Cool!

I've been featured on "How to Cope With Pain's" April Pain Blog Carnival!

It's a fabulous blog with loads of information for everyone. Enjoy!

http://www.howtocopewithpain.org/blog/231/pain-blog-carnival-april/

Thank You

Thank you for all the encouraging and flattering comments. It's always amazing to me that I inspire others because of how much I still struggle myself. Regardless, I am so very very glad I can help!

All my love,
Maria

So Much For Ketamine

I was in a HORRIBLE amount of pain yesterday (a bit better today). Both legs burned/burn from my hips down to my toes....every single inch. I think I overstretched yesterday meaning I crossed that line from helpful to hurtful, as it is so easy to do with many activities when you have RSD. I can become overzealous when I am in a great mood. Oooops. Also, the weather changed so abruptly yesterday from crumby to the most beautifuly blue sky you have ever seen. That plays a role, too.



My mood hit a low last night because of the pain, and all of my anxieties came to a head. I started worrying about graduate school, and "what if-ing" my future away. I immediately went to my dad when I realized my fears were eating up my thoughts. He sat on the floor with me while I cried and made EVERYTHING okay again, promising he and my mom will help me always. My love for them is limitless... it's hard to express in a blog entry.

Mostly, my mood is still wonderful. It comes from being alive and out of the hospital (of course!), my support system, and from my time with Olivia recently, the beautiful, strong young woman I have become friends with who also suffers from RSD. Somehow, we are best friends already. It's as if I have known her my entire life because there is an unsaid understanding between us that I believe can only be present between two people who suffer from the same plight.



Being with Olivia helps me treat myself better and manage my disease more successfully (and with more logic and rational). I often overdo it when I am alone because I am a young, vibrant woman who wants to enjoy her life, but when Olivia is with me, I am more cautious. I want to make sure she is feeling well, so I become more aware of how I am feeling.


NOTE: I don't want to discourage anyone from receiving ketamine treatment. It can be sooooo helpful for many RSDers, but I believe since the disease is so fickle, the treatments can be too. This was just my experience. I wish it worked for me, but it wasn't the avenue for me to go to gain remission. We must figure out what is causing my "angry nerve" response, since it was not truly determined at HSS. There was last minute confusion, and nothing has been done to address that issue just yet. I see my surgeon Friday (aka McDreamy!). Good luck to anyone who tries ketamine! It could be wonderful! HSS is still offering the treatment for those who are considering.

Still in pain...

...but still happy :-)

Life is good (minus RSD)!

I'm Baaaaaack!

Excuse my writing for a few days. My head is still loopy because of the ketamine and two other meds I have to take while the ketamine leaves my system.

Geeze, I bounce back fast!

I felt more and more like myself as yesterday progressed. I even took some vicodin and went clothes shopping with my parents (one of my FAVORITE hobbies). I had the energy to wrestle my pup and chase him around the couch once or twice, I smiled and laughed as I made funny jokes about my hospital stay (lots of sarcasm involved)... Life is great again (as if it ever lost it's fabulousness!).

It was Murphy's Law in that ICU. I can't even explain to you what it feels like to fall asleep fine and wake up to people running in and out of the room yelling things, holding you down, injecting you with meds, not telling you anything, and your mom's terrified face looking down at you. I wanted to speak, but I just couldn't. All I could so was look with terrified eyes, because I think I was in shock. I finally got the courage to say, "Where am I/What happened," and my mom informed me that I was in the hospital and something happened with my heart. I then asked, "Am I going to die," and all the reinforcement of my living out the treatment could not convince me that I wouldn't die in that hospital. I begged my parents not to let me die and not to leave my side or let go of me, so they sat by my bedside and held my hand for 5 days.

After that incident, I was afraid to go back to sleep because going back to sleep meant waking up with my heart issue, which meant me thinking I could die. Exhausted, I stayed up as long as I could until I dozed off a long time later and woke up in the same state of panic and shock. It happened three times, and I was put on heart medication to mediate the effects of the ketamine on my poor little ticker.

