Keith Orsini, My Story
Dear Friends;
Original Injury - How it began - Picture it, 1974
I would like to share with you some information on how our Organization got started and why by telling you my story.
I must warn you ahead of time that even though I will try to be brief that when you are telling a forty year long journey it can take some time, so grab a nice cup of tea, sit back, and enjoy ;-)
I was officially diagnosed with RSD (now known as CRPS) in April of 1993. That was 8 years after the auto accident which broke my back, tore both rotator-cuffs, and covered me from head to toe with bruises, but that was 19 years after my medical ordeal started in 1974. Apparently the spinal injury was when the disease evolved into full body, or systemic CRPS, not unusual for CRPS patients.
Up until then my CRPS had been fairly well contained above my neck; face, eyes, ears, top of head, etc. It manifested itself in the typical CRPS ways though; constant burning pain 24/7, migraines, extreme sensitivity to touch, sound, vibration, temperature changes, and all of the other allodynia issues we all know so well. As well as in some unusual ways such as having some part in taking away the vision in my left eye, but compared to systemic CRPS, wow, it was a walk in the park ;-)
My symptoms had been going on and slowly increasing since my original injury in 1974. I was hit in the face with a baseball, crushing my cheekbones, breaking my nose, and resulting in the loss of the vision in my left eye. It was partly my own fault I guess. I was the pitcher and if I had thrown a curveball instead of trying to challenge the hitter with a fastball, well, maybe I would have struck him out instead of having him hit it straight back at my head. Actually most of the pitchers in the videos below probably would say the same thing because their pitch counts were mostly full! Coach wanted me back in the game, I wanted back in the game. I was winning, WE were winning, and my dad just wanted me to go to the hospital.
Funny thing was it didn't hurt that badly right away. Not until about 30 minutes later, then, yeah boy! It did bleed like a son of a gun for a long time. We couldn't get it to stop bleeding. They had towel after towel of blood. Sorry to be gruesome here but it was pretty gruesome and I will warn you now, don't watch the videos below if you are squeamish.
Let me show you a few videos of other pitchers in similar circumstances. These are guys who suffered the same injury I did, some ended up worse than I did, some better. How can that happen? How can it be that bad? It's just a little tiny ball right? In almost all of the videos, doesn't matter the age of the pitcher, 14, 17, 22, the pitcher gets hit when the ball is going about 100 mph. I was 14 years old at the time, playing with 16 and 17 year-olds so my ball was going about 100 mph too when it hit my face. Maybe I should have learned to throw knuckleballs? If you know baseball that makes sense.
Video 1 Pitcher gets hit in head by pitch
Video 2 Pitcher gets hit in head by pitch
Video 3 Pitcher gets hit in head by pitch
Video 4 (this last video talks about how they are working on new hats and helmets)
Pretty rough huh? Especially to the the guys getting hit. They are now developing special helmets for pitchers and even hats with extra padding so if they get hit in the head it won't result in brain damage, as you saw in the last video. I don't know if anyone else ever developed CRPS from this type of injury besides myself. If they have and read this, I would love to hear from them.
I still remember lying on my back on that skinny little bench holding a blood-soaked towel to my face and thinking, I wonder if that counts as a hit or an error because I had a no-hitter going and had three hits in the game. That seemed very important to me at the time and I still remember it. I also still remember my dad and the coach arguing back and forth about whether or not I should stay and try to go back in or go to the hospital. It got pretty heated.
Of course I ended up at the hospital where they re-set the nose, fixed my cheekbones, packed the nose with about three hundred yards of gauze and gave me a big beautiful nose cast. There is nothing like a big ole white nose cast on an already good-sized italian nose let me tell you. And they don't tell you what it is going to be like taking out the six miles of gauze when they take the cast off either! Yikes! Holy Moly! It felt like a magic trick gone horribly wrong. I kept waiting for some cheesy circus music to start and a rabbit to come out at the end of the gauze!
Doctors, Doctors, Doctors
Looking back, it does explain a lot of the physical issues and memory problems I had in high school as well as in college that either the Drs. never could figure out or I never even mentioned to them because it never occurred to me to do so. Symptoms like short-term memory problems, migraines, problems with sound, vibration, light sensitivity, loud and/or sudden noises, extreme pain with the onset of the change in seasons, and then I even started having difficulty with physical activities like running for any length of time which made football practice and other sports activities so much harder in high school than they were in junior high. I didn't understand why I couldn't keep up physically anymore like I did before. Now I understand that it was the beginning of the spread of the disease, fight/flight response, allodynia, and many of the basic symptoms of the disease.
And of course they did not actually diagnose with me with RSD back then, in 1974. Not yet. Back then they had no clue what RSD was. They had no idea what I was dealing with medically. My parents took me to pretty much every physician in the state of Massachusetts and then we crisscrossed the country visiting every hospital seeking an answer. We didn't find one but we did find some interesting Doctors with some not so interesting opinions of my "problem". See if you recognize any of them ;-)
Recognize these diagnoses?
Your son is on drugs. Your son wants more drugs. He is seeking attention because he is the fourth child. He is acting out. He is making it all up. The pain is all in his head. He is exaggerating his pain. A few even tried to say it was a couple of other diseases which they then researched and dismissed. And so forth. I remember a speaker we had at one of the first conferences we held back in 1995 I believe. His name was Dr Hooshang Hooshmand, or "Hoosh" as he asked us to call him once we became friends. He said "Of course the pain is all in your head, that is where you feel pain!" Gotta love the Hoosh! Anyone who knew Hoosh knew all of his little sayings like that.
College - 1982
We never found an answer though. That didn't stop me from graduating high school, playing sports all through high school, or attending and graduating from college. While the short-term memory problems did make college interesting, especially learning my lines in the dozen or so plays I was involved with, my illness not only didn't stop me from graduating in 1982 but I was also blessed with being able to be Technical Director at the University's Theatre for the last three years of my time there. Memories I will always cherish. I did not understand why I had so much difficulty remembering things, studying, learning new things, etc., especially compared to everyone else but I simply found ways around it. I learned ways around the pain as well. Most people I went to school with probably never knew I dealt with chronic pain that whole time, with no meds, no self-medicating, no drugs, hardly ever drank, etc.
