensive stuff.  Just make sure you check their return policy.  I have returned opened make-up to Target, Walmart & Sephora.  Macy’s and large department stores have good policies as well.  Don’t use it like a library, be reasonable.  They can refuse your return if you abuse it.  But  these stores have a large enough variety of products and inventory, they are able to do that because they know they will keep your business from other departments.  I know Target now has a make up artist in their cosmetics department.  I have worked with two, and they were helpful and recommended great products and tips.  Now that I know what I need, I use Sephora.  I love their staff.  And I get a birthday gift every year.  The points are great too.  I have to replace mascara every two months and if I don’t have a show coming up, the free gifts with my points are a great way to stock up on travel size items and try some of their higher end skin care skin.  And if you can, go in the store with your dad.  We dropped into Sephora so he could pick up some cologne.  He told me to pick anything out I wanted and he’d treat.  I think he saw me as the 13 year-old Karen.  The 43 year-old Karen, picked out the Murad Advanced Radiance Serum.  He was not expecting it to cost $150.00.  Looking back, I probably should have bought two.

I hope that was helpful.  Questions? Post them in the comments.

 

 

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

 

 

 

Time Flies

I can’t believe it’s been so long since I have posted.  I have been writing posts, but they have been a bit angry.  You see, I prefer not to talk about having scleroderma, or living with it.  I prefer to write about it, but then I get on stage and make fun of it.

I recently told a fellow scleroderma patient on FaceBook, that I don’t think of scleroderma as a terminal disease.  After reading it, I felt like an a**hole, but I guess denying the death part, helps me get through living with it for so long.

For years, I was in pain.  I kept asking for it to be over.  Then I realized scleroderma would be gone when I’m dead.  I rather enjoy being not dead, but who doesn’t?

Then I see patients who are dying wearing oxygen canula, and I think to myself, “I’d rather die than do that.”  Then, I remember the people who love me and I wonder what I would really do.  I talk a good game.  I don’t think I would have the ovaries (or balls) to live with major obstacles that would make me walk slow, or have someone else help me.  Well, I could walk slow, but I couldn’t live with someone who took care of me.  I’d have to have someone help me, but not be my friend.  I once had a caregiver help me, when I got out of the hospital last year.  I had her stop coming because her uniform and face, represented my need to ask for help.

I think that I could not so those things other patients do, to stay alive.  Then I remember that I hate it when people tell me that they aren’t as strong as I am, and they couldn’t hack scleroderma.  When someone tells me that, in my head I hear a voice that says, “Bitch, please.  A trained monkey could do what I do, with the resources I have.”

Now, I’m the person saying to the scleroderma patient, “I couldn’t do what you do.”

We never know how really strong we are, when we are face to face with a challenge.  I will still continue to believe that I’m not terminal, because I’m not.  But I will stop thinking to myself that I would rather die than need and ask for, help.  Okay, you and I both know that’s bulls**t; but I will stop thinking to myself that I would rather die than ask for help with my activities of daily living… for five minutes.  Maybe I will think about it for five minutes once a day, but don’t rush me.  I’ve got other things to do, not related to scleroderma.

I Hate The Documentary, Project Scleroderma: Beneath The Surface

Prologue
Like most of my posts, I start with a topic, then go  ‘off-road’ with a personal related story and get back on track.   I have tried to change that, but this is after all, my blog.  Enjoy the crazy!

I hate the documentary called Project Scleroderma: Beneath The Surfce
For the longest time, when I  heard the name, my heart would swell with feelings of resentment. I justified these feelings by telling myself this documentary about scleroderma, only showed worst-case scenarios.  That people live well with scleroderma if they just stay on top of symptoms. My justification is one big fat lie I tell myself to avoid the reality of what is happening to my body.

See Project Scleroderma. Learn about scleroderma and share link with friends.

