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

Moved.  For this post, please click HERE

Pain Medication Is A Tool I Use Often

I am so sick of the phrase, "I don't want to depend on pain medication."

No one wants to depend on pain medication.  But given the choice of spending the day with my son with pain in the background, or staying home writhing in pain, I will take my pain meds every day and twice on Sunday.

Scleroderma is not going away.  My hands are never going to be the same.  Changes in weather will always affect my pain levels.  But if I sit still and wait for the pain to go away, I will curl up and die.  I know this to be a fact because I tried sitting still and it nearly killed me.  

I have many more adventures in my future
because of pain management w/ medication.

For years I allowed what I allowed what other people thought of me, to determine my use of pain meds.  Look, a good buzz is fun, but I don't get that from Captain Vicodin (Thank you for the name Stephanie Wellborn Kennedy (@Steph_In_NC) Captain Vicodin is my friend and has helped my body benefit from movement I would not have done, if I did not have such an amazing tool.  Because that's what pain medication is- a tool.  

And I don't say these things lightly.  There are many stupid doctors who will hand a patient they have no idea what to do with, a prescription for 600 Percocet and say, "Take that as often as you like."  Yes, that happened to me.  That turned into 8 Percocet a day. My doctor did not think in the long term.  For years I was treated as though I would be made to feel comfortable until I dropped dead.  Surprise!  I'm still here.  The doctor did not take into account that Percocet was fast acting, strong and had a short life.  It is because doctors misuse prescriptions because they don't know what they are doing, and patients end up with medication that does not work for them.  

Chronic pain is long term.  It's not going away. As patients, we need to make pain tolerable.  Yes, I said tolerable.  I have never been pain free since 1993.  When a nurse asks me what my pain level is, I laugh and  I answer, "A constant 2."  My hands are curled.  I have no fat pads on my feet.  I am constantly bumping my hands into objects and sometimes people.  There is no such thing as pain free.  Of course I'm not okay with that, but I don't have any more time to spend in therapy to talk about how pissed I am about it.  I have a 10 year old son.  I live ON THE BEACH.  Life is whizzing by and I spend enough time at the Veteran's Hospital, so pass the antidepressants and sedatives when needed.  I'm going outside.  

Look, getting to this point took a lot of time.  So if you find yourself saying things like, "I don't want to become addicted to pain medication."  You know what?  People take cholesterol medication and eat hot dogs.  You know why?  Because they are out enjoying their lives.  They have a healthy diet, but they have a treat every now and then.  Taking pain medication so that I can tale a shower easier is not a treat for me.  It's necessary.  And you now what?  When, I do I find I need less pain medication throughout my day.  Normally, I take one Vicodin in the morning and usually, I do not need another the whole day.  There is more to pain than what's causing our pain.  

Look, I could go and do a search for research about pain management and exercise; exercise and depression; etc…  Do the research yourself, learn about your own body, and train your doctor(s) and family.  Take control of your life (Yes.  Yes you can.)  Take your pain meds and use them smartly and as a tool, because that's all they are.  If you are using pain medication for "the buzz", you are not in enough pain to be using pain medication.  Depend on them.  There are very few things we can control with a chronic illness.  If you can control or tolerate your pain because of a few pills, do it. 

When someone tells me that I "shouldn't depend on pain meds", because of "their ideas", I ask them to do this:  "Go outside, rub your knuckles on the blacktop.  Then walk through some broken glass.  If you can sit tight with that pain, I'll stop using my pay medication for my chronic pain.  Because that's what my chronic pain feels like if I don't keep my pain under control."  

Take your pain meds.  Be smart about it.  Don't let people who create the suspicion of abuse tell you what you should do.  They are uninformed.  As patients, it is often our job to educate family and even health care providers about scleroderma, sarcoidosis or whatever chronic illness we have.  Be your own best advocate.  Because all medical decisions are ultimately yours, you are the captain of your medical team.  

The Michael J Fox Show Is More Than "Just a sitcom" to Me.

I am so excited about Michael J Fox returning to television.  He has a progressive illness (putting mildly), and has found a way to move forward, and giving this a try.  As someone who is asked why I want to work after all that I have been through, and all that may happen, this is more than just a sitcom.

I am thrilled, inspired and stoked about Think/Able  I've been doing it for years and people now get to see it as a possibility.  Because hey, nothing really happens unless it's on the TV machine.  Everyone's experience is different, and not everyone with a chronic illness recovers to be well enough to go back to work.  But I love that this series plants a seed that patients with chronic illness don't have to crawl into bed and stay there.  That if patients are able to survive the worst or manage their symptoms, that life can begin again.  Of course, it may not be what we had planned.

