Negative Reinforcement

This post was inspired by one of my favorite people/my psychiatrist who has helped me in so many ways (I sleep now!) and is basically a great man:

Operant Conditioning is the term used by B.F. Skinner, a prominent figure in psychology, to describe the effects of the consequences of a particular behavior on the behavior's future occurrence. Negative Reinforcement is a term used to describe something that strengthens a behavior because a negative condition is stopped or avoided as a consequence of the behavior,

Again, why do I go into this psychology blabber?

I was speaking to my psychiatrist about the burdens of RSD, particularly the physical therapy, stretching, strengthening, and movement that is required to maintain my health or at least slow the progression of the disease. It's quite the burden because #1. IT HURTS! and #2. it's tedious, and sometimes I just don't feel like doing it (especially when I am in a lot of pain already, and I know it will only cause more discomfort in the moment). He brought up the fact that what I do every single day is a type of negative reinforcement, and being a psychology and sociology girl, I loved the reference.

My daily routine STOPS a negative thing from happening to me. It only keeps my disease from progressing quickly. It DOES NOT put me any closer to remission.

I'm not sure why I posted this other than the fact that I love psychology and that RSD sucks. :-)

Save Me

"Somehow I'm still alive inside

It took my breath, but I survived

I don't know how, and I don't even care..."

As any RSD patient (or chronic pain patient) knows, it is easy to feel helpless, hopeless, and pessimistic, especially when countless treatments fail, as they often do with chronic pain. Because the physical sensation of the pain is ever present (and a constant reminder), it is extremely difficult to keep it out of one's mind. Depression is often a likely outcome, and with depression comes the tendency to catastrophize, or have irrational thoughts leaning toward "worst-case-scenarios" as outcomes.

Research indictates that there is a strong correlation between patients with chronic pain and suicidal ideations, suicidal attempts, and completed suicides. Patients with various medical conditions who complain of pain appear to be at an increased risk for the above mentioned compared to patients with illnesses that do not have pain as a major symptom/side effects. Also, the development of suicidal ideation is time-dependent, meaning the longer the pain duration, the greater the likelihood for the presence of such ideations. Kind of scary, huh?

These findings highlight the need for routine evaluation and monitoring of depression and suicidal behavior in chronic pain patients, especially for patients with a family history of the two. Attention MUST be payed to the mental health aspect of chronic pain, and the sooner, the better.

I would be lying if I said I did not consider the benefits of suicide, knowing very well that I could not and would not ever complete the act. There is a strong appeal in "escaping it all" (at least for a little while) when one lives with pain day in and day out. Apart from the depression aspect of suicidal ideation, sometimes the physical pain and discomfort are that traumatic to warrant a need for an escape (besides being drugged up on enough pain killers to ACTUALLY GET RID OF THE PAIN for once).

My fellow sufferers, if you are having thoughts of suicide, please tell someone you know and trust. If nothing else, silently get thee to a professional immediatley. It does not have to be this way, and there are professionals out there who will be more than happy to help you regain your quality of life and sense of mastery. YOU are an asset to this world. YOU are capable and strong. YOU are fabulous... pain and all ;-)

RSDers Could Star On Broadway

"Dramaturgy" is a sociological concept stemming from social interactionism and first coined by Irving Goffman, a prominent and brilliant figure in the field of sociology. Goffman argues that human actions are dependent upon time, place, and audience, and the self is a dramatic effect shaped by the current situation. For example, one does not present the same self in the classroom as one does with friends. We all have the tendency to play several different "roles" in our lives from mother, to daughter, to student, to co-worker, etc... These roles require certain but different actions, each with their places and times.

In a dramaturgical society, a result of this role playing can be dramaturgical stress. This is a type of emotional stress generated by role playing, and it is induced when an individual perceives his/her chosen face or performance in a given situation to be inconsistent with the concept of self he/she tries to maintain (the true self). Stress is created by managing the impression one makes on others and particularly by being forced to keep up social appearances which are inconsistent with one's feelings about oneself. Underneath that sociological blabber, the meat of the concept is a feeling of stress when one cannot be on the outside who one feels he/she is on the inside for whatever reason.

You may be asking yourself why the hell you just read those two paragraphs, but I have a point, I promise. Dramaturgical stress is a sociological concept that I adore and feel has roots in chronic illness. Think of a time when you were in pain or felt ill, but you had to be somewhere with someone or a group. Did you "put on a happy face?" The answer is probably yes, and for someone with a chronic illness, there are many many days (too many to count) when he/she has to "put on a happy face." It is difficult not to present a false self because good days have a tendency to come few and far between. What should we do, then? Be grumpy and cry always? We cannot because that attitude is what can put a strain on our social support networks and drive important others in our lives far, far away (not to mention possibly lead to mental illness).

