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.  

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!

Yes, It Looks Scary, but it Will Grow Back...

I've had a wound /ulcer /hole in my knuckle for a few weeks now.  I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.

I have to say, the hole was huge two  days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely.    Inside the hole it's just gross, but very clean and rarely oozing.  With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words:  I still need to go before the Jedi Counsel.

For those of you experiencing ulcers from impact, calcinosis or Raynaud's, I'll post pictures of the wound progression in Pinterest.  These wounds can be scary and insanely painful- I don't have to tell you that.  I want to post them so you know that you are not alone.  When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally.  Not that these wounds are normal.  I do have a choice to avoid them.  I live alone and I don;t like asking for help and I love to get  out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still.  Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care.  I have accepted it as a very painful inconvenience.  I get a sore, take care of it and roll with it as it heals.  I can focus on how much it sucks, or I can tale care of the wound and focus on life around me.  It took years for me to get here.

A few of my favorite things... and I don't feel so bad...

If you are new to these ulcers, learn to take care of them.  Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape,  Colband and cause.  Yes, stockpile and squirrel away.  Never  turn down free wound care supplies when you can get them.  Saline solution is outstanding for  rinsing wounds.  Saline filled syringes can be reused to help rinse.  In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going.  I am to go before the Jedi Counsel for guidance.

Have a great day everyone!

PS:  instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them.   They will be up Saturday, but connect with me on Pinterest if you happen to be there.

The bandages always make it look bigger than it really is.  This is quite comfy.