Two Saturdays ago as I enjoyed an afternoon of training for a new career path.   I was a bit in awe for two reasons.

1.  At age 30,  I could not imagine I would still be here at age 42.    I thought for sure scleroderma was going to rob me of the amazing life I have had since 2001.  Scleroderma added giant obstacles, but I'm still here.

2.  There I was taking on a new career quite seriously.  It's not the nursing career I imagined in my 20's and I didn't care.  I felt like I was in the right place.  I can manage this schedule and I have faith I will achieve my goals.

The Michael J. Fox show is fictional.  I don't have Parkinson's.  But people with Parkinson's, Scleroderma, Sarcoidosis, Lupus, Diabetes and too many things to list here, have shared experiences like loss, grief, victories, successes and weird-ass medical experiences.  I am excited for Michael J. Fox the human, who is working with what he has, and stepping out there to do what he loves.  He gets to go back to work making people laugh.  I am going back to work to play with make up and people.  When I was a teenager, I did want to be a make-up artist.  So yes, I get to do what I love as well.  I'm back at the beginning.  I'm no spring chicken, but I have the heart and drive of an 18 year old.

So, what can you do?  Check out The Michael J. Fox Foundation on Facebook, or anywhere on the web.  Tune into the show tonight, but don't spoil it for me.  I have to miss the premiere because I may not make it back in time from Krav Maga with my son.  Watch the show.  It's fictional, but behind fiction and humor is some truth.  And as the foundation put so well into words, Think/Able.  Learn about it, and be inspired.

What?  You don't have Parkinson's?  Hey, we are in this together.  Progress in one disease helps research of all diseases.  So check out The Michael J. Fox Foundation. 

To learn more about scleroderma, start here with the Scleroderma Research Foundation, but they are not the only "church" in town, but they are the best place to start.  

To donate to help find a cure for scleroderma, check out Bounce to a Cure  and make a tax deductible donation for research and patient education.  

And if you feel like doing some shopping and would like to show support for this blog, check out my online store, here.   (that was a shameless plug btw...)

Scleroderma Awareness Day

As a patient, I don't need a day to make me aware of scleroderma.  

Today, you will read about patients fighting for their lives and treatment.  I'm going to do something just a little different: I'm going to show you what I can do because of treatment available for scleroderma patients.

I am here because of research and exceptional care.

I also am here because I have learned to be my own best advocate.

I am also still here because scleroderma is not my life.

Instead of providing a list of  how it's not, here are some pictures of me fighting.  This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.

If you have scleroderma, remind yourself it does not have you.  If you don't have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.

I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease.  Twenty years ago, I did not think I would still be here.  I certainly didn't think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.

 

What would I say to someone newly diagnosed with scleroderma today?

I  would say:  Expect the unexpected.  Don't give up even when it feels hopeless.  Get treatment for depression.  Exercise.

Scleroderma is going to knock you on your ass.   

It may take a while, but you can get back up.  There are no guarantees, only hope.  Keep going.  Get back up after you get knocked down, and get your hair pulled every now and then.

A very special thank you to West Coast Krav Maga, and Kevin!

Big Day for Marriage Equality Today: Big Day for Me & Scleroderma,Tomorrow

June 26, 2013

I am so inspired by the celebration going on around the country for marriage equality.  It gives me hope the world can be changed if we continue to fight.

Change doesn't just "happen".  Someone has to take steps to set change in motion.  And it doesn't happen overnight.  The law has changed and marriage equality will eventually reach all 50 states.

You must be wondering, "Karen, this should be a whole other blog.  What does this have to do with scleroderma, or any chronic illness?"

Just because we may have a chronic illness, that does not make us immune to discrimination.  Patents and those who love them, should have the right to visit them in hospital, be a part of medical decisions.  That if a person looses someone they have spent their life with, they have tome to grieve, and are granted the rights to benefits left by the one they have lost.

So yes, marriage equality is tied to scleroderma.  In the fabric of time and space, we are all connected and our actions have a ripple effect.

The fight for marriage equality is far from over.  All states will recognize same sex marriage eventually, but there are many hearts and minds against that change.  Luckily, those hearts and minds against it are becoming less and less.  Change happens.  And it doesn;t happen without a fight.

Today, as you fight your fight to stay on this earth, take a moment and find celebration of a fight that's not over, but have achieved a long overdue   victory.  Victory is ours.  Victory will be yours, one battle at a time.  Find celebration on TV or whatever you have.  Listen to the celebration, feel some joy today and live to fight another day.

It's on people: Here's How we're going to get #Scleroderma to trend worldwide.