Chronic illness sufferers walk a fine line between healthy expression of emotion and healthy denying of emotion (at the right times). Dramaturgical stress almost seems inevitable, does it not? What I strive for is to regularly be with my negative emotions on certain days, and I even alot a specific amount of time (or a whole day) to be mad at the world.. I cry, I scream, I kick, and then I move on with my life. It has a rejuvenating effect! Denying of emotions can be fatal causing all types of mental, emotional, and physical consequences. It is extremely important to have those bad days when they are called for, because believe it or not, being sad sometimes is the healthy way to live your life with a chronic illness.

No Time To Dwell In The Life Of A Chronic Illness Sufferer

Perseverance is the hard work you do after you get tired of doing the hard work you already did. ~Newt Gingrich

Yesterday was a sad/frustrating day for me. It was one of those days where I would trade just about anything to rid myself of RSD. I sat at my kitchen table with Patrick crying, and I muttered through the tears, "This is my very own personal hell." To take an athlete's legs away from her is cruel and seems like one sick joke. It's as if someone tailored a disease just for me, thinking, "This will REALLY get her!!!!"

But, alas, life goes on. The sun still rises and sets, the seasons still change, and I'm still in pain. This morning when I awoke, I was able to make the fabulous choice each of us are lucky enough to make each day: "Who do I want to be today?" I decided I want to be the same girl who smiles, who laughs, who treats her diseased body well with movement and a healthy diet, who takes care of her puppy, and above all else, who lives in the moment and finds the joy that is there. Life calls, and just because I have RSD does not mean I get to skip out on it.

I can't say it's easy waking up each day and making these decisions (especially after a day like yesterday), and sometimes my mind and my body are so exhausted that I would rather not make these decisions, but I do. We RSDers don't get to call TIME OUT no matter how rejuvenating it would be to take a break from life, so you should not either.

Today is calling you, too.

Reality Hit Me Upside My Head

Disabled: Impaired, as in physical functioning

I'm "disabled," and I had no idea. Okay, I had some idea deep down, but I chose to believe otherwise. I can't walk, I can't stand (both for more than a very small block of time), I can't run, I can't jump, but I was not aware that my disease had progressed so much until I tried to test my limits. On the daily, I know my boundaries and choose not to go over them (and do very little) because of the consequences. I've never actually tried to go beyond my limits, and when I did, it was a rude awakening. I thought I could take some extra medicine and take my pup for a short walk in the woods, but the medication can't even do it's job anymore. I made it about three minutes down a dirt path before the pain and reality hit. It was sobering.

I am in bad shape and tremendously limited in my daily activities. This lead me to another realization: I either need to be severely limited always or be medicated wayyyyy more than I am right now to live a semi-normal life. I can't even go shopping in one store anymore without sitting down on the floor several times to lessen the pain and regroup. I had a vision of what I could do in my mind, and it did not include only 3 minutes of painful walking with vicodin in my system.

It could be worse, but this fucking sucks. I'm slowly getting worse every single day.... I need ketamine, NOW.

Buzz Kill

I woke up this morning more hopeful than usual with a renewed fight and urge to "push it" a little. I ran around the yard for a few minutes with my dog, and then, I did my "rehab" (strengthening and stretching). Although it hurt, I felt great... like I was making progress... like somehow I was going to put myself into spontaneous remission. Then, BAM! Severe pain flare after I showered. Again, my hopes are crushed. Am I delusional? Too motivated? Too hopeful?

This has been a trend with me for the last three years. Everytime I have a "good" day, I see remission in my future, and I see myself "only going up from here." No matter how many times my high hopes are torn down, I relentlessly get them up again knowing the current trend. It seems I cannot help but think this way! What's a girl to do?

Mind-Body Connection

Below is the link to a great article posted on the Facebook by a friend and fellow RSD sufferer.

'Boot Camps' Treat Pain Sufferers

http://www.nytimes.com/aponline/us/AP-Chronic-Pain-Boot-Camp.html?_r=1&oref=slogin

I love this article because it talks about the stationing of several specialists under one roof in pain management. They are assembled as a team and therefore can consult with oneanother, which is rare in the medical field. Mind-body dualism is an antiquated notion, in my opinion, and this article makes the argument well with proof from chronic pain patients who thrive in a "mind-body connection" environment.

"That's Me In The Spotlight Losing My Religion"

"A new survey finds that 85 percent of U.S. doctors believe religious faith can help patients have a good outcome. Researchers polled 1,144 doctors for the study, which was published in the Archives of Internal Medicine, The Los Angeles Times reported. Only 1 percent said they believe religious faith and spirituality have a negative effect, while 2 percent said it has no effect and 12 percent said they think the positive and negative effects are balanced (http://www.restministries.org/invisibleillness/invisibleillnesshome.htm)."

I am not one for religious faith, but according to many, religion and prayer can have a profound effect on the lives of the chronically ill (when used correctly). Like anything, religion and prayer have the ability to be abused to the point where they can become detrimental. I have witnessed both of the aforementioned and choose to abstain from religiosity in my own life for many reasons.