They couldn't get me up to the therapeutic state of ketamine (a 20 on a scale of 1-20) where you are zonked out and sleep all the time. I was only able to go up to a 15, and that meant I was aware of every effect the ketamine was having on me. I couldn't see at all (blurry double vision), I was hallucinating, vomiting... I just wanted to go home. I wanted it all to end by Tuesday, and I couldn't leave until Friday.

Then, my kidneys became dysfunctional, and that's when keeping me on the ketamine became too much for the medical team to attempt safely. It is also when they spilled the beans that this happened during the last few treatments, and the only rational explain at the time is defective ketamine. They started lowering my dose to try to get my kidneys functioning properly again, but it wasn't happening. That is when I used my patient autonomy and asked to be taken off of the ketamine immediately. They complied.

When the ketamine was shut down, it was as if a 10 ton brick was lifted off of me and I could breathe again. My vision came back, the nausea ceased, my fears disapated, and I slept well that night for the first time in days (besides for the nurse waking me up every hour to take blood or give me meds several times during the night... my poor veins). When I woke up, I was discharged, did a happy dance (more like a wiggle because I was so weak and medicated) and slowly began refueling my body (I hadn't eaten in days).

I'm no longer hooked up to an IV in each arm, a cathater in my back, electrodes on my chest connected to a heart monitor, a blood pressure cuff to take my blood pressure every hour for 5 days, and oxygen up my nose.... I felt like a prisoner, but now I'm alive and I am free.

"Any existence deprived of freedom is a kind of death."

Good Thing I'm A Fighter

I have not updated since I have been home Friday, and I apologize for that. I was in a nightmare for five days with a bad ending, and I'm just not ready to go into details. I spent the week in ICU connected to every IV and monitor available, waking up from "naps" (because I barely slept or ate for five days) with doctors and nurses standing over me and shooting medicine into my arms. I thought I was dying. Apparently my heart was not taking to the ketamine well. This happened several times to my heart and each time, I swore I was going to die in that hospital. Then, my kidney function was bad (they were on overdrive), so bad that we had to stop the treatment early (well, I as the patient made them stop the treatment a few hours before they were planning to). I couldn't be in that torturous state any longer for no reason.

Apparently, this happened to the last four patients, meaning the batch of ketamine was likely defective... not me. Why they decided to not tell us that before we signed the consent form is beyond me.

I'm sorry to hide the story and details, but it was a bit too traumitzing for me to share over and over again. I need to regain my strength and fight.... because clearly there is little to no relief of my pain.

My parents NEVER left my side. My mom didn't change clothes or shower for 5 days because she didn't want to leave me (and I didn't want her too because I was so scared I would die). My father slept so he could be the voice of sanity for us. I always knew how amazing my parents were, but this event brought their amazing-ness to a whole new level. I've never had so much love and admiration for anyone in my life as I do for my mom and dad. They saved me last week.

Hospital

My family and I are headed up to the city this afternoon to get settled in for my inpatient stay tomorrow. They are staying at the hotel that is connected to the hospital, and we thought staying there tonight would be easiest for me.

Tomorrow, at 10:30AM, I will be poked, prodded, and shot up for my week in the hospital.

Here's hoping...

Undeserved Respect

Since the pope is in town and since he interrupted my coveted morning dose of Regis and Kelly, I'm going to raise a question or two about religion.

Upon the pope's long awaited arrival to the United States, I am appropriately reading Richard Dawkin's candid text, The God Delusion (go figure), and doing what I do best with a religious studies minor from the University of Miami, contemplating the psychology and pathology behind religion :-)

Dawkin's opens with the question, "Why is religion so sacred," and unapologetically states that he will approach religion the same exact way he approaches politics, fashion, weekend plans, or any other topic of conversation. A widespread assumption is that religion should be protected by an impenetrable wall of respect, and it's respect should be put in a different class from the respect we choose to give all other topics. "Religion...has certain ideas at the heart of it which we call sacred or holy or whatever. What it means is, 'Here is an idea or notion that you're not allowed to say anything about; you're just not. Why not? -- because you're not!'" Frankly, I side with Dawkins when I say the respect religion is given is undeserved respect, but you will have to read more of his text to find out why. Whether one believes in a god or not, it is in one's best interest to be exposed to both sides of the coin, which is why I embarked on religious studies of my own to make an informed decision.

