Back To The Beginning, Again. An update about my exercise activity with scleroderma.

This a follow up to a post I wrote in 2012.  I almost started fixing typos, but realized what it really needed,  was an update.  I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication.  There was a great deal of damage done to my body, including my lungs that are scarred, known as pulmonary fibrosis.  


Lesson Learned.

After spending 45 days in the hospital to save my foot, I am now faced with the challenge of returning to exercise on a routine basis.  As much as I would like to go back to Krav Maga class, this will not be happening anytime in the near future.  I blame the horrid infection of my foot on just thinking about training for a 5k.  All kidding aside, the infection was bound to occur, but it may have been prevented from such a drastic course with proper shoes.  I thought because I was feeling so great, I could take a chance and wear something more stylish.  That was my mistake.   Now, I have this wonderful reminder to not push that good feeling.  Message received, Universe.  Message received.  (You can’t see this, but I just looked at the sky, raised my hand, and impotently shook my fist in rage.)

 

 

Back to one, deep breath

One of my biggest lessons, of many from this past hospital stay is there is no such thing as a last chance for me.  I changed my way of thinking of my hospital stays.  I have always understood that they will be part of my life, but when I would leave, I would think, “This stay will be the last time.”

 

This time, I had enough time to realize that there were so many things I could not anticipate, that I cannot think of any time in the hospital as my last time, and my recovery my last chance.  Yes, after 20 years I understand that I will get knocked down, but I’ll get up again.

 

Hope helps, but knowing I’m going to recover helps more, because it’s not a matter of “if” it’s “when” I feel better.

Of course I cannot predict the future, but I can have a positive outlook.  Not unrealistic, just more than hopeful.   never hope I’m going to get well.  I know I am going to get well.  And even though we never really “know” everything, it doesn’t hurt to act as if I will have a full recovery.  People would say to me  “I hope this gets better for you.”  My reply was usually, “I know it will get better.”

 

Positive thinking helps, but I must do the work it requires to get better.  There is nothing wrong with being stubborn, and I am living proof.

 

So, about the exercise…

I’m working with a trainer to build my strength from the inside out.  Along with strengthening the large muscles, I must work on the small ones as well, especially my core and upper body. Right now, I am using light weights and rubber bands.  These exercises may look small, but I can feel he work I’m doing.  The exercises I do are no impact where my feet are concerned, and since I have lots of work to do on my core, there is plenty to keep me busy until I can do a full plank again.

 

It’s not easy, it probably won’t be the last time I need to restart, but starting again is so worth it.

It’s Not So Bad, If You Enjoy Walking into a Cactus.

 

This part’s a little gross.  If you’re eating, you may want to skip to the next section…

Over the weekend, I had a sore on my foot.  It turned out to be a blister.  My original fear was it was one of those lovely calcinosis sores and luckily, it wasn’t.  It did become infected, but it was an external infection, so  I was able to soak the infection puss out.  Then I removed the dead tissue with sterile small scissors found in suture removal kits, called debreeding. Debreeding must only be done by a trained healthcare professional.  (Remember, I am a Wound Care Jedi.  I was shown how to do this in 1996 and I  have nearly 20 years of experience. DO NOT TRY THIS AT HOME)  If you visit your doctor, you can ask for a referral to a wound care clinic (or something like it).

 

Beneath the floppy dead tissue of the blister, was beautiful  healthy skin, instead of empty space and more fluid I have found  in hundreds of sores on my hands.  This tells me my feet are getting the nutrition they need from blood.  Now that a hospital stay is not in my future, I can focus on preventing further infections.  It started as just a blister, but it became infected because I have been wearing flip flops around the house and outside.  The bacteria that infected my blister may have come from needing new flip flops, or dirt and crud on city streets.  (ewww)  Most peoaple can wear flip flops, but I am on immunosuppresant drugs and sometimes washing my feet is not enough.

 

Time to Heal 

It would be ideal if I could sit here with my feet up and not move, but that is unrealistic.  Not only because I have responsibilities, but getting up and moving around helps my attitude, even when painful.  My experience has been that healing is more painful that the infection, but if I let pain keep me down all the time, I wouldn’t have moved for the last twenty years.

 

When something is painful, I classify pain as a type, and base my execution of activity on precautions and adaptation needed.    I don’t have a set classification scale, because it has changed over the years because every now and then I get a type of pain I have never experienced that requires my getting use to it before classifying it, but here’s an exapmle of the types of pain classification I use:

 

1.  None.  Haven’t experienced this one more than a minute or two at a time.  I equate “none” to unstable synthetic elements that have half lives that range from a few milliseconds up to a year.  Short lived, but does exists.