When asked about my religious faith, I say the words, "I'm an atheist," with pride just as someone who is religious would announce their faith. Coming from a liberal arts college in this day and age, this was no shocking statement in my circle of friends, but for many, it can be. I believe in many things but a higher power is not one of them. My faith is deeply rooted in myself and my strengths/abilities. After all, isn't the only person we can 100% count on at all times, no matter what circumstances, ourselves? We cannot control others, but we do have the power to control our own actions and reactions (which is what I love about the self).

My adored friend/former therapist sent me this quote in an e-mail: "Each moment describes who you are and gives you the opportunity to decide if that's who you want to be." Every morning when we wake, we get to choose who we want to be that day and what we want to do. It's quite beautiful, you see, because we cannot do that with another individual. What power we have!

Even as a young girl, I never had the need for a higher power, and as I grew older, I was then able to do my own research and make my own choices on the matter. By high school, I knew there was no room for a god in my life, but there is room for the power of me.

"I don't spend much time thinking about whether God exists. I don't consider that a relevant question. It's unanswerable and irrelevant to my life, so I put it in the category of things I can't worry about." -Kaminer

A Case Of The "Shoulds"

A dear friend of mine with a chornic illness inspired this post today...

SHOULD

1. Used to express obligation or duty: You should send her a note. 2. Used to express probability or expectation: They should arrive at noon.

Life with a chronic illness is full of "shoulds." I should stretch. I should get up. I should be better. I should go shopping. I should go out tonight. It's not that we don't want to do these things or are too lazy like some individuals who mutter the words, but it's that it's too painful or we just physically cannot muster up the strength and energy to get up and go.

What would our lives be like if we stopped "shoulding" ourselves? Probably pretty great! The expectations would be gone, and we could live in the present, the now. "Shoulding" ourselves is almost a form of punishment as if we are chastizing ourselves for being exhausted, for being in pain, and for being ill. Isn't the illness punishment enough? I think so.

How about instead of using the word "should," we say, "I'm going to exert healthy control over my life by not (insert activity here), because it simply would not be good for me at the present moment." I like that better :-)

Shoulda, woulda, coulda?...nah.

Proud Mommy...

Don't Worry, Be Happy

Positive Psychology is a new branch of psychology which focuses on the empirical study of positive emotions, strengths-based character, and healthy institutions amongst other areas of research. It's research shows that it is possible to be happier, more satisfied, more engaged with life, and have high hopes regardless of one’s circumstances. Most of psychology focuses on life's problems and how to remedy them while positive psychology focuses on the aspects of life that make it worth living. Happiness is defined as a state of well being or pleasurable experience, and while positive psychology involves the definition of happiness in it's research, it shifts it's main focus to the characteristics that allow individuals and institutions to thrive in any given circumstance.

Positive psychology is not the same as positive thinking or a constant state of optimism, because it allows for negative or realistic emotions when they are appropriate. Denying certain realistic emotions can create more distress than allowing them to be experieced and expressed. The research done in positive psychology is a great supplement to the current research and findings in the branch of psychology that focuses on and aimes to remedy human problems.

Here are some of it's findings:

--Wealth is only weakly related to happiness both within and across nations, particularly when income is above the poverty level (Diener & Diener, 1996).

--Healthy human development can take place under conditions of even great adversity due to a process of resilience that is common and completely ordinary (Masten, 2001).

-- People who express gratitude on a regular basis have better physical health, optimism, progress toward goals, well-being, and help others more (Emmons & Crumpler, 2000).

--There are benefits associated with disclosive writing. Individuals who write about traumatic events are physically healthier than control groups that do not (King, 2001).

Being a major psychology fanatic, this entry is right up my ally, and it also gives great insight into what is needed to survive and thrive during a traumatic event, a.k.a. RSD. If I had to create a list of the aspects of my life which have helped me to thrive through a chronic illness, I would say social support, optimism, stress management (learned in therapy), positive thinking, setting goals, remaining physically active to the best of my ability, etc... have been the difference between happiness/personal development and a deep, deep depression (add insurance to that list!). I can tell you one thing for sure, I like being on this end MUCH, MUCH better.

My Struggle Today

How do you change who you are at your very core, and is that even possible? This is my struggle today. Having RSD, I feel as if my spirit and who I REALLY am is suffocated. I have boundless energy, a need for physical activity, and a need for adventure. I thrive on the "get up and go," "fly by the seat of your pants," and with RSD, that me is squished down. I almost feel as if my soul is chained to the chairs that I am constantly looking for and sitting in.

No matter how well I accept the now and my disease, I cannot shake that feeling of suffocation. My brother has a passion for movies, everything about them, and he loves to read. If someone with the same interests were to have RSD, maybe their spirit, their joy would not be so suffocated?