I could go on for ages explaining the improbablity behind a supernatural power governing all things based on concrete historical evidence debunking biblical text straight through my man Charles Darwin and his evidence for the theory of evolution, but I won't. I just wanted to raise the question that Dawkins raises at the start of his book; Why is religion so sacred? I will say to each his own (as I say in regards to all things) and will leave you with a quote from Richard Dawkins decribing the "God" from the bible that many choose to worship:

"The God of the Old Testament is most arguably the most unpleasant character in all fiction: jealous and proud of it; a petty, unjust, unforgiving control-freak; a vindictive, bloodthirsty ethnic cleanser; a misogynistic, homophobic, racist, infanticidal, genocidal, filicidal, pestilential, megalomaniacal, sado-masochistic, capriciously malevolent bully."

I enter the hospital Monday, and I won't be praying to any god to help me through it. All that I have achieved and will achieve will be based on my own hard work, the professionals assisting me, and on the support from those I love. Amen.

:-)

I have been accepted to my top choice graduate school program!!!!! Yipeee!!!!!

Minus RSD

"The IV and your hospital bed
This was no accident
This was a therapeutic chain of events..."

Minus RSD, my life is perfect. It has been said that "there is no such thing as perfect," so if perfection is relative to the person experiencing it and not fixed, than I can say my life is perfect. I have an amazing support system (friends, family, and professionals included), I am beyond healthy in every way minus RSD (especially mentally thanks to therapy...everyone should go), I finally have a puppy (yipee!), I am entering graduate school in the fall to pursue my passion for helping others who are suffering, etc... I have A LOT going for me. A LOT. In fact, anything I have ever desired before is mine at this moment (again, minus RSD and my limitations).





It feels great to say that I am tremendously overjoyed by all that surrounds me and that is within me. Now, let's get rid of this nasty disease, so I can change the world with more mobility!

One Week

"This is the book I never read
These are the words I never said
This is the path I'll never tread
These are the dreams I'll dream instead
This is the joy that's seldom spread
These are the tears...
The tears we shed
This is the fear
This is the dread
These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel
Do you know how I feel?
'Cause I don't think you know how I feel
I don't think you know what I feel
You don't know what I feel"


A week from right now, I will be hooked up to monitors, IV's, etc... (you name it) positive thinking my way into remission, but at this moment, I am willing away pain from my buttocks down, wishing I didn't take my dog for an 8 minute walk (yes, 8 minutes).





For the most part, my sad thoughts are fleeting, and they usually come after a failed attempt at normalcy. Today's dog walk attempt is a prime example. Now, I think I get a little worse every day that passes, but in the past, I had weeks where my disease would level out. I hear the progression is cyclical, just as the pain can be, which adds to the elusive nature of RSD.





I took Shorter to my favorite state park today, conveniently located across the street from my house in New Jersey. I used to run to it's entrance and continue my run inside for miles and miles, never tiring of the treacherous footing and beautiful scenes. Feeling one with nature and my body always had a therapeutic effect on me, but now my body has become it's own entity seperate from my mind and nature. It is now the enemy... the one working against me and slowly attempting to drag my mind down with it.





On a day like today, I marvel at the beauty of nature; trees, bugs, cool breeze, baby blue sky so clear it is almost transparent. Lucid memories flood my mind of galloping in the wood, when the park used to seem too tiny compared to the miles I wished to complete. Now, it is a HUGE, daunting trap. I have a reoccuring dream where I am lost somewhere but in too much pain to find my way out on foot, and the once stunted trails now have become one of my largest and worst nightmares.