Auto Accident 1985
So we jump to 1985 and following the auto accident, came some very interesting years. Suffice it to say I spent quite a few months restricted to bed due to the severity of my injuries. I had spinal surgery and rotator-cuff surgery in 1987. Following the surgeries I spent a total of 20+ months going through physical rehab and during that time I was on SSD for a short period while I recovered. Afterwards I went back to work. I thought I was good to go. Remember, still no CRPS diagnosis. I still had no clue what the underlying chronic pain condition was nor did I realize that what I had just gone through and/or the surgeries had actually made the disease worsen and spread.
Eureka! Diagnosis 1993
It was only in 1993, when they FINALLY made the actual diagnosis of RSD that they discovered I have actually had this disease since 1974, when I was 14. This was what I had had all along. The Doctor read me the diagnosis out of a book. She said that "it would burn itself out in a year". Since I had already had it for 19 years I was rather dubious of her assessment. Three months later I met with a pain management specialist who told me that we should buy not rent a wheelchair. I will never forget either of those conversations.
I ended up going on permanent disability that year but I finally had a name for my main pain issue, now to be added to the back problems that were developing. So, RSD? Great! I can find all about the disease, find a good Doctor, learn how to fix it, and then get on with my life. Right? Right? Hello?
In 1993 I moved to Maine shortly after I got that diagnosis and moved back home, back home to mom and dad ;-)
I needed their help and they were there for me. After discovering my Dr. could give me little more than a name for my condition, I turned elsewhere for information. Instead, I found a HUGE hole where information should have been. My family and I decided we could not be the only ones looking for information on this disease. We looked to see what we could find for information on the disease.
To read more on how our organization formed next, read the ABOUT US SECTION.
I was pretty much stuck in the bed for a year or two I guess. A lot of those first couple of years in Maine are blurry. Lots of pain and lots of medication, lots of physical therapy broken up by chatting via computer with new friends on that new fangled thing called the internet and the first CRPS website!
Original Injury - How it began - Picture it, 1974
I would like to share with you some information on how our Organization got started and why by telling you my story.
I must warn you ahead of time that even though I will try to be brief that when you are telling a forty year long journey it can take some time, so grab a nice cup of tea, sit back, and enjoy ;-)
I was officially diagnosed with RSD (now known as CRPS) in April of 1993. That was 8 years after the auto accident which broke my back, tore both rotator-cuffs, and covered me from head to toe with bruises, but that was 19 years after my medical ordeal started in 1974. Apparently the spinal injury was when the disease evolved into full body, or systemic CRPS, not unusual for CRPS patients.
Up until then my CRPS had been fairly well contained above my neck; face, eyes, ears, top of head, etc. It manifested itself in the typical CRPS ways though; constant burning pain 24/7, migraines, extreme sensitivity to touch, sound, vibration, temperature changes, and all of the other allodynia issues we all know so well. As well as in some unusual ways such as having some part in taking away the vision in my left eye, but compared to systemic CRPS, wow, it was a walk in the park ;-)
My symptoms had been going on and slowly increasing since my original injury in 1974. I was hit in the face with a baseball, crushing my cheekbones, breaking my nose, and resulting in the loss of the vision in my left eye. It was partly my own fault I guess. I was the pitcher and if I had thrown a curveball instead of trying to challenge the hitter with a fastball, well, maybe I would have struck him out instead of having him hit it straight back at my head. Actually most of the pitchers in the videos below probably would say the same thing because their pitch counts were mostly full! Coach wanted me back in the game, I wanted back in the game. I was winning, WE were winning, and my dad just wanted me to go to the hospital.
Funny thing was it didn't hurt that badly right away. Not until about 30 minutes later, then, yeah boy! It did bleed like a son of a gun for a long time. We couldn't get it to stop bleeding. They had towel after towel of blood. Sorry to be gruesome here but it was pretty gruesome and I will warn you now, don't watch the videos below if you are squeamish.
Let me show you a few videos of other pitchers in similar circumstances. These are guys who suffered the same injury I did, some ended up worse than I did, some better. How can that happen? How can it be that bad? It's just a little tiny ball right? In almost all of the videos, doesn't matter the age of the pitcher, 14, 17, 22, the pitcher gets hit when the ball is going about 100 mph. I was 14 years old at the time, playing with 16 and 17 year-olds so my ball was going about 100 mph too when it hit my face. Maybe I should have learned to throw knuckleballs? If you know baseball that makes sense.
Video 1 Pitcher gets hit in head by pitch
Video 2 Pitcher gets hit in head by pitch
Video 3 Pitcher gets hit in head by pitch
Video 4 (this last video talks about how they are working on new hats and helmets)
Pretty rough huh? Especially to the the guys getting hit. They are now developing special helmets for pitchers and even hats with extra padding so if they get hit in the head it won't result in brain damage, as you saw in the last video. I don't know if anyone else ever developed CRPS from this type of injury besides myself. If they have and read this, I would love to hear from them.
I still remember lying on my back on that skinny little bench holding a blood-soaked towel to my face and thinking, I wonder if that counts as a hit or an error because I had a no-hitter going and had three hits in the game. That seemed very important to me at the time and I still remember it. I also still remember my dad and the coach arguing back and forth about whether or not I should stay and try to go back in or go to the hospital. It got pretty heated.
Of course I ended up at the hospital where they re-set the nose, fixed my cheekbones, packed the nose with about three hundred yards of gauze and gave me a big beautiful nose cast. There is nothing like a big ole white nose cast on an already good-sized italian nose let me tell you. And they don't tell you what it is going to be like taking out the six miles of gauze when they take the cast off either! Yikes! Holy Moly! It felt like a magic trick gone horribly wrong. I kept waiting for some cheesy circus music to start and a rabbit to come out at the end of the gauze!