My father tells me stories of me as a small child hanging upside from monkey bars all day long and jumping from heights hoping someone would be there to catch me when I fell (but not really caring). He struggled to get me inside. That was me as a child. That is who I am at my very core. Those are the things that fill me up. Physical activity in nature and the freedom that comes with lights me up inside. There are many aspects of life that bring me joy and make me smile, but there is a small hole in my core that cannot be filled while I have RSD. I accept that, but it doesn't mean I like it.

I don't know if this comes off as an indeciferable ramble or if it makes sense to anyone but me... but I needed to purge my thoughts today.

"Only The Good Die Young"

I was in a lot of pain when this photograph was taken. Isn't it impossible to tell? Give someone a break today who doesn't look disabled but has a handicapped sticker, or who looks perfectly healthy but is walking slllllllowly infront of you, or someone you know with a chronic illness that doesn't "feel" like going out today... because they probably feel the way I felt in this photograph (more or less).

It's absolutely insane how the first third of the day yesterday I was in a lot of pain, the second third of the day, the pain flare subsided (remember, I'm always experiencing some level of pain), and by the last third of the day, I was in pain again. This morning I wake up in a lot of pain all over my body, I force myself to run after my dog for ten minutes, I stretch, and the pain gets better. I wonder how I will feel tonight? I just never know, and that seems to be a trend with my fellow RSDers.

Today is a very contemplative day for me. You could even say I am struggling a bit with a few aspects of this disease and myself. I'll figure it out. I always do.

The REAL "No pain, no gain."

"I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I–

I took the one less traveled by,

And that has made all the difference."

I am always surprised at how quickly muscles weaken, tighten and can be rendered useless when they are not stretched and used daily (if not several times a day) with RSD. I would love to save up my activity for one big, active event that I haven't done in years but alas, that’s a flaw in the system of my disease. When I wake up each morning, it feels as if all of my insides are pushing through my skin and trying to escape. I am stiff, sore, and my legs from the knees down burn. You would think that one should RICE (rest, ice, compress, and elevate) like with most injuries, but those four acts could mean the spread of RSD and perhaps disability.

The motto for my disease should be, "When in severe pain, MOVE!" Sounds like an oxymoron to me, but it is reality for someone living with RSD. I am not aloud to RICE one day of my life, for if I do, you may just catch me in a wheelchair forever. And, isn't that mean? When RSDers are in pain, the only way to stop the spread of the disease is to inflict more pain?!?! Yes, you heard it right. That seems like a great reason to load up on the pain killers that I am given by my doctors, huh? Absolutely not. Opiates are highly addictive and lose affectiveness with consistent use and, even more so, with consistent abuse. As if I need another problem to add to my list, and I make that choice every minute of every single day. I also make the choice to keep moving so that I can slow the spread of my disease, to not be depressed, to not be angry, to live life to the fullest, to be thankful for all the good in my life, etc... Have you any idea how easy it is to NOT do these things when afflicted with a chronic illness, especially a very painful one?

Most of us make hundreds of choices each day. What to wear? What to eat? Where to go? Who to call? But, the choices of someone with a chronic illness can be so important to his/her survival that it is almost too difficult to imagine unless you have been there yourself.

Today, let's make good choices, ill or not.

Happy Easter

"Just give it time

It's gonna get better

Now is not forever at all

Just give it time

Everything changes

Tomorrow comes, today will be gone

Everything's gonna be fine

Just give it time, give it time."

Happy Easter to those who celebrate! I do not believe in a god, so Easter means no more to me than a day to spend some time with the ones I love the most in this world...and I do love those days :-)

I had a lovely swim this morning. I'm trying to learn how to freestyle swim quickly and efficiently (there goes that athlete in me...it's hard to quiet her). It's a fantastic workout, but the kicking can start to hurt my legs. I need to be careful and really listen to my body.

I'm feeling a bit under the weather today. I'm fighting a cold, and my whole body is extremely achey/burny from the RSD. I did a little too much frolicking with my pup yesterday in our yard. He enjoys when I chase him for the squeaky ball, and most of the time, it's really hard for me to look at that big nose of his and decline. What is a mommy supposed to do?! Unfortunately, I will spend today paying for what I did yesterday. It's a common trend for us RSDers.

With that said, imagine if a genie came and granted you three wishes! What would you wish for? I wouldn't wish for fame, fortune, eternal life, super powers, or any other common wish out there.... But, what would I wish for? I'm not so sure...

1. Remission (of course)

2. That I had the clout and the means to help people in BIG, BIG ways

3. ................... (I can't even think of a third one)

But, what are wishes exactly? They are tell tale signs that you are not happy with the present moment... that you are not living in the now. On the way home from the gym and driving past one of my favorite sets of trails, I thought to myself, "Man, I wish I could run today." The sunshine, blue sky, and high pain level always makes me wish I could get back on those trails like I used to and show them what they've been missing. Unfortunately, it also means I'm not living in the present moment, and when you don't live in the present moment, moments pass you by. I don't even want to know how many moments I have missed worrying about other things, but I am finally starting to gain a sense of peacefulness for the first time in a few years. Forgetting about what I wish I could do helps me take days like today, days that are very painful and uncomfortable, with grace and stride. They will pass. They always do. And, it is my job to find joy in the moments that I usually wish could end.

