Pain Management & Scleroderma Part II

Or:  Who Beat Me with a Bag of Oranges?

Yesterday, I got all happy in my post about managing my pain, so this morning I woke up hurting.  Not because of Murphy’s Law or I jinxed myself, no, I am not that powerful.  Scleroderma bestows upon those of us who have it a superpower to predict the weather, before we look out the window.

So yes, we went from sunny California, to rain last night.  Those of us with rheumatic  diseases like scleroderma or of advanced age, can feel changes  in barometric pressure.

My grandfather used to say, “Karen, it’s going to rain.  I can feel it in my bones.”  He could predict the weather better than the most seasoned meteorologists.    I do miss his old school brooklyn accent *sigh*.

So, this morning when I woke up, it felt like someone came in last night and hit me with a bag of oranges.  I opened my eyes and thought:  It’s raining,  yay.

I live in a one story apartment, so I no longer use this example to describe my weather change sense super power:

Gnomes put me in a canvas bag last night; dragged me down then back up the stairs, removed me from the bag and lovingly tucked me back into bed while I was sleeping last night.

So, how do I deal with the pain?  
This is not a 1 Vicodin day.  It’s a 1 Vicodin as needed day.  So, if anyone needs me, I’ll be on the couch until the pain meds kick in- which may not be enough to get me off the couch.

But Karen, You Said You Were Stable?
Yes, I am stable.  My disease is progressing slowly and my condition is considered stable because it is manageable with medication.  So that means I didn’t loose my “superpower” to predict the weather.  This is a great example of how the best possible outcome, is not always the outcome I really want.  It beats the alternative, so I’ll take it.

What about Medicinal Marijuana?
That’s a whole other post, but here’s the short version:  I get paranoid.  It works for the pain, but the paranoia completely undermines my productivity.  I get nothing done hiding under my bed.

Do you have a colorful way to describe you pain?
Please share your “gnome” or “bag of oranges” examples.  Laughing at what scares us only makes us stronger.

Circa 197?. Little did we know that we would have weather predicting super powers.

Thanks for reading!

Pain Management with Scleroderma

 

 

 

If you missed the Treatment Diaries Chat about Scleroderma on 3/5/2013, we talked briefly about the stigma of pain medication.  (check it out HERE

“I don’t want to depend on pain medication.”
Sometimes, it’s what we need to do.
Stop the pain medication stigma already! 

We’ve all said it.   Of course, in a perfect world where debilitating pain is temporary, that would be a valid statement.  But I don’t live in that world.  Pain medication keeps me functioning and makes it easier for me to move around.  I have reached a point where I can exercise.  Overall, I feel good, but the truth is: I am in constant pain.  It’s decreasing the level of pain that has allowed me to function as highly as I do.  Pain medication makes my level of pain tolerable enough to function.  Functioning leads to doing things like getting dressed, leaving the house, finding an activity I like to do and doing the activity.

This did not happen overnight.  As I had mentioned in the Treatment Diaries Chat, in early days of my scleroderma diagnosis, I used alcohol for pain relief and depression treatment.  “Not ideal”, is a gentle way to describe that choice, but it was my choice nonetheless.  I was in college and drinking fit my budget and was lot more fun than standing in line at the pharmacy.

Later, I moved on to popping Percocet like Pezz.  Also not the best choice.  The “nice” thing about using Percocet was it did make me feel pain free, but like everything, it did not last and it came at a cost.  Yes, I felt no pain, but it also created another problem:  I was loosing my range of motion in my hands and wrists.  The “S” in CREST Syndrome, (Limited Scleroderma) is sclerodactyly.  My hands were contracting into a claw and my wrists fused.  I could not feel the changes and because I felt no pain I was more likely to engage in activity that would cause injuries to my knuckles and wrists, breaking open the skin on impact into various obstacles.  

Because my hands were curling into a claw, I had to learn my limitations.  Pain, although something that sucks, is a tool to let our bodies now when something is wrong.  Because I could not feel the pain of my hands contracting, I paid little attention to the changes and I did not take proper precautions to protect my hands from injury.  Of course I can’t protect anything from all injures, but there are injuries that are preventable.  Let me give you an example using a dryer handle.