Doctors, Doctors, Doctors
Looking back, it does explain a lot of the physical issues and memory problems I had in high school as well as in college that either the Drs. never could figure out or I never even mentioned to them because it never occurred to me to do so. Symptoms like short-term memory problems, migraines, problems with sound, vibration, light sensitivity, loud and/or sudden noises, extreme pain with the onset of the change in seasons, and then I even started having difficulty with physical activities like running for any length of time which made football practice and other sports activities so much harder in high school than they were in junior high. I didn't understand why I couldn't keep up physically anymore like I did before. Now I understand that it was the beginning of the spread of the disease, fight/flight response, allodynia, and many of the basic symptoms of the disease.
And of course they did not actually diagnose with me with RSD back then, in 1974. Not yet. Back then they had no clue what RSD was. They had no idea what I was dealing with medically. My parents took me to pretty much every physician in the state of Massachusetts and then we crisscrossed the country visiting every hospital seeking an answer. We didn't find one but we did find some interesting Doctors with some not so interesting opinions of my "problem". See if you recognize any of them ;-)
Recognize these diagnoses?
Your son is on drugs. Your son wants more drugs. He is seeking attention because he is the fourth child. He is acting out. He is making it all up. The pain is all in his head. He is exaggerating his pain. A few even tried to say it was a couple of other diseases which they then researched and dismissed. And so forth. I remember a speaker we had at one of the first conferences we held back in 1995 I believe. His name was Dr Hooshang Hooshmand, or "Hoosh" as he asked us to call him once we became friends. He said "Of course the pain is all in your head, that is where you feel pain!" Gotta love the Hoosh! Anyone who knew Hoosh knew all of his little sayings like that.
College - 1982
We never found an answer though. That didn't stop me from graduating high school, playing sports all through high school, or attending and graduating from college. While the short-term memory problems did make college interesting, especially learning my lines in the dozen or so plays I was involved with, my illness not only didn't stop me from graduating in 1982 but I was also blessed with being able to be Technical Director at the University's Theatre for the last three years of my time there. Memories I will always cherish. I did not understand why I had so much difficulty remembering things, studying, learning new things, etc., especially compared to everyone else but I simply found ways around it. I learned ways around the pain as well. Most people I went to school with probably never knew I dealt with chronic pain that whole time, with no meds, no self-medicating, no drugs, hardly ever drank, etc.
Auto Accident 1985
So we jump to 1985 and following the auto accident, came some very interesting years. Suffice it to say I spent quite a few months restricted to bed due to the severity of my injuries. I had spinal surgery and rotator-cuff surgery in 1987. Following the surgeries I spent a total of 20+ months going through physical rehab and during that time I was on SSD for a short period while I recovered. Afterwards I went back to work. I thought I was good to go. Remember, still no CRPS diagnosis. I still had no clue what the underlying chronic pain condition was nor did I realize that what I had just gone through and/or the surgeries had actually made the disease worsen and spread.
Eureka! Diagnosis 1993
It was only in 1993, when they FINALLY made the actual diagnosis of RSD that they discovered I have actually had this disease since 1974, when I was 14. This was what I had had all along. The Doctor read me the diagnosis out of a book. She said that "it would burn itself out in a year". Since I had already had it for 19 years I was rather dubious of her assessment. Three months later I met with a pain management specialist who told me that we should buy not rent a wheelchair. I will never forget either of those conversations.
I ended up going on permanent disability that year but I finally had a name for my main pain issue, now to be added to the back problems that were developing. So, RSD? Great! I can find all about the disease, find a good Doctor, learn how to fix it, and then get on with my life. Right? Right? Hello?
In 1993 I moved to Maine shortly after I got that diagnosis and moved back home, back home to mom and dad ;-)
I needed their help and they were there for me. After discovering my Dr. could give me little more than a name for my condition, I turned elsewhere for information. Instead, I found a HUGE hole where information should have been. My family and I decided we could not be the only ones looking for information on this disease. We looked to see what we could find for information on the disease.
To read more on how our organization formed next, read the ABOUT US SECTION.
I was pretty much stuck in the bed for a year or two I guess. A lot of those first couple of years in Maine are blurry. Lots of pain and lots of medication, lots of physical therapy broken up by chatting via computer with new friends on that new fangled thing called the internet and the first CRPS website!
Out of the Wheelchair
I was in that wheelchair full-time until around the year 2000 or so I believe. The dates all run together after a while. Then I only needed it when I went somewhere that required a lot of walking. I graduated to a cane then. How did I get out of it? Very slowly and with a whole lot of hard work let me tell you. Plus, I am extremely stubborn. I started out by deciding I didn't want to stay in it and I was going to walk to the bathroom, five feet. I did it, once. Then twice, then ten times a day. Then I walked around the couch, once, twice, then ten times a day and so forth. I am sure it looked either comical or pathetic, not sure which one and didn't really care actually.
Someone once said something interesting to my Mom. This woman said, "Well Keith isn't in pain all the time is he?". My Mom quickly straightened her out I think, let me assure you. Like almost every single CRPS patient I know, the pain is ever present. Some days it might be a 7, some days a 9, and some days a 987. But most days it is a fairly steady 8. A chronic pain patient pain scale 8. Not the typical "normal" every day persons pain scale 8.
Many of you guys know what I mean. When you go into the Drs office and they ask you, "What is your pain today on a scale of 1-10?" You want to say 10 every time to make sure they understand the severity of your pain, how out of proportion it is to one of their "regular" patients who doesn't deal with chronic pain every day. I always felt that they should have two pain scales; one for regular, normal people (is there such an animal?), and one for chronic pain patients. Because my 8 is not John Q Public's 8. It isn't even close. The only use my pain scale number is to the Dr is if he looks at my number month after month at each appt. and tracks them on a chart to see whether they go up and down, like on a curve. But just as a number itself? Useless. But I digress.
And if my CRPS is doing fairly well then I always have my degenerative disc disease, failed back syndrome, Fibromyalgia, discs in my neck and back, migraines, insomnia, myofacial pain syndrome, or a host of other ailments I have been blessed with; as many other CRPS patients have ;-D You know who you are, c'mon, take a bow! It does seem to open the door to other disease/ailments, perhaps because it weakens the body/immune system.