Today, let's be mindful of the present moment.

:-)

Look How Big!

My little sweetpea has grown so much! He's just shy of four months old and he is already 26.2 pounds. He should be between 60-70 pounds full grown, and tall/lean like a standard poodle with his little golden retriever head. Because of the timing and the love and sacrafice behind the action (especially for my mom), Shorter may very well be the best gift my parents have ever given me. I've never had a friend who makes me laugh so much, and laughter is the best medicine. Thanks mom and dad! My love for you has no boundaries. xoxoxo

My Yellow Aura

Yesterday, while browsing the bookstore shelves, I thought it would be entertaining to take a test and find out the color of my aura. I came to the conclusion that my aura is yellow (one of my favorite colors since I love to wear and see beautiful, bold colors). As I flipped to page "yellow auras," I wasn't expecting anything more than a few sentences worth noting, but I was pleasantly surprised with what page "yellow auras" had to say!

"Yellows are the sunniest, happiest and most childlike personalities in the color-spectrum. "All I want to do is have some fun!" is a song which is a wonderful representation of Yellows and shows their easy going, light and sunny character. These playful people have a wonderful sense of humor. They love to laugh and intimately enjoy life from many different angles. They advocate relaxation, the pure joy of life and live spontaneously. They are always reminding other people to not take life too seriously and to always look on the bright side. Life and work should both be enjoyed. A Yellow's primary motivations are enjoyment, entertainment and creativity. They measure life by how happy and content they are and how good they feel. "Life is like a box of chocolates, it is sweet and a lot of fun." Yellows are intelligent, bright and radiant personalities. They learn easily and receive information without asking about the deeper connections or reasons behind it. They love to work with their minds and equally love to play and occupy themselves with philosophies, mental ideas and concepts. They also enjoy discussing all aspects of life, from politics to spirituality. Yellows can be spontaneous and overflowing with artistic and creative ideas. However, their focus is much more on enjoying than it is on creating. They have an abundance of energy, which is easily recognized by their physical activeness. It is difficult for them to sit still for a long period of time. However, when this occurs, they have a constant need to be moving their hands.

Yellows are the most child-like personalities in the color spectrum and they never want to grow up. As a result they generally look younger then they actually are. They love to travel, to see the world, to relax on a wonderful beach and have fun dancing all night long. You will immediately recognize if a Yellow is happy, sad or feels uneasy, because they emit unusually strong body language. A Yellow body never lies...They love to be around people and enjoy helping people...All these qualities make Yellows excellent healers or therapists.

...Because of their sensitive, physical, bio-chemical bodies, Yellows do not like pain or even the thought of having to experience it. They will do nearly anything to avoid any form of discomfort. Fun-loving Yellows are addictive and physically dependent personalities. They have a driving need to experience a physical "high" or a euphoric state of mind. If they focus on positive activities they remain energetic, joyful and creative.

Yellows need to take care of their physical bodies more then other color personalities. Their body is like an "energetic" antenna. They sense other people's feelings, thoughts or even vibrations in a room. If they do not stay in power their body will show imbalances and can be heavily effected by outside influences. They also know exactly what the Mind/Body connection means. They are perfect examples of how emotions and thoughts influence and are interconnected with the physical body (http://www.geocities.com/goddesslit/yellowaura.html)."

"Have a hard time sitting still; they have a lot of energy running through them; fidgety.
Need to stay physically active to be happy; most Yellows like to exercise regularly (http://russellrowe.com/yellow_aura_color.htm)."

This information is a spot on way to describe me. In fact, I have often described myself in this way several times before encountering my the news of my yellow aura. One of the facts that caught my eye the most (while reading on the floor of the bookstore) was the "yellow's need for physical activity to remain happy." Without a way to exert their energy abundance, yellows are prone to depression and anger. HELLO! Talk about my life during the past three years! This exact fact was one of the most important aspects of myself that I learned in therapy. Being aware that my anger and sadness came from my new limitations, incessant pain, and lack of physical activity has helped me tremendously ever since. You cannot change what you don't acknowledge (not that I can change my cravings for movement 24/7, but I can learn how to cope when my physical activity is limited). Thank goodness for pools and the breast stroke!

It's difficult to realize how much we REALLY don't know ourselves until we are put in a situation where our survival depends on learning who and what we are. Isn't it time you did some learning?

I Suffer A lot, Yes...

I suffer a lot, yes, but I think nothing of it. This is my life, and I enjoy every day that I wake up, especially when I am still able to stand on my own... especially when RSD has not ravaged my entire body (you should see what this disease can do!!!!). But, my mom cries two tears, and I think the sky has fallen, and the world is about to end. I would rather suffer tremendously for the rest of my life than watch my parents or brother shed one tear. I think it is because I know what it is like to suffer, and the thought of anyone else walking my (past) path of despair, more or less, is something my heart cannot take with ease.