 

2.  Background Pain.  Present, but hums in the background with little interference in daily activities that are not limited to occasional a three second “pain face”.  Yes, it hurts but I can tune it out.

 

3.  Manageable.  Pain that requires pain medication to function.  Funtion-ability returns once the meds kick in and returns pain to status of background pain.  Rarely does pain at this level return to “None”, because the medication is strong enough to take the edge off, not dope me up.

 

4.  Ouch.  Needs pain medication and rest.  Pain medication levels required to knock the pain down to none and rest is required until activity can resume at a back ground pain level.  This usually takes a day and a half.

 

4.5  Holy Ouch.  Infection or injury needs to be checked by a doctor and treated with antibiotics.  Possible request for stronger pain meds.  I made it half a point higher because there is a fine line between ouch and Holy Ouch.

 

5. Level 5.

 

Pain is so high at this level, it requires a name in bold font, a picture and no less than a morphine drip.  Whatever is going on requires a trip the the doctor or  emergency room, that usually results in hospitalization.  With a Level 5, I would be in less pain had I run naked into a cactus.

 

Level 5 has become rare for me because of my ability to prevent injury, or early detection of infection.

 

 

Current Condition: Ouch.

The degree of this pain is mostly tolerable, but because of the location, I must rest more than I normally would.  It’s much easier to guard a hand than the bottom of my foot.  So today, I will spend it resting with my foot elevated.  This means when I do walk today,  I will walk a little slow.  Every now and then I will make a face, but other than my foot, I feel great, so it makes this workable.  And since resting all morning, I feel better.  I know that more rest today will result in faster healing because the skin the bottom of my foot will not be disturbed that much.

 

Tomorrow, I have a doctor’s appointment with the rheumatologist who was concerned about my ability to be able to shave.  Her mind is in the right place.  Had I read my chart from a doctor’s perspective and never met me,  I would not have expected someone so active to bounce into my exam room.

 

Helpful Healing Practices. 

Times like these when just one variable can turn tip a situation into a full blown hospital stay, I pay attention to things I can change, like diet.  I stay away from junk food.  My diet will consist of healing foods high in protein.  I will stay away from processed foods and drink lots of water.  I know what foods increase my chance of swelling and slow healing through experience.  Everyone’s body is different.

 

There is no secret to managing a chronic illness and living longer with one.   I am not a doctor, and I can only share with you what has worked for me.  Being a vegetarian is not one of them.  Without animal protein, my skin breaks down.  Soy protein in things like tofu or shakes increases my inflammation.  Sometimes it’s luck.   Most of it is as healthy a diet as possible, exercise and outstanding access to the healthcare I need with no financial barriers provided by The Veteran’s Administration.  I have to fight for things at times and even kick down a few doors, but because the VA system is a socialized one, it is not limited when I advocate for myself.

 

Pep Talk.

To fellow patients: don’t give up.  We have to fight for treatment.  Yes, it sucks but complaining will not solve this.  We need to get the information to the person who is blocking us from getting the treatment they need.  It’s hard not to make it personal.  I have a lot of practice loosing my cool.  It took me years to work from a position of, “This person does not have the information he/she needs.  It’s up to me to get it to them.  And I have to be patient and persistent.”  I spare no use of foul language at times talking to myself about this, and yes I consider that a coping mechanism.

 

 

Chronic illnesses are not always the cause of death.  Sometimes it’s financial resources.  

One reason I shout about healthcare reform and politics, is because I know that I would be dead had I not had the access to healthcare I do.  I know that many other patients with scleroderma have died because their insurance would not approve the best possible treatment, only the least expensive.  And it’s not just scleroderma patients.  I’ve read about Lupus, sarcoidosis, MCTD and too many diseases to name here who have died because of financial barriers.

 

So, if anyone needs me today, I’m relaxing and watching some TV with my feet up.  Have a great day!

 

Want more?  Find me on Facebook

 

Paraffin and Scleroderma: Comments on an article about scleroderma.

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.

picture of oils for skin moisturizing in various   containers

Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have “essential oils”, but if they come in a plastic container, they are not true essential oils.