It hit me today on "operation dog walk"... If my treatment does not work, I will be forced to use a wheelchair when I choose to leave my house or take so much pain medicine that I am rendered useless. It is that bad right now, and the progression clearly has no intention of stopping.

This is it.

More Talent

Another poem about RSD by Olivia Wolf:


Healing rains absent,
the drought continues;
desiccated veinsroll nerves in cacti
while missives written
for spirits missing
toss in winds
too cold.

Tears pulled
from eyes scarred
fall red and dark upon
a flower now shriveled,
entwined in a hand
that refuses to let go
of a beauty long retired.

As sands swirl upward,
the thirsty body
ducks in protectionf
rom a desert determined
to stonewall connection;
tortured, heat sucks
at innocence until
petals melt atop
a skeleton’s remains.

Talent

A beautiful poem about RSD written by my new friend, Olivia Wolf.


Nerves struck, lit
smoke out hope,
vanquish calm,
confuse youth.

Burnt energy pulses dead,
toxic changing color;
an electrified landscape.

Don't Be Jealous

Power In Numbers

The three most basic types of social support are emotional support, which fosters feelings of comfort, love, compassion, empathy, etc...; cognitive support, which includes providing information, knowledge, and advice; and material support, which can be monetary or other but usually involves the exchange of money or goods. This support usually comes from those closest to the sufferer, such as family and/or friends, and can be termed "informal" support. We are going to focus on "formal" support, or support that is given through "support groups" and others who sufferer from chronic illness.

A central theme in formal support groups is empowerment, which refers to providing chronically ill people and their caregivers with the maximum amount of control over their own lives. Achieving feelings of mastery is extremely important to those with chronic illnesses, because the loss of control and independence that often comes with such diseases can be extremely damaging mentally, emotionally, and physically.

Support groups can lower stress, improve quality of life, and provide a place of refuge filled with understanding others ready to give the greatest quality of mental and emotional support that only a fellow sufferer can provide. Unfortunately, with chronic illness comes a sense of loneliness. Those diagnosed often feel as if they are a burden to the "normals" around them and can also feel like outcasts in a world they once felt a part of, assuming they are alone in their battle. These groups provide a safe environment and can mitigate some impacts of chronic illness.

For the last week, I have been following important protocol in order to receive my ketamine infusion, which is still an experimental treatment here in the United States. My psychiatric evaluation ended with a, "You are a lovely young lady. You should do very well with ketamine," and my cardiologist sent me on my way with a smile and a, "You have a perfect heart." One general medicine appointment and I will be pumped with ketamine in 9 days :-)

After my cardiology exam on Wednesday, I planned to meet up with another young woman of 23 years who is a patient of Dr. Richman's and lives in the city. She also has RSD amongst other autoimmune dysfunctions, and let me tell you this, she is a ray of sunshine and an absolute joy to be around. Not only do we have the commonality and physical bond of the same chronic illness, but the way we view the world and our suffering strongly connects us emotionally and mentally. We both continue to enjoy our lives to the best of our abilities while advocating for ourselves and other RSDers in the search for remission. An unexplainable and unsaid feeling of comfort is present in our conversations. We are able to speak to oneanother about our pain just as you would have a conversation about politics, literature, or what you did this weekend.

I think we have both found a place to call home and a friendship that will outlast our suffering.

Injustice

Here is a topic I just posted on an RSD support website. I am infuriated. THIS DISEASE IS NOT A JOKE. The longer one waits to get care, the more his/her disease will progress. For those of you who believe in things like heaven and hell... the pain can be equated to burning in the fires of hell. Now, imagine that pain all over your body. Not only is this disease painful, it is crippling... and it is PROGRESSIVE.