I always wish there was more I could do.

Shorter!

"Why wont you tell me that

It's almost over?

Why must this

Tear my head

Inside out?"

Grief is a multi-faceted response to loss, and it commonly focuses on the emotional although it also can have physical, cognitive and behavioral, amongst other, ramifications. When one thinks of grief, they often think of the loss of a loved one, but loss and grief can come in many different forms from the loss of a job to the loss of one's physical health. The fives stages of grief, denial, anger, bargaining, depression and acceptance, commonly referred to as the "grief cycle," are often universal to any type of loss.

The Grief Cycle

1-Denial-"This can't be happening to me." No crying. Not accepting or even acknowledging the loss.

2-Anger-"Why me?" The grieving person may then be furious at the person who inflicted the hurt or at the world for letting the loss happen. He/she may be angry with himself/herself for letting the event take place, even if the control is out of his/her hands.

3-Bargaining- Attempting to make deals with God or the universe to stop or change the loss. Begging, wishing, praying for what was lost to be given back.

4-Depression-Overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning the loss as well as the hopes, dreams and plans for the future. Feeling lack of control, feelings of numbness, or even suicidal ideations.

5-Acceptance- When the loss is accepted and not just beared quietly and regretfully. Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals turn toward personal growth, and we become well-adjusted individuals, often thankful for what we have gained from the loss.

Experiencing my own type of grief, I'd say those stages are true to the reality of loss. I often find myself going back and forth between wishing this was over and I could get back to my "normal" life and being thankful that ths happened. What a dichotomy of feelings and desires! I can now say with certainty that my TTS and RSD are not losses because of what I have gained from them. I feel as if I have learned lessons that some take a lifetime to learn or, worse yet, never learn at all. I have become a more confident, compassionate, empathetic, thankful, and focused woman. I now know who and what I am and what I stand for, and best of all, I can sit alone in a room with myself and like my own company because I like who I am. Now, that's pretty neat :-)

I DO wish that the physical pain was over just because.... IT HURTS! Ouch! ...and it limits me so much at this point. All I wish for is that one day I will be able to take my dog for a walk longer than just a few minutes. I think that is a humble goal.

Therapy Is Awesome

I often get praised for my optimism and positive attitude by people who meet me, but it wasn't always like this. I had to work VERY hard with a therapist to break some nasty habits and emotional disturbances that emerged when my health problems first started to occur. Through a therapeutic relationship with a licensed social worker, I learned specific tools that contributed to my current optimism, such as cognitive restructuring and thought stopping.

Cognitive restructuring is the process of learning to combat cognitive distortions, faulty thinking, with the ultimate goal of replacing the false, irrational thoughts with more accurate, healthy and beneficial thoughts. Pretty much, it is changing the way you think about yourself or your situation when dealing with a chronic illness. First, you must be aware of your unhealthy thoughts before you can restructure your thinking patterns.

Thought stopping is the substitution of a healthy thought for an unhealthy thought. If I said to myself, "I will never get better," then it was my job to recognize that thought as it was occurring and replace it with a healthy thought, such as, "I will get better because I am doing all the right things to achieve remission." A very useful tool.

I still have moments where I struggle tremendously, but those moments are where the tools and strategies I learned in therapy come in handy. Practice makes perfect. Don't be discouraged if this does not come naturally to you. As my therapist would say, "Fake it until you make it." Soon enough, it won't be such a struggle to employ these techniques. Reforming the self is not an easy task, but if you want healthiness and happiness bad enough, you will work hard to make these techniques becomes habits just as I did.

Feel My Pain

Today sucks. Sucks. Sucks. Sucks. There is no better way to put it. The pain I feel from knees down is relentless, and it has been since I woke up. It's like there is a fire inside my legs, and no one is putting it out. It burns. A LOT. And, all I can do for it is.....oh yea, nothing. I can take pain killers, but all that does is mask the pain for another 4 hours. They don't fix me, which is why I choose not to take them on the regular. Luckily, I have the choice not to. For some, the pain doesn't allow them the luxury of picking and choosing when they can medicate themselves.

Tomorrow, I will feel a little better... like clock work (a little better = can stand up for 10ish minutes a shot instead of being exiled to the recliner all day), but I know that this intense burning pain will be back... probably later tomorrow (or the day after tomorrow if I am REALLY lucky).

***Real Time Update: My puppy is tearing the pillows off the couch. In my attempt to stop him, I lightly bumped my ankle against the table. The pain was unbearable. It brought me to tears, and my pup came to my side afraid of what was wrong. That is what RSD does. You become so sensitive to the slightest stimulii (and some sufferers have it wayyyyyy worse than I do).