Undiluted essential oils should  only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can  nourish moisture starved skin because it will penetrate, not coat.  Essential oils can appear more expensive, but you need less of the product.  To find the best essential oil for you, don’t be shy about asking for samples or asking for a low priced sample to take home and try a few days.

Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one.  I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin.  Currently, I use Votre Vu’s Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it.    If you have something that works, don’t go searching for an essential oil.  (If it ain’t broke, don’t fix it.)

Ahhh, Paraffin.  It is nice…
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought…)  was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients.  A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits.  A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath.  When I first started exercising again in 2005, I would take a shower before and after.  Warming up those muscles before warming up, is good for body and mind.

The professional manicurist in me speaks up: 
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.

1. Patients with raynaud’s have a bigger risk for burns with paraffin. If one with raynaud’s were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud’s patient may not be able to detect the bath is too hot. Thermometors can fail.

2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.

Tips for using a parrafin bath for patients with Raynaud’s:

1. Place hand in plastic paraffin bag, then dip bag into paraffin.

2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don’t be discouraged by a little mess)

3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.

4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.

Never, EVER use paraffin wax when you have an open wound or pressure sore.  Yes, even a paper cut.  Don’t make me show you pictures of infected wounds- it’s nasty!

For more information:

Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.

Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma

Raynaud’s Risks and Prevention

The Scleroderma Society

Tips for Living with Scleroderma, by Scleroderma Research Foundation

To help fund research for scleroderma, visit: Bounce to a Cure

FAQ for Raynaud’s by The Raynaud’s Association

Handy Hints for Raynaud’s by Raynaud’s & Scleroderma Association, UK

Visit The Mighty Turtle on Facebook for more scleroderma organizations.

 

Why I Am Not Scleroderma

Dog barking with caption: "some days, we just need to get our bark on."

 

Yesterday on Facebook, I expressed my disappointment with  I.Am.Scleroderma campaign.   I do like and support the foundation who did it, because so many patients benefit from their work.  I am not happy with that campaign. You might ask, why not send a letter?  Well, I had a thought, expressed it on Facebook and wondered if other patients felt the same way.  Plus, I don’t post to make any friends,  I just post honestly.  I was told once I should think in a more marketing perspective by a former so-called mentor.  We no longer speak and it was a very smart decision, but that’s a whole other post.

I write to get conversation going about not only scleroderma & sarcoidosis, but also associated conditions like  pulmonary hypertension, Raynaud’s Phenomenon and mental health.  So, in the spirit of Scleroderma Awareness Month, and my slacking last year by not speaking out when the I.Am.Scleroderma campaign started, I want to explain to you why that statement offends me so.

This is not an attack on The Scleroderma Foundation.  This is my disagreement with their choice of wording for a campaign.  Since deciding to independently volunteer to raise awareness and have no attachment to any non-profit, I have the luxury of speaking from my heart, and not from a marketing perspective.  I have nothing to loose by sharing my feelings, because that’s all they are, my feelings.    They will not buy or sell anything.

Anyone who sees me is free to cuss me out for saying what I feel about the meme.  Please comment.  I will moderate, but as long as there are no racial slurs or snake oil, I will make sure it is visible.  See, it’s not the sharing that was encouraged by the campaign I dislike.  I read some great posts by patients and saw some great videos blogs as well.  The program is great, but the message is: I am scleroderma.  Putting a period between the words does not lessen the anger that statement creates.  I have sat n my feelings for a year.  One reason was I thought I just needed to calm down.  I haven’t.  So, here is why I am not scleroderma:

I had my first serious complication from scleroderma in 1996.  After two digital sympathectomies, I thought my hands would just return to normal and life would go on as planned.  It did not.  I continued to loose range of motion all over my body.  In the second semester of my sophomore year in nursing school, at then Viterbo College,  I was evaluated for physical fitness to continue on to do my clinical rotation.  As I reached down and found I could not touch my on toes, it became painfully clear that scleroderma was progressing faster than I ever imagined.  I think it was that moment that triggered profound depression and anger.

From that moment on, I didn’t say it, but I thought of myself as scleroderma.  I was diagnosed with depression for the first time and received counseling therapy through the VA in Sparta, Wisconsin.  It took weeks to get to the statement, but my therapist said to me, “Karen, you are not scleroderma.  You are not your diagnosis.”

Skip To the End
It was easy to say, “I am not scleroderma”, but it was not easy to feel.  My actions reflected my feelings for years.  I took a blow torch to many bridges and hurt people who tried to help me in ways I continue to regret.  I have forgiven myself, but I will always regret my actions.  I can’t change them and those actions in my past have opened my eyes to create a better future.