Today, I have a stackable washer/dryer unit in my apartment.  I use a big silicone spoon to open the dryer door.  (See this Turtle-ism to learn how the “right” tool is entirely subjective)  I use the spoon because it hurts to use my fingers to open the dryer door.  Let me walk you through a scenario that makes opening the dryer door without a tool a problem:

Back when I was using Percocet, I would have kept using my fingers because I would not feel the initial pain after using my fingers to open the dryer door.  I would not be motivated to find a tool instead.  Not using a tool would result in injury.  I could overextend tightened skin and atrophied muscles in my hands.  Eventually, a pressure sore would appear and I  could do something unrelated to dryer opening, like bump it on the kitchen table and the my skin would break open.  From there, we’d move on to a sore that would heal slowly and be susceptible to infection.  And that’s a whole other post, but that’s an example of the path of total pain relief for long term chronic pain.

Another problem with “feeling no pain” is tolerance.   I LOVE feeling no pain.  And I don’t mean high or buzzed, I mean feeling NO pain.  But, in order to keep feeling no pain, the dose of pain medicine needs to be increased as tolerance builds.  Next thing you know, you’re taking enough pills every day to drop a three hundred pound Sumo wrestler when you realize the pills have stopped working.  So, you stop taking the pills and wish for death while riding the roller coaster of withdrawal from opiates.  If my husband (at the time) was not kind enough to put me in the car and drive around for hours while I hung out the window like a puppy, I would not have been able to follow through with stopping the Percocet.  I had the tolerance and I was one step away from complete addiction and abuse.

It was still no picnic after I kicked Percocet.  I still had to deal with the constant pain of scleroderma.  The pain medications were masking my depression.  The grief of loosing the use of my hands to scleroderma was so overwhelming, I stopped eating.  Luckily, my scleroderma and all medical conditions are covered by socialist Veteran’s Healthcare.  After dropping to 96 pounds fully clothed, in combat boots, I visited the mental health department of the Veterans Hospital for treatment of severe depression and anxiety disorder.  (For more info, read HERE)

After treatment with medication and therapy, my depression is managed.  Eventually, I became a mom, then was diagnosed with sarcoidosis.  During that time, I accepted  that if I wanted to be present for the good times, that I had to leave the house in pain.  And once I got out, I started to feel better.  There were many times that being out did create more pain ad I did go home early, but I learned to “celebrate” that I did indeed go.

This was a long journey and I find it difficult to explain every aspect in a shot blog post, so I will elaborate more in future posts.  What I hope you who are reading take from this is, the best outcome may not be the outcome we want.  It’s like the movie Groundhog Day.  Bill Murray’s character is trapped.  There is no escaping February 2.  But once he learns to make the best of his situation and exists in the realm of this situation, he then finds freedom and peace within the situation.  Living February 2nd is not his anticipated outcome, but Bill Murray’s character finding happiness accepting his life reliving Ground Hog Day,  every day, is the best possible outcome for his situation.  Life with scleroderma and starting my day with one Vicodin to take the edge off the pain while getting dressed is not MY ideal outcome, but it is the best possible outcome.  Because I take that one Vicodin, I follow through with getting dressed.  I don’t stop and put on sweatpants instead of jeans and go back to bed, overwhelmed with pain.   I’m still in pain, but it does not get worse and my stress level remain low because my pain is controlled to a point I can tolerate.  I shower, do my hair, get dressed and begin my day.  Anyone who has trouble buttoning their own pants or holding a blow dryer knows what a long and tedious process this is. But once I conquer those daily activities,  I feel motivated to continue my day and do something.  

Yes, I do depend on pain meds.  I’m not ashamed or afraid of being judged.  I use them as they are meant to be used by someone with a chronic, soul sucking illness like scleroderma:  I use them so that I can function at a level that enables me to be a good mom to my son, and be there for him.   And I plan to be here for him a long time.