Please don't get me wrong. I am NOT complaining. For while I do NOT believe in that awful statement that God doesn't give us more than we can handle, for my God doesn't hand out things like CRPS to those He loves; I do believe that He has plans for each and every one of us. I do believe His plan for me includes being in this place at this time doing this work. Do I wish he gave this work to someone else and I was healthy and could live a life without pain? Absolutely. I may be on medication but I am not an idiot. Problem is, I wouldn't wish this disease and pain on anyone else, not even my most hated enemy. I have it and I will work around it.
Florida - 2008
I ended up moving to Florida so I could get our of the cold weather. The cold was just making my pain worse. Those are some long winters up there and 10 degrees below zero is meant for penguins not people. But like Goldilocks ... Florida was too hot for me, Maine was too cold, and so we sought a third option; a state where we could actually do things outdoors during the daytime without freezing to death or sweating every drop of water out of our bodies. We found it in North Carolina.
We are now what people call half-backs, having moved halfway back towards where I originally started here in NC. Beautiful here; weather, people, church, politics (ok, so not everything is perfect). We just love it though.
So here I am, fighting every minute I can, resting when I can't. Does it cause me pain to sit and type sometimes? Absolutely. Most of the time. How about when I am walking? Yes. Almost all of the time I am walking it hurts and the longer I walk, the more I will hurt that night and the next morning. Standing? Yup. Floating in the air? If only I could figure out how to do that I would be in less pain and a very wealthy man!
So, why do I walk for exercise then? Why not just sit on the couch? Because if I stayed on the couch two days this week, it would be three the week after, then four the week after that, and pretty soon I would not be getting off the couch again and be right back needing the cane or worse, my old wheelchair. I don't want to go back there ever again if I can prevent it. One day I may not have a choice but while I still can prevent it, I will do everything in my power to prevent its' happening.
Does it hurt to simply sit in a chair? Absolutely. Does it hurt to volunteer to read scripture at my church? Yes. Would it hurt just as much if instead of doing that I sat at home and did nothing at all? Absolutely.
Sometimes during the week I volunteer with children; helping them to read, write, etc. does it hurt? Well, let me tell you. When you have full body CRPS you hurt 24 hours a day whether you do something or nothing. Understand that. EVERYONE needs to understand that; whomever you are reading this right now; fellow patients, family members, friends, reporters, physicians, nurses, whatever your background, whatever brought you here doesn't matter. You all need to understand really understand that no matter what we CRPS patients do we live in pain 24/7. Even my fellow patients need to think about this. If we are going to be in pain anyway, and there is something we can do to distract ourselves from that pain for ten minutes, 30 minutes, an hour, two hours, however long it is, try and do it!
Will you be in pain still? Even if you are distracted? Yes. Will you hurt more by doing something like volunteering at your church or sitting and chatting with a homeless person at your local shelter? Probably but maybe you will also feel a little positive energy as well AND you will be making a difference in the life of someone else. We, all of us, each of us, need to help our fellow man. We are all in this world together and if we don't step up and help each other who will?
I realize you are in pain and you cannot do what most healthy people can do. I am not asking you to go out and build someone a house. Nor am I asking you to do a normal job. I know how difficult it is for people with CRPS to do what other people consider normal. I personally understand the memory issues and how they can impact a workplace, how hard it is to do any job, even a volunteer one, for even an hour or two because your entire body throbs and aches. I also know what it is like to get a hug from a 6 year old that just read for the first time. Boy, is that wonderful and free medicine or what!?!? Helping kids learn to read is so much fun and it helps to remind me of all the healthy children out there. When you get emails every day from parents asking "Why does my ten year old child suffer from this horrific disease?" and you have no real answer but try to provide comfort anyway, you really need that weekly dose of healthy kid serum, seeing those smiling faces will do it.
Don't hold yourself out of getting involved in your community, involved with other people, because of this disease. It will have serious emotional consequences which will impact your pain even more.
The key words are moderation and adjustments. Many times I can't do anything because of the pain. That is when I make sure I rest. Sometimes I have to get by with just five minutes here and there. You get smarter the longer you deal with chronic pain. But that is why it is called a disabling disease. I am sure this is nothing new that I am describing here to most of you. You deal with the same things or worse yourselves.
Most people who know me would probably be very surprised, maybe even shocked to read this story. They have no clue that this is my story. Chronic Pain is also called the invisible disability. People can't always see your pain and sometimes they assume you are fine, not understanding the incredible fight it takes every minute of every day just to get by, like the duck who swims across the pond. He looks fine from above; skimming across the water effortlessly but what you don't see is all of the work going on just below the surface or know how much work it takes to get him from one side of the pond to the other because ducks only make noise when they take off and land (do they? works for the story anyway).
I remember how I struggled with my job learning even the simplest new task and even forgetting some of the older tasks I already knew when the stress increased my pain but since it was before I had a true and correct diagnosis and knew anything about what was then called RSD, I knew nothing about how it impacted the short-term memory. I didn't know what was going on at the time. Was I getting early-onset alzheimer's? It was a confusing and difficult time as I fell further and further behind at work, able to do less and less. I know many of you out there are shaking your head in agreement. But when you learn, when you discover it is all part of the disease, this weird collection of symptoms, it starts to make sense and you realize you aren't crazy, you aren't losing your mind or getting alzheimer's, or a brain tumor, or anything like that. It is all because you got hurt, had surgery, stubbed your toe, fell down, got shot, or whichever of the many, varied, and bizarre ways you can develop this crazy disease called CRPS.
I wish the SSA would more actively encourage volunteer programs. People get paranoid about doing anything but just because we are on SSD doesn't mean we have to hide in a corner someplace. Yes, we can't do many of the things we used to, the things that made us money, the physical things we used to, especially things for hours on end. We can't physically do them anymore because our bodies are not up to that. Many of us also struggle with some of the tasks that require learning new things due to the short-term memory problem that comes with our disease.
