Monday, October 28, 2013

And Now, A Pep Talk.

This was taken from a post I wrote and shared elsewhere, then edited into this blog post.  For those of you who don't have scleroderma, feel free to replace the word "scleroderma" with your chronic illness.  We have different diagnoses, but we have so much in common.  Don't let a disease name deter you from an honest pep talk riddled with salty language.  

Greetings Fellow Patients!  
I want you to know how strong you are.  I don't need to tell you all that you are in a fight for your lives.  I write this blog to share what works for me and after reading some statuses, I think some of us could use a good pep talk.   I'm about to speak to you in a manner that keeps me going at times.  I'd ask you to forgive the salty language if it offends you, but sometimes a little  foul language mixed with humor, and blunt honesty, is exactly what we need to hear. Those of you who have experienced boot camp can relate.  (By the way, can you believe people actually pay to participate in boot camp fitness?)  

Cancer Sucks
First, I am so tired of patients complaining about how "cancer gets all the publicity".  No big-name celebrity has scleroderma. A big dose of viagra and lesbian porn couldn't help get a rise with the name scleroderma, it's so unsexy.

When patients drop dead, scleroderma is mentioned in the obituary. Those who the deceased invited to walks and fundraisers for years come out of the woodwork to cry at their funeral, and walk in their memory.  Everyone has a bonding, cathartic moment.  Promises are made to do it the next year in the memory of the deceased, but guess what? Life goes on, which is exactly what the deceased probably wanted.  The deceased needed that love, support and a cure while they were here.   I know, it's a pretty brutal reality, but that's the way it goes.  It doesn't make those loved ones bad people.  We all don't know what we really have until it's lost.

There are not enough months in the year, or colors in the rainbow for the diseases that need curing, treatment and funding for research.
Fundraising is not our fight. Our fight is for our lives. F*ck awareness already.  We are acutely aware of scleroderma and so is our family.  If you want to be aware of my little heard of disease, read about it. If your "friends" seem to act only because they were prompted by a Facebook status meme to get all worked up over a cause, offer to assist them in removing their head from their ass and send an email about your messed up disease they cannot spell or pronounce.  We can't control their response.  If they do nothing, maybe it's to much for them,  so use your energy for something else.  Getting angry because people post all kinds of cancer stuff on Facebook and ignore scleroderma is a waste of good energy scleroderma patients need for the fight.

I've been writing about scleroderma and raising "awareness" since 1994.  Friends and family who don't share my every post, surprise me every now with how they have taken time to learn about my scleroderma and sarcoidosis.  They strike up a conversation that's helpful and supportive outside of Facebook. True friends don't need to share their empathy and support for you.  It's one thing to share something about a patient not close to us, but it's a different ballgame when it's your sister, or best friend.  So give your friends a break.  Or don't.  Just redirect your energy to the fight instead.  Are you patients picking up what I'm putting down?  People care about us and it can be so painful for them they don't know how to express it. And if they think you are faking it or it's "all in your head", unfriend them or make them an acquaintance and move on.

Scleroderma is a big part of our lives, but it doesn't own us. Our fate is not in god's hands until we are dead. We, are not dead. We may be in a great deal of pain, near death, or about to have a close brush with it. Those are facts. It is up to us as patients to be our own best advocate, because this is an orphan disease. Yell where it counts and kick down doors to get what you need. No one is going to do this for us. It sucks- I know. Suck it up and fight. Take breaks when you need them, depend on pain pills because they will help you manage pain. If the pills cause side effects, take the meds to help fight the side effects if it means you get to keep your fingers.  Ulcers do heal! Viagra gives me a headache, so I drink coffee in the morning.  Ask your doctor, (make sure it's one who keeps up with current research) what temporary  things you can to to get those ulcers to heal, or hang in their with that medication that causes side effects that seem unbearable, but preferable to death or gangrene.

We get crazy advice.
Well intended, crazy advice.  For example: "Try  Cayenne  for your Raynaud's Karen."  Cayenne pepper might help circulation, but my epiglottis doesn't close and I can't feel stomach acid from the heartburn cayenne pepper causes because my esophagus is scar tissue.  There is no peristaltic movement in my esophagus, hence making "hot dog down a hallway" an actual medical term.   So remember good buddies, advice comes from a place of caring, but anyone who tells you that you can beat scleroderma with a vegan diet, or herbs is a fucking idiot. Smile at them, thank them for caring and move on. Do your research. See what foods harm or help you.  There is no magic bullet.  If your doctor doesn't know what to do, find one that does and if you can't change doctors, educate the doctor you have. If they don't listen, be persistent.  Eventually, they will have to listen, to get you to shut up.  Be the squeaky wheel.

Friends who feel better because we have it "worse" than they do.  
I hate that.  I hate hearing someone sharing what's troubling them, then feeling a need to say to me, "I don't know why I'm complaining, you have it so much worse."  Unless I am engulfed in flames while someone is sharing their woes with me, I don't have it worse or better than anyone, and neither do you fellow patients.  We are all stronger than we can imagine.  When "shit gets real" we all step up.

F*ck Cancer, F*ck Scleroderma, F*ck Sarcoidosis, F*ck "Name Here"
Scleroderma is not the only fucked up orphan disease that does not get enough publicity. No disease is worse than another. They all suck. If you get an ulcer, don't wait for your god damn fingers to fall off; learn woundcare, debreeding and what drugs you can use to get blood to save as much of that body part as possible.

Be your own hero!  

Just because there is a "worst case", that doesn't mean it's going to happen to you.  FIGHT!

My hands look like shit because Viagra wasn't available to me until 2005.   I battled depression and it nearly killed me.  But you know what I am able to do now? Lots and lots of stuff. Sure I can't play guitar anymore, but I can sing like Robert plant playing the video game rockstar with my son.

Do what you can, grieve what you have lost and move on! You can do this! Stand up to those ulcers and brushes with death. I was not expected to see 30. I'm 43 now. And I've got many years ahead of me. Parts of it will suck. But I won't stop fighting to be here and keep what I've got. And it drives me to get out of bed every day, even when I feel like I've been beaten by a baseball bat in my sleep.

Need more inspiration?  Click here and ROAR.