Thanks Scleroderma;-)

So yesterday’s post turned out to be 100 here.  Yeah, I phoned it in, but I am totally using my scleroderma card.  But, just because I whipped out the scleroderma ouchie cared, doesn’t mean I’m going to let it stop me.  I’m way too smart and stubborn for that.

I’m not going to stress it.  See, I had planned a great post that required transcribing an interview, that I have been putting off since August.   Then, my thumb which I use to type with, started planning its own escape.  Seriously, the Raynaud’s just in that thumb was off the chain.  So, I had some crummy voice software and now I’m finally getting something good.  So, my post that I have building hype over is still coming.  I’m just finally accepting that I can write with voice software.  I love to type and I do things that are difficult out of sheer stubbornness, but now, this whole typing with my fingers thing has moved to harmful denial.  My thumb had to start an escape to signal me a clue.  Message received, Thumb.   Message received you short, stubby two knuckled, $#%$#@.

 

While You Are Waiting…

Happy Hump Day All!!

I’m working on a post that requires transcribing of an interview- I know, I should probably get some updated software, but for now, I’m using my thumb and index finger and having a great time!  Seriously , I am.   And while you are waiting, please check out some great blogs.  Some I have mentioned and some are new to me too!

Living With Scleroderma.com

Life WithSarcoidosis.com

Honest Toddler

Life Your Way!

Emo Squirel

I have more to list, but I have to scram so I will share some more tomorrow.  Have a great day everyone!

-Karen

Introducing… Turtle-isms!

Welcome to the first edition of Illustrated Turt-isms!

Behind the scenes of a Raynaud’s attack.  Raynaud’s is a symptom of Scleroderma CREST, Diabetes and more.

A raynaud's attack shwing creatures choking blood vessels, then Viagra stepping in to save the day.

Raynaud’s: Defined as an overreaction by the sympathetic nervous system in response to cold. But this is what I think is really going on.

Illustration by Chris Dean of Life Your Way!
Written by Karen Vasquez
A DeanSquez Joint

The Virgin Diet Book Review (kind of), My Sexy Liberal-ness and Why The Mighty Turtle is Not a Business or Non-Profit.

This isn’t your every day book review.    I am writing this because I read The Virgin Diet, by J.J. Virgin and I am making some changes based  what I learned from the book, my experience and research.   I learned of J.J. Virgin from an hour presentation she did on PBS.

So, after two weeks of fast food and processed snacks; a month of reading and research, I have decided to follow The Virgin Diet for 21 days.  I’m trying it because I still have symptoms of scleroderma and sarcoidosis that seem to get worse when my diet has more processed foods in it.  Why not cut out processed foods?  It’s not that simple.  Foods often identified with health are processed; like  Whole grain cereal, tofu and more.  I chose the Virgin Diet because the author offered an easy to read guide to making the 21 day transition, what foods to eliminate, and how to reintroduce them.  I also like this approach because it’s not vegetarian.  I need my protein and I am thankful to all creatures for generously keeping me alive.

An english muffin

Dear Bread,
I love you and I miss you deeply. See you again soon.
Love, Me

Another big change for me:  I have been using Isagenix shakes since 2007.  I have trouble absorbing food and I notice a remarkable difference in pain and inflammation when I am unable to get the nutrition I need if I don’t start my day with a protein shake.  I changed to the Virgin Diet Shakes from Isagenix.

One  thing that always bothered me about Isagenix is the multi-level marketing approach they have.  I believed in the product but I had a heard time endorsing it because I did not want to use my illnesses to market it.    Yes, I may be my own worst enemy, but just because something works for me, doesn’t mean it will work for everyone.  I saw it as a conflict of interest.  Sure I have scleroderma and sarcoidosis.  Sure Isagenix helped me, but I could not bring myself to drag Isagenix into raising awareness of scleroderma and sarcoidosis.  I don’t want anything  exchanged anything except information.  Does that make me  stupid?  Maybe, but this is not a business model.  Many others and I are in the fight of our lives.  Scleroderma awareness and sarcoidosis awareness is every day for us.  I am lucky enough to be able to write, go to my doctor’s appointments and say whatever I want.