For someone who hates medication, I've been forced to take a pain killer just so I can endure sitting in my chair. Doesn't that sound like a nice way to spend the day? Many RSDers will tell you this is how they spend all of their days. I'm a lucky one. My disease is spreading slowly.

Change

"When we are no longer able to change a situation - we are challenged to change ourselves." Viktor E. Frankl

The truth of change is universal, a very important Buddhist teaching. We see change in the seasons, in the climate, in society, and in relationships, and some changes, like birth and aging of the planets, take place slowly over billions of years. Other changes occur very rapidly and consistantly, such as the changes that occur within the cells of the human body. There is never a moment when change is not occurring. In fact, the only consistancy is that change is perpetually in progress. So, why do we as human beings become shocked when our lives change?

Everyone has heard the phrase "the only constant is change," but no one said that the change is always going to be positive. We accept the positive changes, but we snarl at the negative ones while spending countless energy trying to undo them. A true understanding of change is reflected in our life by how we are able to adapt to it. The negative changes should be seen as second chances at life. An opportunity to learn how to adapt. A life lesson. A rebirth.

To the fearful, change is scary and threatening, but to the hopeful and opportunistic, change is inspiring because it challenges them to become better versions of themselves.

How will you change today? I know how I will.

"Time, Why Do You Punish Me?"

"The past has come and gone

The future is far away

Now only lasts for one second, one second..."

With this disease, it is absurdly easy to worry about the future, far and near. I catch myself worrying about how my pain will be in an hour, and I also catch myself worrying about how far my disease will progress by the end of the year. Will I be disabled someday? That's an interesting question and one that not even the most brilliant of doctors can answer for me because THEY JUST DON'T KNOW. So, now what does one do with that information? Easy. She lives for today because that is all she has been promised.

With this disease, it is also extremely easy to look back on the past with nastalgia, before RSD shoved it's way into life. Begging and pleading for yesterday can take up a lot of an RSDers time and energy, but guess what? Yesterday is gone. I'm no longer an athlete. I have RSD, and the "old me" is gone. This is my life now. What does one do with this information? Easy. She accepts today and lives for it because that's all that has been promised.

Live for today.

RSD Can Shove It

I still have fun. Enough said.

Celebration?

Apparently, it's a holiday, but for those with RSD and other chronic illnesses, it's no celebration. We don't get a day off to have fun with the rest of the world. We get another day of pain while all others make their plans for a fun St. Patrick's Day evening. Can you imagine having a day off from pain, and 13 pills to swallow (could be more or less for others), and doctor visits, and dirty looks when you walk slowly or, for many RSD sufferers, use handicapped stickers?

Well, too bad. We don't get a day off, but we do have the choice each day when we wake to decide whether or not we will sulk and cry all day or whether we will live our lives to the fullest. The way we choose to see the world creates the world we see (someone famous said that, I think?).

Make the choice to live on this celebratory day, because every single day you wake up should be a celebration.

HAPPY ST. PATRICK'S DAY!

I'm Not Even Good At Math

My worst experiences in all my years as a student (so far) have been in math and science, and I have struggled to get my A's in those classes. Who knew that by age 20 every day of my life would involve calculations?!

"If I stand in the shower, then I can't drive to a friends house right after."

"If I do some gentle yoga, then I can't go to the store soon after."

"If I leave my house today at all, will I be able to go out with friends tonight?"

"Okay, I've been standing for 3 minutes. That means it's t-7 minutes (tops) before I have to sit down." ***scans for a place to sit***

That is my life every single day. My brain is like a calculator constantly figuring out "if....then..." statements. Did I mention I'm only 23 years old?!?!?!?! NOTHING I do is simple anymore. NOTHING. But, no one sees or hears the calculations I do every minute of every single day, so how would they know what I go through (especially when I constantly wear a smile)? And, how would they know to cherish the fact that they DON'T have to worry about the simple things in life... that the simple things are no longer simple things... they are precious gifts to be thankful for. Nothing in life is gauranteed. Isn't it a shame that it takes an extraordinary circumstance to realize this?

Got Me Thinking

I may seem very tough, determined, and happy, but there are moments where I struggle tremendously. The great thing is that, at this point, I bounce back very quickly. I choose to recognize my emotions (usually fear, anger, and sadness), be with them for a few moments, dust myself off and continue on.

Yesterday was one of those days for me. I called my father crying when I arrived at Pat's house with my puppy because my pain was too intense for me to handle (and I can take a whole lot of pain these days).

I said, "I went swimming, and then I drove home, and then I stood to talk to you, and then I stood in the shower, and then I stood to talk to you again, and then I drove all the way to Pat's house. It was too much without any breaks."

My dad replied, "I know it's frustrating. Those are all normal things you should be able to do. You hopped in the car with your dog smiling. You were just trying to enjoy life."

It really got me thinking. Standing and talking to someone and showering standing up have become SUCH iffy things to me that I completely forgot I SHOULD be able to do them. I made it seem as if I conquered the world and shouldn't have, but all I did was normal, human behaviors.