If you are reading this, it is past 12:01am PDT, June 3, and we are going to get #scleroderma to trend.

I bet you are wondering, "Is she high?" Nope.  As far as you know

Next, I bet you are wondering how we are going to do this?  Great!  Because I have a plan.  First, let's start with the basics.

Are you already on Twitter?  
If yes, go to @Turtlemighty or check the tag #scleroderma.  Tweet about scleroderma, someone you know who has scleroderma,  or a happy memory of someone lost to scleroderma or even ask a question- from a patient, or caregivers perspective.  If you are looking for medical advise about scleroderma, SEE A DOCTOR.  Both a rheumatologist and a shrink.     Don't seek medical advice online. But, you are smarter than that, right?  Okay. pretty easy.  Stick with me though, there's more.  First, we need to help out the newbies.  Be kind!  We all had to start somewhere.

Are you not on Twitter, but would like to participate?

AWESOME!!!

Follow these simple directions:  Go to www.twitter.com, create an account.  Even if you don't want to make it a part of you life, you can always delete the account.  If you have any questions, message me on FB.  

Okay, so now you are Twitter.
Great!  Now, you don't have to tweet all day or anything.  Just throw a few out throughout the day with the tag #scleroderma. If you have time to sit down, do a search for #scleroderma.  Re tweet something if you don;t know what to say.

What is retweeting?
Glad you asked!  Retweeting is when you say "I agree" or you thought the message of a tweet was so nice, it needs to be said twice.  There is an option in a tweet that say's "Retweet".  Click Retweet.

You don't have to repeat everything.If you have five minutes in your day, read through some tweets, favorite some, retweet (RT), modify a tweet, (MT), say something inspiring.

WE ALL KNOW SCLERODERMA SUCKSOkay, now that we have that out of the way, keep it positive.  Not because we're all Miss Mary Sunshine, but because our goal above all is to educate and inspire.  Look, a Kardashian can go into labor and just blow us into the ether of space and time.  Let;s leave a mark so that patients having a bad day can find out that scleroderma is not a death sentence.  People die from it.  It's painful and horrible.  But if a patient has hope that if they can just make it through the worst, there's a good chance they will live longer than they ever imagined.  I say that, because I did that.  19 years ago, I was diagnosed with scleroderma.  I heard of no one living through it.  I wished for my experience with scleroderma to be over.   But, that is not possible.  I will always have scleroderma.  It's a progressive degenerating and soul-sucking disease.   And here I am almost 20 years later,with pulmonary fibrosis, possible pulmonary hypertension, missing the tip of my right thumb, my hands are severely disfigured and I have to as someone to help me pump my gas.  I have been through the craziest medical procedures I couldn't think up if I went on an LSD trip for a month.   Yet, here I am 20 years later, longer than anyone ever thought.  I have a 9 year old son, and guess what?  I'm happy.  Life didn't turn out how I planned.  So what.  Does life ever turn out how we planned it?  EXACTLY?  Sure, my lungs are hardening and a whole truckload of problems, but let me tell you what I CAN do:

You ready?  Because when my thumb was falling of from severe Raynud's, or I was nearly dying from organ failure during childbirth, or having a medialstenoscopy to rule out lymphoma; I never imagined that at 42 I would be doing Krav Maga, Brazil Butt Workout, playng with my nine year old son, planning trips to New York and share a hotel room with 4 other people, or planning a ski trip for my son;s 10th birthday or writing a post about how to tweet an hour before I encouraged the world to tweet about scleroderma.

My power port for easy IV access.

I lived through a few things and I'm going to live through a few more things.  I don;t care that my power port for easy IV's gets in the way of my cleavage.  It doesn't.  No one sees my port because my cleavage is not bad.  I also never thought that I would start a rant about my boobs, but mentioning boobs may put me in more searches.  So join me and a few friends on Twitter.  Life's short.  Let's play.

1995. I thought I was going to be a nurse. Life never turns out how we expect. Although, I was pretty sure I would keep my figure, and I have. But that;s a whole other post.

I'm A Guinea Pig & I'm Okay With It.

Edited 10/31/2013

Medicine is a practice.  Scleroderma, Sarcoidosis and many diseases are not well know by many doctors.  It's important to find a doctor with experience with a chronic illness like scleroderma.  If you have a doctor in your area, wiling to consult or allow care management by a doctor who has experience,  you have hit pay dirt- but that's a whole other post.  

So we have doctors working with us, as well as those who love us who aren't doctors and couldn't pass an audition to play one on TV.  It doesn't matter, chronic illness or not, we get a lot of unsolicited advice and some of it is just hilarious.  