So when I say that I am not scleroderma, it comes from a place I worked hard to get to.   A campaign called, “I am scleroderma” makes me sick.  The name makes me sick.  I can in no way endorse it.  I want very much to share the blogs and videos from the campaign, but doing so shares the message, “I am scleroderma.”  I can no longer find the campaign on the website, but there is a a mess of scleroderma blogs with a Scleroderma Foundation logo with the words, “I.Am.Scleroderma.” on it.  I will read the post, but I won’t share it because I cannot share that statement.  Well I’d share it with a paid endorsement  and a disclaimer that it’s a paid endorsement.  (Hey, a girl’s gotta get her pedicure on when she can.)

Thank you for taking the time to read my  thoughts about a poorly named, but well intended campaign.  My wish when I started blogging in 2009 was to share the message with fellow patents of any illness that they are not their diagnosis.  I learned the very hard way, which has made me cynical at times.  I only hope this post helped to better explain my reasons for hating the name of it and not the foundation.  I will continue to walk and support patients.  I will continue to share their useful information.  I will also never hold back the way I really feel.  Also, I noticed I am unable to find that meme I.Am.Scleroderma on the foundation’s website.  Yay!!!

Cat with cherry tomatoes on paws and balanced on head.
Let;s take a deep breath and remember that we can’t agree on everything. Come on, you know it would be no fun of we did.

Surprise! I have toes!

I have been attending Krav Maga consistently and something happened tonight.

You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I did the “soldier’s crawl” as it was supposed to be done,  for a few moments.

This is kind of how I felt when realized my footing was getting better.

 

I tell myself every day that if I keep moving, my range of motion will come back.  I know it will never be what it was before, but there is potential and now realistic hope my range will improve.

I had another revelation: My toes are not useless.  They’re just fused and different, but they are not lost.

I’m encouraged, exhausted and sore.   The good kind of sore.

What Would Jesus Really Do?

It’s that time of year when Christians reflect on the sacrifice Jesus made for us all.  Honestly, I think many people focus on the torture & death more than his great works.  Look at the symbol:  A emaciated body nailed to two pieces of wood.  That’s not what Jesus was about.  He was crucified.  It  happened to him.  He spoke out and made things happen.  There is a difference.

And Jesus said, “Screw the rapture. You all stay here and keep fighting over guns and eggs. I’m going to a pool party.”

Jesus was about love.  He was about teaching  that we are in this together and we need to be taking care of each other.  If Jesus came back today and saw everyone fighting over guns, while people died of treatable illnesses; no one would be raptured. Not even you, Kirk Cameron!  (By the way… That crush I had on you- totally over it!)

Every day I surf the internet.  Some days I get lucky in the sea of information and ride the wave of a patient’s successful lung transplant or remission, but usually I just drop in on a wave of obituaries, memorial web sites and fundraisers in someone’s memory.

I participated in a chat between Treatment Diaries and Michele Lonabaugh, of  52 Shades of Blue, and something a participant in the chat said, really hit home with me.

Andrew Lopez, RN said: “…most #oncology#cancer research, funding goes to primary cancers, not Mets.#treatdiarieschat

Which explained a truth to me that I have been pounding my head over for years: “The “meat” of research funding goes to the popular  diseases and the scraps go to the ones not so pretty.

You know what I can’t figure out?  That, with all the popularity of making it cool to use the term “boobies” to raise money, wear bracelets and shirts that say “save the Tatas” with all the cheep chachkie’s in landfills; I can’t figure out why people are still dying from tit cancer.

It’s all money.  There is research done that makes amazing breakthroughs.  I am so frustrated because I get all the Viagra and Remicade I need, while others wait for a pencil pusher from an insurance company to tell someone who could benefit from treatment ,that it’s not “in their formulary”.

And why?  Because we don’t want to be communists.  Because we are to stupid and to profit driven and have it ingrained into our psyche at birth, that socializing something  will lead to the end of capitalism.

I know what you’re thinking, “But Karen, we can’t socialize healthcare.  That would make us communists.”

Yes, the worst possible thing that could happen is we will become communists because we cured some people.  God forbid we take care of the sick.  Oh wait… Isn’t THAT what Jesus would do?

No.  Making medicine and care available to everyone who needs it would not make us communists.  Taking care of the sick would make us more Jesus-ey.