Special K

Just a quick update on my treatment plan: I will be getting the inpatient IV ketamine infusion on June 16th at the Hospital for Special Surgery in NYC under Dr. Richman. The waiting list and protocol for this controversial treatment is what is keeping from getting it sooner. I would love to get it tomorrow, but I can't.

For anyone considering this treatment, HSS and Dr. Richman are fantastic.

Also, I started Lyrica 2.5 weeks ago (225mg a day), but it hasn't helped one bit yet. I have been given an opiate for the first time in 3 years to manage the pain (clearly I am stubborn and WILL NOT be taking it regularly until I have to).

I tried a lumbar sympathetic nerve block, but it was mainly used as a diagnostic tool. Dr. Richman knew I was too far in for it to help.

Once A Runner

Yes, I was once a runner (also the title of a great book), and although I miss it more than I could try to explain in words, I have kept many of the lessons taught and learned through the sport and appiled them to other aspects of my life. Where they come in most handy is with my RSD. Here are just a few amongst the many:

Motivation

Determination

Stubborness

Courage

Humility

Strength

AN UNEARTHY WILL TO SUCCEED

And, in honor of stubborn, motivated, strong, courageous, etc... runners, here are a few inspirational quotes that could be said only by those who know the blood, sweat, tears, and joy that come from running...firsthand.

"Somebody may beat me, but they are going to have to bleed to do it." --(The Great) Steve

Prefontaine

"Good things come slow - especially in distance running." -- Bill Dellinger, Oregon coach

"There's no such thing as bad weather, just soft people." --Bill Bowerman, Oregon coach and creator of Nike

"Nothing splendid has ever been achieved except by those who dared believe that something inside them was superior to circumstance." --Bruce Barton

"(Scientific testing) can't determine how the mind will tolerate pain in a race. Sometimes, I say, 'Today I can die.'" --Gelindo Bordin

"Even if you fall flat on your face·at least you are moving forward." --Sue Luke

"The man who can drive himself further once the effort gets painful is the man who will win." --Sir Roger Bannister

"There will come a point in the race, when you alone will need to decide. You will need to make a choice. Do you really want it? You will need to decide." --Rolf Arands

"When you see a guy go down, you smell blood in the water." --Anthony Famiglietti

"Lookin' Good!"

I just came back from my morning swim. As a new swimmer (and someone with RSD!), I become tired after 20 minutes of the breast stroke, but each time I swim, I can feel myself acclimating to this new form of exercise. I'm so excited for this new challenge! An athlete by nature and trade, this is something to be happy about.

As I sat in the steam room after my swim to loosen my muscles, two older women were talking about how badly their knees hurt and how it has caused them to gain weight and other terrible side effects, I sat there looking like the above photo. Not one person has any idea what I go through on a daily basis at 23 years old and what I have gone through since I was just turning 20 years old from the way I appear. My ex-boyfriend has told me, "You are the pinnacle of physical fitness," in our past chats about how "healthy" I seem. No wonder so many doctors dismissed my cries for help until I saw my McDreamy for my nerve compressions and then the obvious color changes occurred for my RSD.

Sometimes, I wish there was a way for people to just know without me saying or that I could wear some sign on me that says, "Yes, my pain is real. Please be patient with me. Please help me." Is it a curse that I look the way I do? Is it a blessing? I would say both at different times... but of course I am sooooo grateful that I am healthy in all other ways.

Who gives a s*** what everyone else thinks, anyway?

Small Introduction

*Updated: 4/19/2010

My name is Maria, and I a 25 y/o, raw vegan graduate student with a debilitating progressive neurological disease, Reflex Sympathetic Dystrophy (RSD), characterized by the main symptom of chronic, widespread, burning neurological pain. My body now takes normal stimuli, such as the touch from a loved one, as extremely painful, and I am in constant, burning pain in all four limbs day and night. This illness can strike anyone at anytime, and usually occurs after small or large traumas, such as a bump and bruise or a surgery. I am a year away from completing a Master’s degree in Clinical Social Work, Mental Health, and plan on doing mental health therapy with individuals who have chronic, acute, and/or terminal illnesses. Also, I volunteer my time working for the website and healing community, crazysexylife. Most individuals with my illness, especially at the advanced stage mine is at, are using devices to assist with mobility, are on disability, and can no longer participate in life. Through diet and lifestyle changes and mental, emotional, and spiritual counseling, I have beaten the odds.



My approach to treating chronic pain is unconventional. I focus a lot on emotional and spiritual causes for the onset of chronic illness. Stress and trauma are stored in the body, and if you look closely, you will usually see a stressful life event, such as plaguing low self-esteem, sexual abuse, or a lack of a connection to a higher power, before the onset of the illness occurred.


I would love to write a manuscript about my "illness evolution" and have my story published!

You can contact me at mariamooney@comcast.net

Happy Healing!