That doesn't mean it won't cause you a little extra pain but as any Doctor who deals with chronic pain patients will tell you, just getting out of bed in the morning is a decision that may increase your pain.
It is what you decide to do after that that determines your destiny.
So make good decisions. Decisions that can help focus your brain, make connections, use parts that you have been letting go dormant, talk to people a few times a week, smile, engage, M O V E your body a little. Sure it might hurt here and there but there is no guarantee that just sitting on your couch will bring you less pain right? Make a difference in someone else's life and you just might see a positive change in yours.
This is why Social Security Disability NEEDS to actively encourage people on Disability to be volunteers rather than make them afraid to do so, afraid that they will lose their benefits. Think about the change that could be made across the nation if the SSA and the education system could join hands! Put all of the amazing minds, those of us with Type A personalities but currently sidelined by disability, together with the local school system! Think of the teachers in your local schools suddenly getting an influx of one extra body in their class every day for a few hours, all of those students getting the benefit of the adult attention, help, assistance, caring, love, nurturing! There would be a sea change in our education system within a year! The students would be excited by it, the teacher retention rate would increase, graduation rates would increase, test scores would go up, parents (voters) would be happier, YOU would be more fulfilled and your brain synapses would work better! Just think of it! All because you volunteered a few hours a week to help a child to read or learn to add some numbers.
Treatments and Medications
Many people have asked me what treatments I have had over the years, which ones I have not, etc.
You can check out these links for the two major treatments I have had.
Low-dose Ketamine In-Hospital continuos infusion - I was the Sixth patient in the United States to have a ketamine infusion. If you click on the link you can read two of the articles I wrote about my experiences. I had it done twice. I was blessed to have it performed both times by the Doctor who is known as the "Father of Ketamine" in the United States, Dr Ronald Harbut. That was back in 2003, way back before ANY OTHER Doctor in the entire country was doing it. This type of infusion means that the ketamine is being dripped into your body continuously, non-stop, 24 hours a day for between 5 and 7 days. Non stopping and starting like some of the other forms of ketamine infusion.
Then, because Dr Harbut is one of the kindest, loving, most amazing Drs. you could ever meet who only cares about getting people in pain out of pain, he flew out to Philadelphia and instructed Dr Schwartzman and his entire staff how to perform ketamine infusions! He shared all of his research with him, taught the staff his techniques just so they could help other patients. He was NOT paid to share this information, didn't get a kickback for every patient Dr Schwartzman treated after that, etc., he just did it because he wanted other patients out of pain. Dr Harbut then went on and got the first Ketamine treatment portico,
HBOT - Here is one and HERE is Two
I have also had many lumbar nerve blocks, cervical blocks, epidural blocks, facet joint injections, etc. LOTS of physical therapy; aqua therapy (my favorite!!!), and I try and follow a good chronic pain diet, also known as the Four-F's Diet.
Currently the best pain medication for me has been the fentanyl patch. I was doing very well on it until the beginning of October of 2013 when the insurance company forced me to try the generic patches for one month; apparently to prove they either were as good as, or not, the name brand duragesic patch. What a test of endurance and a reminder of how scary halloween can truly be for my better half. I am sure that for some people the generic patches work just fine. For me they work about 50% as well. When your major source for pain management is suddenly only working half as well as it has been working and you have CRPS let me tell you, that is a loooooong month! Insomnia is difficult enough without a 50% increase in pain robbing even more sleep from you. What these insurance people don't understand is how long it takes to get your pain back under control after having it upset like that. One more speed bump in the highway that is CRPS. Fortunately I have been blessed with an amazing partner and she kept me sane during that trial. Despite her own burdens, she is always there for me.
I was able to get back on the name brand patches once the insurance insurance company was satisfied that the generic ones didn’t work, thank you Jesus. I am certainly not pain-free. I don’t know anyone with full-body or systemic CRPS who is, but I have been close a time or two. The problem is that as wonderful as some of those treatments are none of them last more than a a couple of years. At least not for me. With my patches my pain level averages an 8-9 on most days. I am used to that. Higher on day three of the patch, lowest on day two.
Most people also don't understand the precarious balancing act the typical chronic pain patient has to play with medications; too little and you can't function because of the pain, too much and you can't function because of the medication. Finding the right balance takes a time and having a little extra pain so you can function and "do things" can make the difference in enjoying life or not. There are a lot of physicians out there I think who still have a difficult time understanding that concept, especially when it comes to opiods; and even more so when it comes to the distinctions between dependence, tolerance, and addiction.
Present Day
We try and get out to walk for exercise every other day. Some days it is harder than other days to motivate myself because of the pain it causes. But I remember what it felt like when I was unable to walk and had to stay in bed for a couple of years, or when I had to use a wheelchair for a number of years after that. I am very grateful that I am able to walk and so I get out and do it. Very grateful believe me.
I remember all of the people who can no longer get out and walk, and so I do it for them as well, people like my sister Karen. I do whatever types of exercise I can do without overdoing it on the good days. A difficult task sometimes because I can be a little, just a little, stubborn but it's something you learn over time. I am also blessed because I have a partner who motivates me when I need it. She is there walking beside me every day.
People used to see Anj and I out walking and were surprised. Nowadays we try to swim (me) and exercise (her) at the gym, and anytime our bodies will allow we use our treadmill and/or exercise bike or go out for short walks. I have to be careful not to push but at the same time you can’t stay on the couch or your body will freeze up. Not only that, after only three days my back starts screaming at me to get off my you know what and WALK! it isn't an option for me, a pleasurable thing, stroll in the sunshine. It is part of my job, my full-time job of having CRPS, fibromyalgia, and failed back syndrome. When you have chronic diseases, chronic illness, it is a full time job managing the pain, symptoms, medications, Drs., etc. I probably said that already.
I help her, she helps me. Anj is one of the most amazing people I know. What an incredible addition to the family, she certainly fits into my family, our family, this family of fighters. Those of you who know Mom and Dad O know what I am talking about. So out we go every day that we can. On the days we think about not walking our bodies hurt more so we get our tired tushies out there.
How Does That Relate To You?