Since my diagnosis in 1994, I have said a resounding, “NO”, to scleroderma.  My body, my mind and my heart scream “NOT ME”.  I am not going to be that club-handed and disfigured patient lying in pain that is the face of scleroderma.  I am certainly not scleroderma.  The truth is, that is exactly scleroderma and that is something I fight to avoid facing.  After more than twenty years of treatment for depression, I have learned there is nothing that will make me face the inevitable hardening of my lungs and eventual death.  Hold on, there is one thing that will pull me out of this depression and off of these meds: if it stopped and the damage is reversed.  (Hey, a girl can dream.)

I used to lock myself in my bathroom and scream silently, wishing the scleroderma would just stop.  Have you ever have those nightmares where you scream and there’s no sound?  Yeah, that.  Only it’s real.  And when the scleroderma stops in reality,  I’ll be dead.

Is it so terrible I live in denial that something is grotesquely disfiguring my body as it slowly kills me?  No, it’s not terrible at all.  (Lala Lala Lala I can’t hear you!) Because that is how I get up every morning.  I am always surprised when I see my hands every day.  I have to ignore my hands to get out of bed.  I can’t accept that God has a plan.  Because if God does have a plan, I have nothing kind to say about God..  I joke about making margaritas on the Handbasket to Hell, Because if there is a God, and if we meet, I would try to kill him/her.  So I prefer to believe there is no god.  It makes the most sense.  And if you’d like to tell me that when I am faced with death that I’ll start praying, I will tell you that is bulls&*!.  I have nearly died three times that I know of, and been clinically dead once.  There is no bright light.  And dying is actually quite relaxing when it’s not painful.  I speak from experience.  You know what terrifies me more than death?  Looking sick and in pain.  Not the kind of constant chronic pain people with chronic illnesses are forced to suffer because a bunch of non-ill people abuse pain medication.  I dread the pain of my body rotting and the feeling of the nerve endings dying.  If you have never felt a piece of your own body as it turns black and dies, I don’t recommend it.  I was in the hospital with a rotting thumb and nurses refused to contact my doctor as I begged for pain medication.  It wasn’t invisible.  They could see the necrotic tissue of my thumb die before their eyes. But according to them, I was just being hysterical.  They had never heard of such a thing.  And I also heard them say that I probably did it to myself to get pain medication.   And here are some more of the hits:  “Her thumb isn’t rotting off.”  and my favorite, “It’s all in her head.” That sore turned gangrenous, then tissue around it started to die.  An arteriogram had been done before I went into the hospital and it showed that the arteries to my thumb were completely choked off.   My thumb was getting blood back-flowing from the vein.  (Who are they going to believe?  Their own eyes? Not a chance.)

Oh, and if you are reading this and you are a nurse, I can hear you when you think I can’t. I love nurses, but I have met some real winners.

The funny part of that story, is that was in 1996 at a Veteran’s Hospital.  After loosing part of my thumb, my care was transferred to the Madison Veteran’s hospital, where they stepped up and began treating my illness.  But of course, the problem of nurses acting above their pay grade still happened recently In 2013, I heard similar statements at the nurse’s station at the Long Beach Veteran’s Hospital in the long term care unit.  The only difference is, we can add,”One day she’s going to wake up and not be able to move.”

Because I guess I was not having a reaction from 30 days of morphine, as evidenced  by my chart from prior hospital stays when I had a rash, the medication Benedryll was given to me in a higher dose, and the rash was quickly resolved.  The “wake up and not move”, were one of many comments of nurses who insisted on their own expertise based on their time working in a glorified nursing home.   They were mostly overworked BSN’s who did the jobs of CNA’s.  I actually had to teach them how to change the needle on my port-o-cath.   When I refused an IV into may arm and after one nurse finally figured out a patient should not be teaching nurse how to do their job, they got someone in to show them.  This manager was pretty upset when he found out what was going on.  Also, many nurses shared their beliefin the power of prayer.  In the beginning, I thanked them for their well wishes, and politely remind them occasionally that I don’t believe in God.  One nurse even told me I wasn’t taking good care of myself because I did not believe in God.  I do love nurses, but I love freedom from religion more.  I have made more than one nurse cry after they have put my life in jeopardy,  then I think of nurses who refuse to listen,  I have dealt with through the years and my guilt just disappears.  I don’t make nurses (and some doctors) cry for my entertainment.  It’s usually after they have made a careless mistake, or base my care on their experience with nothing related to the symptoms I have.  That and I hate them telling me that God loves me and has a plan, especially after I tell them I am an atheist.  It’s so disrespectful.  I don’t try to talk them out of their faith.  Why do they insist on talking me out of my lack of faith?  I guess that’s a whole other post.