"I've never had to deal with anyone denying my disorder, especially in a way that has prevented me from getting medical care. I've been really lucky. Most doctors knew something was wrong but diagnosed me with benign conditions because they didn't know any better (for the most part). In my personal life, people don't understand how bad it really is, but they know something is gravely wrong. I just read and replied to a post in "rant and rave" where a young woman is being denied medical care in a hospital. I love how most medical professionals never ever mention mental health care, stress management, coping skills, etc... when you actually need them, but are so quick to diagnose you with factitious disorder, malingering, munchausen's, etc... I am a psych and soc girl (in fact, I will be a therapist in 2 years time), and the difference between mental disorders and REAL PAIN are painfully obvious. For such brilliant people, these displays are pathetic.

I am saddened by the lack of empathy, compassion, social skills, and knowledge that those who are supposed to HELP us possess. These are supposed to be some of the most brilliant minds in the country...

You can bet I will be doing something about this in my lifetime. I will make waves...

P.S. Dr. Richman at HSS in NYC is the exact opposite. He is absolutely amazing for anyone who cannot seem to find a doctor who will take their pain seriously."

The Last Lecture

Randy Pausch's Home Page:

http://download.srv.cs.cmu.edu/~pausch/

--"If I don't seem as depressed or morose as I should be, sorry to disappoint you."

--"I'm in phenomenally good health right now...I am in really good shape. In fact, I'm in better shape than most of you."

Two quotes from Mr. Randy Pausch that I can certainly relate to :-)

In my opinion, Mr. Pausch is one of the best examples of invisible illness and what it entails for the individual who decide's to live his/her life to it's fullest despite the circumstances. Looking at this man, from his physical appearance, abilities, and mannerisms, you would have a difficult time detecting the hand he has been dealt. In fact, I bet you would never, ever know that he has been given roughly 3-6 months of good health left. His sense of humor, compassion, zest for life, childhood wonder, strength, etc... are astounding, inspirational, and above all, beautiful.

Mr. Pausch is doing what a lot of us with chronic illness try to do but often get judged for by friends, family, medical professionals, and strangers alike. If they look so good, how can they be sick? How come yesterday was good but today isn't? How can they smile and laugh so much? Why aren't they depressed? Are they faking it? They can't really be that sick... Actually, we are that sick.

Instead of being scrutinzed for the way we live our lives for the most part... shopping, laughing with friends, talking about topics other than illness and how sad we are... we should be praised, adored, and admired. We should be given a pat on the back for muscling through and finding the meaning and joy in every single day we live. And, just because I feel alright today, does not mean I am getting better... does not mean I will feel alright tomorrow (or even tonight for that matter). Just because I don't cry every minute of every day does not mean my pain isn't real. It simply means that I have found a way to accept what has happened to me, but it doesn't mean I'll ever like it.

We aren't the ones who are in denial... it is actually the people in our lives who are more in denial than we are.

This is my life. I get to choose how to live it. Not you. Me.

We all have the stereotype of a sick person in our heads, but sorry to burst your comfortable bubble, that is not me.

I have to get dressed sitting down after I shower. It hurts too badly. I sit on the toilet so I can put my clothes on... I own a wheelchair, but I don't use it. It's the wheelchair or vicodin. I choose vicodin. I'm getting worse. I'm 23 years old... but I'm not mad about it, so why should you be?

I choose to focus more on enjoying my life while I am still here, and living a life filled with good so that others can enjoy it when I am gone. I think that seems better than wallowing in my own sorrow. Don't you?

Why Not Me?

As far as RSD goes, my case seems to be shaping up as one of the more desirable/hopeful cases that I know of at this point in time. There is a space occupying lesion literally causing my RSD (scar tissue), which makes one assume that my RSD can be eradicated by removing the object/affected, angry nerve from the equation and treating the RSD with IV ketamine. I have amazing parents who have joined with me in chasing remission (emotionally and financially), and I have done my part by keeping myself in the best physical, mental, and emotional states possible during this time. But, I still can't help but feel what I equate to "survivor's gulit," especially since insurance coverage is looking like a battle we don't have to fight. I find myself asking that age old question, "why me?" Why am I lucky enough to have such a good chance at remission? A great support system? Insurance? Ect...?