Right now, I am lucky to have my Veterans Benefits and Social Security.  Many patients in my position are fighting to get Medicare and Social Security.  I know my perspective is somewhat unique as a female veteran in the Veteran’s Healthcare System for 18 years with rare conditions.  I have had opportunities to join or start up non-profits and make a salary, but then my opinions are subject to those who write my paychecks.  I have learned a lot about social networking and plan to do stuff on the side when I am able; but for now, I am fine with my Veteran’s Benefits and Social Security.  The Mighty Turtle is not a business model.  I like being free to say what is really on my mind.  And I don’t have to hide my Sexy Liberal-ness .

Back to the shakes:  Another reason I switched shakes is that Isagenix uses whey protein.  yes, there little to no lactose in it, but whey is dairy. Dairy is one of the items to cut out of my diet for 21 days.  I want to know if dairy has any effect on me, so in order to do that, I need a shake with no dairy- plain and simple.  I do think Isagenix tasted better  initially, but Virgin Shakes have grown on me.

So, why not a soy shake?  Soybeans are genetically modified.  They grow into things nutritious like edamame and turned into tofu. Soy is talked about in detail  in the book, The Virgin Diet.  Those seeds are sold to growers from companies like Monsanto.  (In fact, if you do the research, Monsanto is everywhere.)    Remember Proposition 37 in California?  Monsanto fought hard to stop labeling of foods grown with genetically modified organisms or GMO’s.  That was no coincidence.  So, soy is off the menu for 21 days.

Why such drastic changes in my eating habits?  Well, it doesn’t seem so drastic once broken down.  I have the discipline to do this for 21 days, I just need to use it.  My diet/eating habits, although full of protein shakes, consists of almost no vegetables.  When I looked at my eating habits in detail, I was getting almost all of my nutrition from dairy products.  Why not tweek things a little and see what happens?  What if I feel less stiff in the morning?  What if I find I have more energy when I exercise?  I’m not exactly in remission, but it couldn’t hurt to tip the scales in the direction of even better health so that when I do get a flare; my body can handle it better.

A bag of frozen, individually wrapped chicken; frozen broccoli; frozen salmon and coconut milk for my coffee. New year, new fridge; why not?

I already  know that processed food is not good for me.  At my last infusion, I ate a Keebler “peanut butter and cheese” cracker snack.  After, I had to sleep before I could drive home.  Other than scleroderma, sarcoidosis and major damage to my hands, I am pretty stable in my symptoms and the progression has slowed down.  It’s a new year and I find myself in a new apartment with an empty refrigerator.  I think it’s a great start.  So, I will post every now and then about my progress and then the eventual outcome.  Until then, I will keep wishing my boxes to unpack themselves, and maybe post a few love letters to bread.

 

 

For more information:

Caring Hands Sarcoidosis Network of Michigan

Scleroderma Research Foundation

Scleroderma Care Foundation

Project Scleroderma

The Scleroderma Foundation

J.J. Virgin on Facebook

Chronic Pain Management, Scleroderma, Sarcoidosis and Moving

This is a quick post before I get back to unpacking:

How am I making it through this week of moving?  Lots of help of course, but I am not standing around and pointing.  I’m using my hands in ways I normally don’t.  The damage from sclerderma has limited me from doing things I wouldn’t normally do daily, but in times like moving, it;s necessary to do things that will cause pain and damage.  The reason I do things I wouldn’t or shouldn’t do- this is temporary and I will have time to recover.  Yes, I am fiercely independent (my brother’s words) and stubborn.  I want thigs done a certain way and I do not hesitate to jump in and do them.  How do I tolerate the pain while doing them?