So while you are all hunting for Easter Eggs after church this  Sunday, or worrying about the “potential life” in a perfect stranger’s eggs,  I will be wondering if anyone will ever get Jesus’ message.  At least anyone who can make a difference.  Right now, I see a bunch of people fighting over money.  Not care, not health and certainly not behaving like  one who walks in Jesus’ footsteps.  Forget about the rapture.  We would’t deserve it anyway and  Jesus has better things to do, like go to a pool party.

I am so probably going to copyright hell for this. It’s from Funny or Die.

 

 

Let’s actually cure something.  Let’s have all the money go to research,  dispensing of drugs and treatment.  Ron Burgundy movies have, and will continue to provide us with an abundance  of quotes to put on t-shirts, with plenty to say about guns and boobies.

 

U Tube clip from The Guitar Guy

Things Jesus and friends said.

Krav Maga, Yoga, Scleroderma, Sarcoidosis and Feeling Good

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

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

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

Have a great day!

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

The Scleroderma Research Foundation

Bounce to a Cure

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

Caring Hands Sarcoidosis Network of Michigan

Supportive Patient Communities:

Treatment Diaries

Inspire

Art by Chris Dean, of Life Your Way

See her comics at Totally Random Shuffle

Scleroderma, Sarcoidosis and Box Wine

West Coast Krav Maga

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.

Pain, Scleroderma and Activity

This has to be a quick one today, I have an infusion.

Last night, I had a great Krav Maga class.  I felt very good, but I forget sometimes, that I maintain a regular level of pain.  We’ve all been at the doctor’s office and asked to rate our pain.  My reply is usually, ” 2, but nothing out of the ordinary.”

I don’t quite understand the whole pain scale thing.  I can maintain a conversation while  tears pour out of my eyes.  It may be a learned response or capability because pain is such a part of my life.  I still “mope” about it sometimes and I still have days where I am too angry about my hands to do anything but lay on the couch.

That I am able to do things like yoga and Krav Maga may be rare, but I talk about it because it can be done.  My hands hurt constantly.  There are days the pain is mild and days the pain is worthy of a few choice words and some Vicodin.  I don’t share this with people in my day to day life because it’s not that it’s a non-issue, it’s that I have accepted this as part of stuff that just “is”.  It’s going to exist no matter how much I talk about it.  It’s not going away.  I want it to, but it’s not.  And yes, I ignore suggestion to use things like Dragon Speak.  It’s a great program, but it messes with my thinking.  Probably my own rational form of denial to make my life easier, but I never claim perfection in dealing with this stuff.  I just post what works for me and hope that it helps someone else, in some way, of makes a reader laugh.

I’ll try to be brief with my point, and I hope you will ask questions if I am unclear or if I may have tried something I haven’t mentioned, please ask.  My point is, I’m in pain.  I feel better when I move.  I have found a way to move with my pain, but focus on my activity.  The pain comes up, but in my mind I ask myself, “Is this pain present because I am doing something new that is harmful? Or, is it my normal?”  If it’s my normal, I have my own way of focusing on the task.  If it’s there because I am doing something that creates damage or harms me, even though it may be a regular non-painful task for someone else, I find my own way to complete the task or stop doing it and ask for help.  When I do activities like yoga and Krav Maga, I work with people who are trained to show me ways to adapt.  Ways that I can do an activity and achieve an objective without hurting myself.

So, if you look at your hands in the mirror and find yourself surprised by how messed up they look, like I do every day; don’t forget to finish that thought with, “I’m still here and I can still do things.”  Everyone’s experience with loss is different.  Where I am was not an easy place to get to.  I am fortunate enough to have great mental health care from the Veteran’s Healthcare system.  I hope someday everyone will have access to the great healthcare that I do.  I write because I want people to know it exists.  It was an uphill battle for me to get it and I want others to get it without the fight.  Access to healthcare is part of the big picture of surviving the chronic illness fight.  Staying active is a personal fight but it can be done.

Okay, I hope that made some sense.  I need to get going.  I want to explain more, but this will take some time and editing so please continue the conversation with some questions or comments.  Staying active while in pain isn’t easy.  pain meds help, but we can’t be on them all the time and at some point I accepted that being in pain is just a part of my life.  If you have so something that helps you “live with your pain”, please leave it in the comment section.  And if you would like to tell me that this was not helpful, I want to know that too.  Thanks for reading.