I asked, "why me" when my pain first started three years ago as well, but the question that should be asked instead is, "why NOT me?" I see life as a string of random occurrences and it is our jobs as human beings to make meaning out of and take from each experience. For some, illness creates a shift in priorities and how one sees the world. For others, world view is narrowed and their heads become burried in sadness and pain. By my own efforts (with the help of some very important peopple in my life), I no longer only look at RSD for what it has taken from me, but I see this disease for what it has given me. It's greatest gift has been a greater compassion and empathy for my fellow human being, and with this gift, I plan to dedicate myself as a life long advocate for RSD and chronic pain sufferers.

After graduate school, my work as a licensed social worker, concentrating in clinical therapy, will help me do so, but I also plan on advocating for the fair treatment of chronic pain sufferers, especially in their battles against insurance companies. Why not me, right?

Now that athletics are no longer a part of my life, one of the ways I can express myself and my personality is through my clothing. I live for bright, bold, beautiful colors like yellow, orange, pink, purple, etc... Sorrounding myself with bright colors does more than just make my quirks available for all to see. It clearly reflects my mood and effects my mood as well as the moods of those around me.

Attached to the brain are pineal glands, which control the daily rhythms of life. When light enters through the eyes (or the skin) it travels neurological pathways to these pineal glands. Different colors give off different wavelength frequencies and these different frequencies have different effects on physical and psychological functions (http://www.essortment.com/all/whatiscolort_rime.htm).

Let's take a look at some of my favorite colors:

Yellow: energizes, relieves depression, improves memory, stimulates appetite

Pink: used in diet therapy as an appetite suppressant, relaxes muscles, relieves tension, soothing

Orange: energizes, stimulates appetite and digestive system

Violet: suppresses appetite, provides a peaceful environment, good for migraines

Try this today: Even if you are bummed, put on that yellow shirt or buy those gorgeous purple flowers and put them in your room. Don't just accept that awful mood. Do something to turn it around, and bold colors can be a great place to start!

Roller Coaster

"My heart is crippled by the vein that I keep on closing

You cut me open, and I keep bleeding..."

I'm sitting on my couch right now after a grueling stretch/PT session (it's been a painful 24 hours). You see, I have to wait a while before I will be able to stand up long enough to take a shower semi-comfortably. Across my finished basment, I can see pairs of socks placed randomly, and I can picture several other locations throughout my house where I have taken them off and left them. It's as if each little bundle represents yet another moment where my pain has been too great to even bare the pressure of a cotton sock on my foot. Like little battle zones...

I foolishly agreed to go to a film screening (that was yesterday) with a friend a month in advance, thinking that I could do something so simple (that NEVER crosses the minds of most individuals) as make plans early. While the night was lovely, the film was phenomenal, the company was precious, and my dress was exquisite, :-) it ended as most nights out end... with me in a lot of pain, feeling like a burden, and exiting quietly so as to not ruin the night for everyone else. Because the only seats that were available were the ones we sat in to watch the film, I spent half the night in a very familiar place, sitting on the floor, while all the "normals" mingled. The view from sitting on a floor around "normals" is quite an interesting perspective and one that I wish I could experience only once or twice in my lifetime. But, alas, I sat upon my thrown staring up at all the people I wish I could be just for one night.

I still get the feeling that most people, even family members, have no idea how disabling my disease is sometimes because I am so damn tough AND because I have the occasional "good day." Four vicodin and a glass of wine later, I felt no relief whatsoever last night. Being Miss Anti-Medication, I hit a point where I said, "Nothing is worth putting so much shit into my body." I had to round the troops (aka whatever I had left in me) and call for backup. I spent the rest of the evening alone in my recliner begging for mercy. I suffer silently most of the time. It's just my life now, so why put everyone else around me through it too?