Wow.  That was a rant.  I have left it in so you can get a glimmer of the judgement and doubt by practitioners, family and friends, scleroderma patients get:  This post talks about my time after scleroderma was diagnosed.  I can’t imagine what it would be like to go years with mysterious symptoms and being told it’s all in my head.  Oh wait, I did.  Again, whole other post.

I avoid things that point out the reality of scleroderma.  It’s what keeps me from drinking my  bottle the liquid morphine I keep.  Not to kill myself, but for pain.  I want to numb myself from feeling everything that has been damaged to my body.  Luckily, I love my family and friends and even more, I love myself too much to check out or keep myself over-medicated. (A little narcissism every now and then can be healthy.)

I greatly admire those who lead and participate in support groups.  I cope by paying attention to my symptoms as they come, getting treatment and finding things to do that have nothing to do with scleroderma.  I don’t participate in support groups.  I will assist in raising funds for patient support, I just choose not to get my support from other patients.  It’s not because they are fellow patients.  It’s because I do not want scleroderma to be the reason we hang out, and our only topic of conversation.    You may think that is selfish.  Maybe it is.  But it’s what works for me.  I share stuff in my blog.  That’s how I am able to help others.   It’s what works for me.

Project Scleroderma is a wonderful project that is going to help present and future scleroderma patients.   It’s well made, full of the horrifying reality of what scleroderma does to the human body.  And that’s why I can’t watch it, yet.

In 1999, I nearly died of depression.  I didn’t realize it, but I had stopped eating.  It was triggered by a failed study of treatment.  I was forced to see that scleroderma was going to be a long, slow and painful death.  It took years of therapy, medication and had a large role in what lead to my divorce.  And here I am, still alive.

Yesterday, I hung out with my son and played Smash Brothers on our Wii U.  The day before that, we went to Disneyland because we have annual passes.  And the day before that, on Valentines Day; my son and I went on a strenuous and beautiful hike in Griffith Park.  I have an amazing life that I would not trade for anything.  In September, my brother is getting married to an amazing woman I love dearly.  And I can’t wait to see my sister, brother in-law and nephew who will be here for the big party.   There is nothing that will motivate me more to keep fighting, than the life I have ahead of me.  And it won’t be easy.  I might get my heat broken a few times.  I’m going to have to keep going to auditions after being rejected.  After bombing during a set I wll convince myself to listen to the recording of me dying on stage to improve my set.  I’m going to have to do the dishes instead of throwing them into the trash.  I can drive seventy-five miles one way to pick up my son.  The stuff that people worry about- the medical stuff; to me that’s just like brushing my teeth.  A trip to the emergency department is just like a trip to the dentist.  Having to correct a pharmacist and tell him or her I will not cut my dose of Viagra to save the Veteran’s Administration and in prior cases, insurance companies, money, well that’s just fun.  It’s one of those silly, petty things that allows me to feel like I’m in control of something.  And of course, I horrify my family sometimes when I use humor to cope with what scares me.

Many of those involved with Project Scleroderma:  Beneath The Surface, have witness first hand as their loved one died while they could do nothing.  There is nothing anyone can do to stop death, once the symptoms of scleroderma become fatal.  Nothing except treat symptoms as they appear and slow progression with immunosuppressants. But times, they are a changin’.   (Immunize your damn kids, by the way. Please and we on immunosuppresants thank you.)