Don't let pain stop you from doing whatever it is you feel in your heart to do. Volunteer at an animal shelter, at your church, at a hospital, work with veterans, or read to kids. There are a myriad of opportunities to get off your fanny and get your body and brain volunteering a few hours here and there without spiking your pain too much. Be careful and don't overdo, be aware of your pain level
Discover what you like to do, figure out a way to STILL do it, even if it is only for a shorter amount of time now, and then get out and do it. You might be surprised by how much the positive psychological changes can impact your overall pain picture. Don't allow this disease to rob you and others of the gifts you still have to offer.
Take control of this disease, arm yourself, and most of all remember, you are not alone anymore and you can make a difference, pain or no pain, just pace yourself. A lot can be accomplished with 20 minutes here and 20 minutes there. Just because we are disabled doesn't mean we have to let ourselves disappear.
Granted, if it weren't for my incredible family and the wonderful volunteers across the USA who help raise Awareness and Funds, there wouldn't be an American RSDHope. We simply wouldn't be able to accomplish something like this on our own. But I would still be out there doing something. Not because I am superman, but because like so many of you, I am a Type-A personality and, despite the illness, I have to do something whether I hurt or not. Otherwise I would curl up and die. As an famous man once said, a rolling stone ... can give you a heck of a bruise.
Can You Make A Difference? One Person?
Why I am sharing this? Because I want you to know that you too can get out there and make a difference. There are many individuals out there running support groups, holding fund-raisers, and raising awareness despite their pain.
We still have a long way to go, even after all of these years. What is important to note here though, is that progress IS being made and people ARE being helped.
You are no longer alone out there in your struggle. As of June 2016 American RSDHope closed. It may reopen sometime in the future with someone else running the show but we are simply burned out, worn out. My family and I ran it for just over 20 years, in addition to all of the medical issues we were dealing with and in the end, we simply got ground down and needed a break. We will miss everyone but it is time for someone else to carry the torch 😺
Peace and freedom from pain, it is all we seek,
Keith Orsini
American RSDHope
If you would like to hear a radio interview Keith did about CRPS with some others from the RSDSA, CLICK HERE!
I was in that wheelchair full-time until around the year 2000 or so I believe. The dates all run together after a while. Then I only needed it when I went somewhere that required a lot of walking. I graduated to a cane then. How did I get out of it? Very slowly and with a whole lot of hard work let me tell you. Plus, I am extremely stubborn. I started out by deciding I didn't want to stay in it and I was going to walk to the bathroom, five feet. I did it, once. Then twice, then ten times a day. Then I walked around the couch, once, twice, then ten times a day and so forth. I am sure it looked either comical or pathetic, not sure which one and didn't really care actually.
Someone once said something interesting to my Mom. This woman said, "Well Keith isn't in pain all the time is he?". My Mom quickly straightened her out I think, let me assure you. Like almost every single CRPS patient I know, the pain is ever present. Some days it might be a 7, some days a 9, and some days a 987. But most days it is a fairly steady 8. A chronic pain patient pain scale 8. Not the typical "normal" every day persons pain scale 8.
Many of you guys know what I mean. When you go into the Drs office and they ask you, "What is your pain today on a scale of 1-10?" You want to say 10 every time to make sure they understand the severity of your pain, how out of proportion it is to one of their "regular" patients who doesn't deal with chronic pain every day. I always felt that they should have two pain scales; one for regular, normal people (is there such an animal?), and one for chronic pain patients. Because my 8 is not John Q Public's 8. It isn't even close. The only use my pain scale number is to the Dr is if he looks at my number month after month at each appt. and tracks them on a chart to see whether they go up and down, like on a curve. But just as a number itself? Useless. But I digress.
And if my CRPS is doing fairly well then I always have my degenerative disc disease, failed back syndrome, Fibromyalgia, discs in my neck and back, migraines, insomnia, myofacial pain syndrome, or a host of other ailments I have been blessed with; as many other CRPS patients have ;-D You know who you are, c'mon, take a bow! It does seem to open the door to other disease/ailments, perhaps because it weakens the body/immune system.
Please don't get me wrong. I am NOT complaining. For while I do NOT believe in that awful statement that God doesn't give us more than we can handle, for my God doesn't hand out things like CRPS to those He loves; I do believe that He has plans for each and every one of us. I do believe His plan for me includes being in this place at this time doing this work. Do I wish he gave this work to someone else and I was healthy and could live a life without pain? Absolutely. I may be on medication but I am not an idiot. Problem is, I wouldn't wish this disease and pain on anyone else, not even my most hated enemy. I have it and I will work around it.
Florida - 2008
I ended up moving to Florida so I could get our of the cold weather. The cold was just making my pain worse. Those are some long winters up there and 10 degrees below zero is meant for penguins not people. But like Goldilocks ... Florida was too hot for me, Maine was too cold, and so we sought a third option; a state where we could actually do things outdoors during the daytime without freezing to death or sweating every drop of water out of our bodies. We found it in North Carolina.
We are now what people call half-backs, having moved halfway back towards where I originally started here in NC. Beautiful here; weather, people, church, politics (ok, so not everything is perfect). We just love it though.
So here I am, fighting every minute I can, resting when I can't. Does it cause me pain to sit and type sometimes? Absolutely. Most of the time. How about when I am walking? Yes. Almost all of the time I am walking it hurts and the longer I walk, the more I will hurt that night and the next morning. Standing? Yup. Floating in the air? If only I could figure out how to do that I would be in less pain and a very wealthy man!
So, why do I walk for exercise then? Why not just sit on the couch? Because if I stayed on the couch two days this week, it would be three the week after, then four the week after that, and pretty soon I would not be getting off the couch again and be right back needing the cane or worse, my old wheelchair. I don't want to go back there ever again if I can prevent it. One day I may not have a choice but while I still can prevent it, I will do everything in my power to prevent its' happening.
Does it hurt to simply sit in a chair? Absolutely. Does it hurt to volunteer to read scripture at my church? Yes. Would it hurt just as much if instead of doing that I sat at home and did nothing at all? Absolutely.