I have a possible light at the end of the tunnel 2+ weeks from now, but I can't worry about that when "the now" exhausts my daily supply of fight each day... when "the now" kind of sucks.

See how much of a roller coaster this disease is? Compare this post to the last one...

Freedom

"To sit patiently with a yearning that has not yet been fulfilled, and to trust that, that fulfillment will come, is quite possibly one of the most powerful "magic skills" that human beings are capable of."

Funny how just when I have learned how to cope with a chronic illness, when I have accepted the present moment and learned to love it for the good and the bad, when I have learned to love myself and notice the "perfect" in my imperfections, when I have learned some of the greatest life lessons in only 3 years, a glimmer of real, palpable hope appears within the darkness. It's as if some force (not god lol) said, "Okay, she's ready now." I'd like to call that force "positive energy" within the universe, because over the years, I have begun to believe that positive energy attracts positive energy. All the good that has happened to me within the last several years started to occur when I walked through a period of self-discovery and self-transformation. Whether I find remission or not, I will continue to believe this, because of all the good in my life.

Victory is never as sweet as when it comes after a long, hard struggle. I have the next 19 days to prepare mentally, emotionally, and physically for (hopefully) the last battle in this war.

citius, altius, fortius.

faster, higher, stronger.

The Best News Yet

My wonderful doctor was still concerned about scar tissue from my previous surgeries creating an "angry nerve" response (causing my RSD), and if that is the case, the ketamine will not have a lasting effect whatsoever. He gave me a few shots to numb the nerve that has the scar tissue near it, and my foot become warm and had no pain! Great news! This means he will do cryosurgery on me the morning of my infusion to kill that nerve and perhaps I will be rid of RSD forever! There is hope for me!

Never give up hope. Stay strong, stay determined, and keep searching. I think there is hope for all of us...

It's My Lucky Day!

My IV ketamine infusion has been moved up from June 16th to April 21st! Yipeeeeeeeeee!!!!!!!!!!!!!!!!!

Good things DO happen to good people :-)

That About Sums It Up

"Reflex Sympathetic Dystrophy, aka RSD, is a progressive unpredictable illness which presents itself as a multi-symptom disorder that can involve any part of the human body. Your body becomes hypersensitive to many physiological responses and these vary according to each individual. The intensity of the pain does not correlate to the initial injury. A minor or traumatic injury sets off the fight or flight mechanism in our central/sympathetic nervous system. This response is a part of an internal communications network that can have an effect on every aspect of your daily life. Your mind and body are continually in a state of havoc. This causes you to become isolated and withdrawn. It takes you on a roller coaster ride of terror, frustration and disappointment (http://www.rsdaid.org/articles/article03.htm)."

That about sums it up...

It's scary to be faced with the frustration, terror, and disappointment that comes with the daily roller coaster ride that is RSD. I just never know how I am going to feel from moment to moment. The saying, "take it one day at a time," means absolutely nothing to me. It has become one moment at a time.

In the past, I have been known to push myself into a terrible pain flare trying to live a "normal" life (normal as in walking), but I have never experienced the shock, frustration, and sadness that came with yesterday's break through pain. My puppy was taking a nap in his crate, so I took the free time to relax. My pain flared while I was laying down on my floor watching tv. Yes, laying down.

It's interesting to be able to feel yourself being taken over by a disease (whilst fighting it as best you can) and to also watch it in your mind's eye as you replay the past and compare what you were able to do last week to what you can do this week.

It's rare for me to be able to leave my house and take part in a "normal" activity without taking an opiate (that doesn't even work well). My pain flares while relaxing. I can't shop in one store without sitting on the floor several times because of the pain...

Remember when I used to run dozens and dozens and dozens of miles a week? I do... fondly.

Off to the hospital in NYC today. Happy, healthy thoughts are greatly appreciated.

"Is anybody listening

Can anybody answer my prayers

Please say yes

Does anybody feel the same

And is there anybody who cares

Life’s unfair, its so unfair..."