When I was pregnant, I had heartburn.  According to my Aunt Enes,  I was getting heartburn because my baby had hair.  It couldn't be the baby  kicked my stomach around like a flat, acid filled soccer ball.  No.  My baby had hair.  Which I guess is rare for mammals?

Okay, bad example because she gave no advice, just her opinion, but it's always a great story.  She tells me what she believes, because she cares.  Don't we all have people who tell us things because they care.     Yes, we do.  Even you, J.D. Salengers  -if you lock yourself away, your inner voices will get to you, eventually.

Here is a great example of some bad advice I received in the 90's:

"You know Karen, you should try cayenne.  It's great for circulation".

Yes, it sure is.  Not only is it great for circulation, it's a great way to exacerbate reflux, a common related condition to scleroderma.  Oh yeah.  Good times.  Forest Gump once said to Jenny, "Sometimes, there just aren't enough."   He was right about that.  Yep.

Out of all the advice and recommendations we receive, no advice should be listened to and tried more than the advice of our own doctors.  Sure, we all run into quacks, but we shouldn't be discouraged.  Most doctors got into it because they wanted to help people.  Some loose their way, but many truly want to do their best.

Listen to fellow patients, talk with friends about your treatment if you are about to try something new.  Go over the risks and benefits.  ALL medications and treatments have side effects.  You will never know how they will effect you, if you don't try them.  But before you do try a new treatment, do your homework.  Seek out fellow patients and learn from their experience.  Know what you are about to put into your body.  A chronic illness has a great way of making people feel helpless, but we are never helpless.  We may not get the outcome we want, but we may get the outcome that works, even if it takes a few adjustments.

So, if you skipped to the end:

We all get lots of unsolicited advice.  Of all the advice we get, the source we should listen closest to is our doctors and medical practitioners.

Yes, we have to try many things before we find what's works and you'll ask, "What am I, a guinea pig?!

Don't despair.  Here is Randy, in "Honebadger Narrates The Guinea Pig" - Oh how precious!

Stomach Acid: Inspiring, Isn't It?

It's 4:20am and I have just spent the last 20 minutes gargling and rinsing after waking up lying flat with a mouth full of stomach acid. You see I fell asleep on a stack of pillows practically sitting up, but gravity had it's way with me last night. It's been happening frequently on my vacation because I forgot to pack my wedge pillow. This time it was so awful, I'm too freaked out to go back to sleep.

I have to admit, I don't follow all the rules of Reflux. I have coffee in the morning. Occasionally I eat onions. Last night, I had Ice cream. I usually do not eat at least 4 hours before going to bed. I was planning on staying up to watch the movie Paul with my brother, but I crashed while I was putting my son to sleep. He's on the tail end of his separation anxiety phase and until he's completely asleep, he's got a death grip on my arm.

He's about to start the school year next week. He's progressively getting better and will soon have no problem falling asleep on his own. I know I'm supposed to just let him cry himself to sleep, but I just can't. To be honest,I have separation anxiety as well. He stays with his dad every other week. I hate joint custody. I feel like I'm cheating or something because he's with his dad 2 weeks out of the month. Shouldn't I be enjoying my free time?

I think the root of the problem is that deep down I feel like I will be making up for time I haven't lost yet. Let's be realistic: I have two progressive diseases. I plan to live another 60 years and although I don't believe in God I can still hear her laughing.

I'm afraid of what I might miss, so that extra 8 hours a day I spend with him while I'm sleeping will somehow make up for it. I also take every opportunity to drop some knowledge on my son. He has a great vocabulary for a 7 year old. I don't give him nick names for private parts when he asks me where babies come from. I tell him the truth about how he came into this world 8 weeks early, but it's a happy story because I got to meet him 8 weeks early. It's amazing how one can learn to spin a story about an event that scared the shit out of my family, into an amazing story of how strong I believe this little boy is.

You see, although my health is an ongoing sometimes soul suckingly depressing fact of my life, I am one of the lucky ones. We all know someday we are going to be gone from this world. Anything can change in a minute. No different that a completely healthy person stepping in front of a bus. But for me and probably many like me we are very aware we are living on borrowed time. Every minute is a gift. I've squandered my share, but to finally get to my point, I use every teaching moment I can with my son. I also forgive myself for giving into his separation anxiety issues at night when he goes to sleep.

This started out as a rant about Reflux, but like any good therapy session, it shined daylight on the underlying issue. Not my son's separation anxiety, but my own. I make any moment I can a teaching moment and just for now, it's okay to indulge myself by listening to him sleep at night. This phase is in it's transition with him. He will be going to bed on his own anytime, but just for now I'm going to take advantage of the extra hours I get with my son, even though he's asleep, because every moment is a gift.