Twenty years ago, people diagnosed with scleroderma were told to get their affairs in order and prepare for the worst.  Thanks to research that has brought about treatment by non-profit organization.  This of course is not a cure, but we’re getting there.  Scleroderma is different in every patient.  There are amazing treatments available to patients whose doctors know about them.  (See the problem there?  We need to get the word out.)  We need to get doctors educated about scleroerma so they can offer their patients the bet possible outcome, while they wait for a cure.
Honestly, I don’t believe there will even be a cure in my lifetime.
I dare you to prove me wrong.
(Seriously.  I’m tired of being right most of the time.) 

Epilogue
Someday, I will watch the entire Project Scleroderma, documentary. Right now, I am busy coping with the progression and damage scleroderma has done to my body by simply getting out and doing what I want .  I usually don’t like to ask others to do what I wouldn’t, but I’ve lived with this for over twenty years.  I think I’ve earned a pass.  The Scleroderma Project, is a reality I don’t wish to face.  I will be forced to face it soon enough when my lungs stop working.  For now, I’m going to proof this, maybe do a Brazil Butt-Lift work out.  (Just because my hands are messed up, that doesn’t mean I can’t have a fine ass.) Then go on a long hike while listening to Foo Fighters.  So while I’m busy living, please watch and recommend Project Scleroderma.  Share what you learn, what you have done or what you would like to do, for patients with scleroderma.

You can find Project Scleroderma on Facebook,    Twitter  Website

To learn more about scleroderma:

NIHS: Facts about scleroderma.

Scleroderma Research Foundation, a partner of The Scleroderma Project

Scleroderma Foundation

Federation of European Scleroderma Associations Facebook  Website

Scleroderma Care Foundation of Trinidad and Tobago

If I forgot anyone, please send me a message on Facebook – Karen

And now, a shameless plug:
I’ll be at The World Famous Comedy Store  February 25th.  Because laughing has only made me stronger.  And, I could really use some butts in the seats.  Click here and get your tickets at the door.  $10.00 two drink minimum.  This is up a flight of stairs.  Visit my comedian FB page, hit “like” for information about upcoming shows.

What I Would Tell My 23 Year-Old Self, Newly Diagnosed with Sclerodema, Part 2

Talk to someone.  I’m not saying sign up for complicated psycho-analysis.  Just talk to someone.

 

You have a lot of things going on, it doesn’t matter what stage of life; something will always be happening.  People would tell me, “Oh and you’re so young to have scleroderma.”  Look, even at 43, I have a lot going on, and it would still be a shock to my life.  Now is no different from 23 for me.  Sure, I was in college, but the busy I have now, is just as busy, without all the partying.  And without all of this partying, one would think I have a lot more time, but no.  Now, I make time for something called resting.  Resting is nice and all, but it’s not fun for me.  So, I watch TV, I write, I go out and have body parts waxed.  I need to have activity.  The worst part is, the activity I would like to do, isn’t always possible.

 

I need to take consider weather conditions, how my shoes fit and I hpw I feel about not wearing fun shoes.  Okay, shoes is a very shallow example, but this is a blog and some things are too personal for me to share, so I’m going to use how I feel about shoes as an example, and you’re all going to have to live with it.


I would really, really like to be able to wear a sundress with cute heels.  Okay, I would really like to wear heals with anything, but if I’m going to wear a dress, I usually wear boots because I can get away with wearing flat boots and not look like I’m wearing orthopedic shoes my doctor prescribed.  There is only one problem with that:  I cant wear boots in the summer.    Sometimes, I will shop for cute shoes, but because of the changes scleroderma has done to my body, I can’t just throw on a cute pair of flat sandals, because they need to have padding- not just thick soles, they need to have effective

My sister & me the night I passed my EMT 1-A certification in 1994. We were not drunk in this picture.  Not at all. 

cushioning and support.  No one got the memo in cute shoes, that they should have some orthotic advantages.  See the similarity between bathing suit shopping and this?  Good.