Sometimes during the week I volunteer with children; helping them to read, write, etc. does it hurt? Well, let me tell you. When you have full body CRPS you hurt 24 hours a day whether you do something or nothing. Understand that. EVERYONE needs to understand that; whomever you are reading this right now; fellow patients, family members, friends, reporters, physicians, nurses, whatever your background, whatever brought you here doesn't matter. You all need to understand really understand that no matter what we CRPS patients do we live in pain 24/7. Even my fellow patients need to think about this. If we are going to be in pain anyway, and there is something we can do to distract ourselves from that pain for ten minutes, 30 minutes, an hour, two hours, however long it is, try and do it!
Will you be in pain still? Even if you are distracted? Yes. Will you hurt more by doing something like volunteering at your church or sitting and chatting with a homeless person at your local shelter? Probably but maybe you will also feel a little positive energy as well AND you will be making a difference in the life of someone else. We, all of us, each of us, need to help our fellow man. We are all in this world together and if we don't step up and help each other who will?
I realize you are in pain and you cannot do what most healthy people can do. I am not asking you to go out and build someone a house. Nor am I asking you to do a normal job. I know how difficult it is for people with CRPS to do what other people consider normal. I personally understand the memory issues and how they can impact a workplace, how hard it is to do any job, even a volunteer one, for even an hour or two because your entire body throbs and aches. I also know what it is like to get a hug from a 6 year old that just read for the first time. Boy, is that wonderful and free medicine or what!?!? Helping kids learn to read is so much fun and it helps to remind me of all the healthy children out there. When you get emails every day from parents asking "Why does my ten year old child suffer from this horrific disease?" and you have no real answer but try to provide comfort anyway, you really need that weekly dose of healthy kid serum, seeing those smiling faces will do it.
Don't hold yourself out of getting involved in your community, involved with other people, because of this disease. It will have serious emotional consequences which will impact your pain even more.
The key words are moderation and adjustments. Many times I can't do anything because of the pain. That is when I make sure I rest. Sometimes I have to get by with just five minutes here and there. You get smarter the longer you deal with chronic pain. But that is why it is called a disabling disease. I am sure this is nothing new that I am describing here to most of you. You deal with the same things or worse yourselves.
Most people who know me would probably be very surprised, maybe even shocked to read this story. They have no clue that this is my story. Chronic Pain is also called the invisible disability. People can't always see your pain and sometimes they assume you are fine, not understanding the incredible fight it takes every minute of every day just to get by, like the duck who swims across the pond. He looks fine from above; skimming across the water effortlessly but what you don't see is all of the work going on just below the surface or know how much work it takes to get him from one side of the pond to the other because ducks only make noise when they take off and land (do they? works for the story anyway).
I remember how I struggled with my job learning even the simplest new task and even forgetting some of the older tasks I already knew when the stress increased my pain but since it was before I had a true and correct diagnosis and knew anything about what was then called RSD, I knew nothing about how it impacted the short-term memory. I didn't know what was going on at the time. Was I getting early-onset alzheimer's? It was a confusing and difficult time as I fell further and further behind at work, able to do less and less. I know many of you out there are shaking your head in agreement. But when you learn, when you discover it is all part of the disease, this weird collection of symptoms, it starts to make sense and you realize you aren't crazy, you aren't losing your mind or getting alzheimer's, or a brain tumor, or anything like that. It is all because you got hurt, had surgery, stubbed your toe, fell down, got shot, or whichever of the many, varied, and bizarre ways you can develop this crazy disease called CRPS.
I wish the SSA would more actively encourage volunteer programs. People get paranoid about doing anything but just because we are on SSD doesn't mean we have to hide in a corner someplace. Yes, we can't do many of the things we used to, the things that made us money, the physical things we used to, especially things for hours on end. We can't physically do them anymore because our bodies are not up to that. Many of us also struggle with some of the tasks that require learning new things due to the short-term memory problem that comes with our disease.
That doesn't mean it won't cause you a little extra pain but as any Doctor who deals with chronic pain patients will tell you, just getting out of bed in the morning is a decision that may increase your pain.
It is what you decide to do after that that determines your destiny.
So make good decisions. Decisions that can help focus your brain, make connections, use parts that you have been letting go dormant, talk to people a few times a week, smile, engage, M O V E your body a little. Sure it might hurt here and there but there is no guarantee that just sitting on your couch will bring you less pain right? Make a difference in someone else's life and you just might see a positive change in yours.
This is why Social Security Disability NEEDS to actively encourage people on Disability to be volunteers rather than make them afraid to do so, afraid that they will lose their benefits. Think about the change that could be made across the nation if the SSA and the education system could join hands! Put all of the amazing minds, those of us with Type A personalities but currently sidelined by disability, together with the local school system! Think of the teachers in your local schools suddenly getting an influx of one extra body in their class every day for a few hours, all of those students getting the benefit of the adult attention, help, assistance, caring, love, nurturing! There would be a sea change in our education system within a year! The students would be excited by it, the teacher retention rate would increase, graduation rates would increase, test scores would go up, parents (voters) would be happier, YOU would be more fulfilled and your brain synapses would work better! Just think of it! All because you volunteered a few hours a week to help a child to read or learn to add some numbers.
Treatments and Medications
Many people have asked me what treatments I have had over the years, which ones I have not, etc.
You can check out these links for the two major treatments I have had.
Low-dose Ketamine In-Hospital continuos infusion - I was the Sixth patient in the United States to have a ketamine infusion. If you click on the link you can read two of the articles I wrote about my experiences. I had it done twice. I was blessed to have it performed both times by the Doctor who is known as the "Father of Ketamine" in the United States, Dr Ronald Harbut. That was back in 2003, way back before ANY OTHER Doctor in the entire country was doing it. This type of infusion means that the ketamine is being dripped into your body continuously, non-stop, 24 hours a day for between 5 and 7 days. Non stopping and starting like some of the other forms of ketamine infusion.