Drinking an extra protein shake between fast food meals and Vicodin daily.  Normally, I don’t take Vicodin throughout my day, but moving is not normal and ny yoga routine is on hold until I get settled.   It moving sucks: It’s full of unanticipated events, processed foods and stress.  So, I take Vicodin throughout my day at a low dose to keep the edge off.  I don’t tae enough to numb myself from pain, because although it is uncomfortable, pain is how our bodies signal to us us we need to stop or slow down.

By keeping pain levels down,  I am also preventing a flare of the granulomas of sarcoidosis inhabiting my lymph nodes in my chest, allowing me to keep breathing at my normal capacity and preventing an avalanche of symptoms from difficulty breathing.

Thats the short version.

I get comments about pain meds being bad for everyone.  Yes, they can be if abused.  If used properly in pain management, they are a tool to stay active through stressful life changes and activities.  There is such a stigma about pain meds because there is so much abuse.  I’m posting this to share how I am not letting a stigma keep me in pain because, “I don’t want to depend on pain pills.”  I don’t “depend” on pain meds.  They are a tool I use when needed; and I use the right tool to get the job done.

Happy Friday!

Happy New Year!

Well, it’s lucky ’13.  I hope your ’13 is going well.  There have been some great changes for me.  I am in the process of relocating to an apartment.  Moving is “fun”!  I need to acknowledge my family and friends who have been helping.  They are generously tolerating my apprehension to ask for help and still helping at the last minute.  What kind of devotee to The Church of Perpetual Procrastination would I be if I had my act together on time?  No.   I am many things, and one of them is being consistently late.  (Is that two things?  Consistent and late?)

This post is to wish all of you who continue to show support for scleroderma and sarcoidosis by sharing info and reading this blog, a Happy New Year and  thank you for continuing to read and share.

If you get a chance, please visit The Mighty Turtle’s new Facebook page.  I am keeping Scleroderma, Sarcoidosis and Box Wine up, but I will continue posts on the new page because it’s easier for people to remember and spell.  I want to raise awareness and educate about scleroderma and sarcoidosis and part of that is getting people to visit links that are easy to spell and remember.  If they are easy to spell and remember, people will visit more and they will learn the spelling of scleroderma and sarcoidosis in that way.

Thanks for reading!

Sea Turtle making his way through his habitat in Monterey Bay Aquarium

And don’t forget to tell your friends about the page!  Now, it’s time to do some cleaning, packing and unpacking in my new habitat.

A Kid’s Book About Scleroderma

‘My Mom’s Special’ By Andrea Oakland

By Karen Vasquez

One of many challenges faced by patients with scleroderma:
The effect on the children of patients.

The story is told in the voice of a young daughter about daily life with her mom, who has scleroderma.  There is no talk of flares or emergency room visits.  I love that about this story.  There are plenty of stories of complications and very few are just about a regular day with scleroderma.  The scary stories are a familiar occurrence to scleroderma patients, but they are only a part of the story.   The long haul with scleroderma really is about acceptance and finding a way to be a part of life with loved ones.

The beautiful illustrations show the pigmentation changes, hand contractures and facial features in a gentle way.  Changes from scleroderma are rarely shown in such a gentle light because it is hard to photograph. These illustrations are another welcome change and by the end of the book, the distinctions between characters without the facial features of scleroderma is difficult to notice.  As though the illustration makes those features look “normal”.  For a scleroderma patient, that is normal and it’s nice to see that blending as opposed to the often harsh distinctions shown in photographs.

Yes, this is a fictional tale, but kids love to help.  I see it in my son and I have seen it in other children of parents with or without scleroderma.  The bottom line is no matter how sick we get, how crazy things seem to be and how much our kids complain about taking out the trash, they love us and they will help.

We need more stories like this to remind patients and their families that life does not end with a diagnosis of scleroderma.  Raise awareness with this book.  It’s about Scleroderma, and the very capable child in all of us.

 

“My Mom’s Special”
Written by Andrea Oakland
Illustrations by Meredith Allister

For more information:
Get your copy of My Mom’s Special. Here  All proceeds benefit  the SRF research program.  It makes a great gift or donation to your local library to help raise awareness.