 

So why can’t I just find some comfortable sandals, and get on with my day?  Because comfortable sandals that “look” like comfortable sandals, make me feel like I am letting scleroderma win.  So, I’ll wear jeans instead, and wear some converse sneakers.  And I have just decided to wear converse sneakers with my sundresses this summer, which is not all that cusion-ey, but I can fit my orthotic inserts in them and no one can see them, I can wear socks so my feet won’t stink and I get to be comfortable.

 

My point?  Eventually, we all find a way to adapt, but sometimes, I need a little guidance from someone who is not trying to make me fee better, but providing objectivity.  Someone who’s going to ask the questions like: Is this really that important?  Aren’t you over-reactiong, and not going to tell me to get more rest.  Family usually doesn’t do this.  Not because they’re evil, but because they want to help, and I usually don’t listen to them.  I would tell my 23 year-old self to get some counseling.  Scleroderma involves a physical battle as well as a a psychological battle that can effect health.  Find an outlet.  Get to know a counselor or someone who will listen when things get crazy.  you will be glad you did.  Because you are not crazy, you are just coping.

I Suspect My Family Is Planning an Intervention.

I have made lack of long term planning an art form.  

I think I have come to grips with what is really bothering me.  In October, I was doing well.  I had established a routine I loved.  I was exercising,  scleroderma seemed to have run it’s course and it felt as though the clouds in my brain had parted and beams of sunshine warmed my mind and spirit.  While all this happiness was going on, I neglected one thing: Preparation.  I had not prepared for unexpected complications.  I had local support from friends and family, but there was no plan on for a long term, unexpected hospital stay.  Brilliant!

 

My failure to be prepared has been haunting me these past couple of weeks.  I had a few days of deep depression, until I stopped bouncing off the walls and bounced out of bed.   I accepted my feelings that I was irresponsible and selfish about this.  I am 43 years old.  I should have known better.  I have two chronic illnesses and there is no reason I should not have my affairs in order.  Not because I think I’m dying, it’s my responsibility as an adult.  No excuses. Just onward.

 

Today, I Get Organized. 

And I have someone to help me do it.  I was authorized Homemaker Assistance by the Veteran’s Administration for 90 days.  Twice a week, I have a helper.  She started last Friday.  I was a bit worried  the company might send someone who would not be happy about helping someone with laundry.  It;s happened before.  In the 2003,  I was authorized a home heath helper.  The helper came and when she found out there would be house work involved and I could dress myself, the next week I was sent someone who my ex-husband thinks stole DVD’s and had a whole host of personal problems she brought to work with her.  But not this time.  I was sent an amazing woman who not only showed enthusiasm to help me and inspired me to keep going.  I felt stronger for three days after her first visit.  I am not sure how to explain it.  I never felt like I was helpless and overwhelmed when she was here.  I felt empowered and was reminded by doing, that I am still capable.

 

Arthur Fonzarrili’s May Be My Distant Cousin.

Remember the show Happy Days?  (Oh you don’t?  Google it youngster.) Remember the character, Fonzi, would never say he was wrr-wrr-wrr-wrong?  I would not ask for he-he-he-help.  I would take boxes of files and set them in my living room with the intent to organize.  Then I would get 15 minutes into it, injure myself or find an obstacle and stop.  I moved here in August.  Here are the files I intended to organize.  It’s JANUARY.  These boxes have been sitting in my room since August.  That bag on the left, that’s last weeks laundry.  I’m not sure, but my family may be in the process of planning an intervention and I don’t blame them.  Hopefully

 

When I got out of the hospital and the VA Hospital Social Worker called to see how I was doing, Instead of my almost reflexive answer, “I’m okay.”  Instead, I calmly explained what I needed in terms of assistance.  She, a nurse practitioner and another social worker found a way to get me approved for assistance at home.  The VA is still working out the kinks of catering only to old men.  They have made a tremendous amount of progress, but there is always unexpected ground to break in any system.  And in this system, I am so thankful to work with some of the finest human beings in health care.   So, onward.

 

I have to go now, she’ll be here in 15 minutes.  Maybe I will post a picture of that as a corner empty space tomorrow.  Who knows, anything is possible.  Happy Wednesday!