Then, because Dr Harbut is one of the kindest, loving, most amazing Drs. you could ever meet who only cares about getting people in pain out of pain, he flew out to Philadelphia and instructed Dr Schwartzman and his entire staff how to perform ketamine infusions! He shared all of his research with him, taught the staff his techniques just so they could help other patients. He was NOT paid to share this information, didn't get a kickback for every patient Dr Schwartzman treated after that, etc., he just did it because he wanted other patients out of pain. Dr Harbut then went on and got the first Ketamine treatment portico,
HBOT - Here is one and HERE is Two
I have also had many lumbar nerve blocks, cervical blocks, epidural blocks, facet joint injections, etc. LOTS of physical therapy; aqua therapy (my favorite!!!), and I try and follow a good chronic pain diet, also known as the Four-F's Diet.
Currently the best pain medication for me has been the fentanyl patch. I was doing very well on it until the beginning of October of 2013 when the insurance company forced me to try the generic patches for one month; apparently to prove they either were as good as, or not, the name brand duragesic patch. What a test of endurance and a reminder of how scary halloween can truly be for my better half. I am sure that for some people the generic patches work just fine. For me they work about 50% as well. When your major source for pain management is suddenly only working half as well as it has been working and you have CRPS let me tell you, that is a loooooong month! Insomnia is difficult enough without a 50% increase in pain robbing even more sleep from you. What these insurance people don't understand is how long it takes to get your pain back under control after having it upset like that. One more speed bump in the highway that is CRPS. Fortunately I have been blessed with an amazing partner and she kept me sane during that trial. Despite her own burdens, she is always there for me.
I was able to get back on the name brand patches once the insurance insurance company was satisfied that the generic ones didn’t work, thank you Jesus. I am certainly not pain-free. I don’t know anyone with full-body or systemic CRPS who is, but I have been close a time or two. The problem is that as wonderful as some of those treatments are none of them last more than a a couple of years. At least not for me. With my patches my pain level averages an 8-9 on most days. I am used to that. Higher on day three of the patch, lowest on day two.
Most people also don't understand the precarious balancing act the typical chronic pain patient has to play with medications; too little and you can't function because of the pain, too much and you can't function because of the medication. Finding the right balance takes a time and having a little extra pain so you can function and "do things" can make the difference in enjoying life or not. There are a lot of physicians out there I think who still have a difficult time understanding that concept, especially when it comes to opiods; and even more so when it comes to the distinctions between dependence, tolerance, and addiction.
Present Day
We try and get out to walk for exercise every other day. Some days it is harder than other days to motivate myself because of the pain it causes. But I remember what it felt like when I was unable to walk and had to stay in bed for a couple of years, or when I had to use a wheelchair for a number of years after that. I am very grateful that I am able to walk and so I get out and do it. Very grateful believe me.
I remember all of the people who can no longer get out and walk, and so I do it for them as well, people like my sister Karen. I do whatever types of exercise I can do without overdoing it on the good days. A difficult task sometimes because I can be a little, just a little, stubborn but it's something you learn over time. I am also blessed because I have a partner who motivates me when I need it. She is there walking beside me every day.
People used to see Anj and I out walking and were surprised. Nowadays we try to swim (me) and exercise (her) at the gym, and anytime our bodies will allow we use our treadmill and/or exercise bike or go out for short walks. I have to be careful not to push but at the same time you can’t stay on the couch or your body will freeze up. Not only that, after only three days my back starts screaming at me to get off my you know what and WALK! it isn't an option for me, a pleasurable thing, stroll in the sunshine. It is part of my job, my full-time job of having CRPS, fibromyalgia, and failed back syndrome. When you have chronic diseases, chronic illness, it is a full time job managing the pain, symptoms, medications, Drs., etc. I probably said that already.
I help her, she helps me. Anj is one of the most amazing people I know. What an incredible addition to the family, she certainly fits into my family, our family, this family of fighters. Those of you who know Mom and Dad O know what I am talking about. So out we go every day that we can. On the days we think about not walking our bodies hurt more so we get our tired tushies out there.
How Does That Relate To You?
Don't let pain stop you from doing whatever it is you feel in your heart to do. Volunteer at an animal shelter, at your church, at a hospital, work with veterans, or read to kids. There are a myriad of opportunities to get off your fanny and get your body and brain volunteering a few hours here and there without spiking your pain too much. Be careful and don't overdo, be aware of your pain level
Discover what you like to do, figure out a way to STILL do it, even if it is only for a shorter amount of time now, and then get out and do it. You might be surprised by how much the positive psychological changes can impact your overall pain picture. Don't allow this disease to rob you and others of the gifts you still have to offer.
Take control of this disease, arm yourself, and most of all remember, you are not alone anymore and you can make a difference, pain or no pain, just pace yourself. A lot can be accomplished with 20 minutes here and 20 minutes there. Just because we are disabled doesn't mean we have to let ourselves disappear.
Granted, if it weren't for my incredible family and the wonderful volunteers across the USA who help raise Awareness and Funds, there wouldn't be an American RSDHope. We simply wouldn't be able to accomplish something like this on our own. But I would still be out there doing something. Not because I am superman, but because like so many of you, I am a Type-A personality and, despite the illness, I have to do something whether I hurt or not. Otherwise I would curl up and die. As an famous man once said, a rolling stone ... can give you a heck of a bruise.
Can You Make A Difference? One Person?
Why I am sharing this? Because I want you to know that you too can get out there and make a difference. There are many individuals out there running support groups, holding fund-raisers, and raising awareness despite their pain.
We still have a long way to go, even after all of these years. What is important to note here though, is that progress IS being made and people ARE being helped.
You are no longer alone out there in your struggle. As of June 2016 American RSDHope closed. It may reopen sometime in the future with someone else running the show but we are simply burned out, worn out. My family and I ran it for just over 20 years, in addition to all of the medical issues we were dealing with and in the end, we simply got ground down and needed a break. We will miss everyone but it is time for someone else to carry the torch 😺
Peace and freedom from pain, it is all we seek,
Keith Orsini
American RSDHope
If you would like to hear a radio interview Keith did about CRPS with some others from the RSDSA, CLICK HERE!
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