Sunday, September 14, 2008


"If you want to live your whole life free from pain, you must become either a God or else a corpse". -Menander

Todays blog I seem driven by quotes. I have included so many in my talks over the years and have a passel of them (for you young folks under the age of 100, passel means a lot). I don't know why but most of the points I wanted to make in todays blog , every time I thought of what I wanted to say, up popped a quote in my head. 

For instance. 

When it comes to where we are in my treatment. we have reached a plateau. My pain, what is left of the CRPS portion, doesn't seem to want to go away. It apparently has grown too attached to me to leave. 

Am I shocked? Not really. When I had my low-dose ketamine treatments (2003 and 2007) even though I got into almost complete remission, about 85 to 90%, it never completely went away. I have had this disease for over 34 years now and it is full body. It has had a long time to sink its claws deep into every crack and crevice in every system, cell, and fiber of me. 

Am I disappointed? Absolutely. Every time I try a new treatment of medication I do so with the hope of being free of this monster. 

Will it set me back? Let me put it this way ... 

"Retreat, hell! We're just advancing in another direction."--Oliver Prince Smith

After all, we made great progress with the Hyperbaric treatment. Thanks to Dr Spiegel my CRPs pain is down significantly. Mainly I have the CRPS pain now in my left leg from my knee down to my foot, in my right foot, in my eyes and ears, and then of course the allodynia issue. But, if you had seen my pain chart when we started you would be amazed. My darkened areas, those places where my CRPS was, was pretty much everywhere; both legs all the way, both arms and hands, eyes, ears, face, and of course back, neck, and a few other places. 

So compare then to now!

I have also cut my meds down some as well. That in itself is a good thing as all of you know. I am so sick of taking medication. I have been on them for so many years now and even though I have regular tests on my liver and have blood-work done, I do worry about the effects of all of that.  Not to mention I am just, like many of you, a little over the side effects of some of these things; the tiredness, the sluggishness, the , sleep problems, and, well, other issues. 

But having said that ...

One of my favorite quote and one that fairly well describes me and well, I guess my stubbornness (I am a Taurus after all) is this quote attributed to Calvin Coolidge;

"Nothing in the world will take the place of persistence. Talent will not; nothing is more common than the unsuccessful person with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent."

So, like so many of you I forge ahead because I am too stubborn to turn around. I once was told that I was like a rhino. That they have tough skin and can't turn around, they can only charge forward, can't go sideways, something like that. I hope when they said "tough skin" they meant I was tough and not that my skin looks like a rhino's! Either way, that is what I am going with.

George Patton once said; "Success is how high you bounce when you hit bottom."

Some of us are fluffier than others and probably bounce a little more. (this is evidenced by anyone who has watched WIPEOUT on Fox-TV).  A silly show to be sure but a hoot to watch. 

Of course, there is always the alternate view as espoused by Homer in the Odyssey, "The lot of man - to suffer and die". 

Cheery guy. Unfortunately over the years I have met quite a few patients who feel this way. This disease has hit them, it isn't fair, their life is over; their Doctor told them they are the worst case he has ever seen so they are sure it is so and their live is surely over and they will never get better. They can no longer do what they did, are not who they once were, don't want to hear what they can be or what they might do in the future because they become so mired in what once was. 

At this point it isn't about the physical pain, it is about dealing with the emotional pain and the damage it has done to your psyche.  

So often patients focus on the past, they focus on what they have lost. 

"Never say of anything I have lost it, only say that I have given it back."--Epictetus
"We must embrace pain and burn it as fuel for our journey."--Kenji Miyazawa

I realize it isn't easy to focus on the future, to accept what has happened and accept the new reality. But until we do, we cannot move forward. Until we can do, we cannot hope to begin healing. 

When it comes to chronic pain, especially long-term chronic pain, we may have to give up some of our past in order to gain our future. But if we don't we will find ourselves mired in the past and unable to move forward. 
"Giving up doesn't always mean you are weak. Sometimes it means that you are strong enough to let go."--Anonymous

 Do more than just accept where you are. Move forward. Seek out information, find ways to decrease your pain, find ways to help others, seek out others and together form groups to help others who have to daily deal with chronic pain. 

"Many things which cannot be overcome when they are together, yield themselves up when taken little by little."--Plutarch

It is easy to sit on the sidelines, to let someone else do the work, form the group, gather the people together, form fundraisers, educate the medical community and public, and inform the school systems about our disease. It is much harder to participate, to be involved. To actually lead. Don't think for a minute that those who step into these leadership roles do so because their pain is less. They do it because they are driven to make a difference. 

"Conditions are never just right. People who delay action until all factors are favorable do nothing."--William Feather

The choice you get to make every day is what you will do today. Your pain will be there anyway, whether you sit and do nothing or whether you reach out and make a difference. You decide. It could make all the difference for you, and for many others. 

In the coming weeks I am going to begin a new blog, a new version of PAIN IS A FOUR LETTER WORD. It will be one for CRPS/RSD. Because so many people have responded positively to the information contained in tis blog when I discussed CRPS, I decided the need was there for one where I could pass along information, share new websites, updates from the website, answer questions sent in to us on the site, etc. 

I will put an announcement on the website in the WHAT'S NEW section about it so keep an eye out for it!

I want to thank Dr Spiegel of National Hyperbaric Oxygen Therapy for all his help in answering questions posed here by patients, and myself, in putting this blog together. I also want to thank Susan Rodrguez of Rapid Recovery Hyperbarics for her help along the way. 

I also want to thank everyone who wrote in, sending in their questions and comments along the way. They helped move the discussion along and provide some interesting questions and answers!

So in closing let me leave you with this thought from Pakenham Beatty;

"By your own soul, learn to live. If some men thwart you, take no heed. If some men hate you, have no care. Sing your song. Dream your dream. Hope your hope and pray your prayer."

Peace, Keith Orsini

American RSDHope

1 comment:

Catherine said...



I cannot agree with you more.
I have had RSD for 12 yrs and we have to come to terms with having this disease and make peace with it.
We have to move on with life and
accept the new way we have to live.
Yes we will live with pain each and every day, but like you said, we may as well get up and seize the day because that pain is going to be there anyway. Life is different now than it was pre-RSD, and we have to accept it and try and make the best of each and every day.
With RSD, we have to keep our bodies moving, we cannot lie idle, because this makes the RSD get worse. Does it hurt to move and get active, does it hurt to do PT & exercise, absolutely, but it helps improve your RSD and your body. This is why PT is one of the most important treatments for RSD.

Thanks for all the information that you share with us.
Thanks for taking the time to
blog everyday as you went through
your HBO treatments, to give people
an in-depth look at what it is really like.
You are a blessing to the RSD

hugs, Catherine