Let it go…

March 6, 2014

It is amazing as I look back Disney has always been a guiding light in my life. It seemed that there was always a new movie that fit perfectly into the events in my life about the time the movie was released. I would look to these characters and their stories both as an escape from reality and with hope that I would be consoled, fulfilling my hope of my happily ever after. I really thought that this long standing affair with Disney would be left to my childhood; however, I find that it continues to follow me well into adulthood.

 

Let it Go

The snow glows white on the mountain tonight

Not a footprint to be seen

A kingdom of isolation,

And it looks like I’m the Queen.

The wind is howling like this swirling storm inside

Couldn’t keep it in, heaven knows I tried

Don’t let them in, don’t let them see

Be the good girl you always have to be

Conceal, don’t feel, don’t let them know

Well, now they know

Let it go, let it go

Can’t hold it back anymore

Let it go, let it go

Turn away and slam the door

I don’t care

What they’re going to say

Let the storm rage on,

The cold never bothered me anyway

It’s funny how some distance

Makes everything seem small

And the fears that once controlled me

Can’t get to me at all

It’s time to see what I can do

To test the limits and break through

No right, no wrong, no rules for me

I’m free

Let it go, let it go

I am one with the wind and sky

Let it go, let it go

You’ll never see me cry

Here I stand

And here I’ll stay

Let the storm rage on

My power flurries through the air into the ground

My soul is spiraling in frozen fractals all around

And one thought crystallizes like an icy blast

I’m never going back,

The past is in the past

Let it go, let it go

And I’ll rise like the break of dawn

Let it go, let it go

That perfect girl is gone

Here I stand

In the light of day

Let the storm rage on,

The cold never bothered me anyway


I often find I am trying to see myself through the eyes of someone else. RSD has caused me to become isolated from even myself. My family does not recognize who I have become. In reaching out to others in the community, trust is given freely. People find out who you really are. This song strikes me to mirror RSD. It speaks of isolation, rediscovery of oneself, learning a new life and not looking into the past! Not letting others define who you are is a difficult feat but if you just let it go, the possibilities are endless!

Meet the Staff!

February 5, 2014

RSD/CRPS is the most painful rated disorder on the McGill Pain Scale Index, a little gem of knowledge I am sure you never forget! Sometimes it is hard to remember the other people without our condition who also suffer a great deal. I find I become so drawn into my own pain that I often miss things happening around me. I may miss the first bloom of spring or maybe a child crying because they have lost their parent. No matter how “significant” we perceive the item we missed, it may be the world to someone else. This is why it is important to make sure we also take a minute to look at the world around us.

The admin team at CPRS/RSD Doesn’t Own Me is a family in itself, with our own trials and tribulations. There are times we share the information publicly and other times we feel it would pull away from the importance of support we provide for our members. Despite these choices, we feel that you the members need to know who we are. We want to share a part of our lives with you. Every person on the admin team survives with a debilitating chronic pain condition! Many of us survive the roller coaster we call RSD/CRPS. We have our highs and lows, and days when we must step back to take care of ourselves so that we can be here to take care of you.

Over the coming weeks, we will feature different people from the admin team and some small facts about us. We volunteer our time and spoons to you and want you to feel you know who we are and what we are here to do! Please watch the Facebook page starting today to see our admins highlighted in all of their glory sharing a piece of their soul reaching out to all of you! You are the reason we do this! Never forget how important you are to us all!

Holiday Cheer

Happy Holiday wishes

I want to wish a Happy Holiday to the RSD family. I need to apologize to any of you who follow my Facebook posts and blogs which have become very irregular. You are probably aware that I have been busy with appointments with various specialists. Some days I have to check to make sure I have not turned into Raggedy Ann. My posts have been more sporadic as I get passed from specialist to specialist for more testing in an attempt for the doctors to give me a diagnosis they understand and can treat. At this point I am still unable to find a doctor specializing in RSD to treat me. I have to find new doctors to replace those that no longer want to treat me. A new round of tests begin when I find a new doctor. This last month I became so ill that my mother was not only taking care of me 24 hours a day, but she also had to provide transportation to the 40 hours a week of doctors appointments. I feel like she got a glimpse of what it is like to be in my shoes! I have now added guilt to my list of complaints, now I was robbing her of her independent life too! I remain with my caregivers (parents) as I do my best to successfully make it through this holiday season and have enjoyable memories to look back on. I have decided to use the next few weeks to let my body rest and recover from the constant bombardment of tests and treatments that have been hurled at my poor abused body in the past few weeks. It is my hope that during this holiday season my body will calm down and heal some of its wounds. With rest and recovery I will hopefully be able to communicate more effectively. I am planning to try to keep active; I do not want to lose the progress I have made but I need to remember to appropriately pace myself. 

We come from many backgrounds and have many different ways we celebrate the holiday traditions that we partake in. We need to take a break to care for ourselves so we can enjoy these times and traditions we share with friends and family. Our body needs this quiet time to rest and recover. This can be difficult because family members that do not always know what RSD does to us and are unable to relate with us. You need to make yourself a priority! Make sure that the preparations you make will allow you to enjoy this holiday time with those you love. When you go visiting prepare an “emergency bag” that has your essentials. This survival kit may include medications, iPod, ear plugs, a specific blanket or whatever you need for you. If you are traveling with medication remember to use a lock on the zipper, especially if you are going to be visiting people with children and pets. Keep your drugs locked at all times, you do not want an accident to happen because a curious pet or child thought it was candy. If you are traveling make sure you pack at least 1 week of medication in your carry on. Lost medicines equals increased stress levels.

 

 

I am wishing you the strength you need to have the holiday that will fulfill your childhood dreams. I am praying that our army of angels will help lift you to your feet when your wings are having trouble to fly. May you and your families enjoy a safe and joyous Christmas and New Year.

The right choice comes from within YOU!

September 16, 2013

Like you, I am also having issues in my quest for finding healthcare. I want to share some of my discoveries and “ahh haa” moments with you. I also want to share resources I have been given or found on my own. As my previous blog entries show, I do not want to control my pain with opioids on a daily basis. This is my right as a patient; I will not agree or disagree with what you feel is right for you. I also have a personal aversion to spinal cord stimulators or medication infusion pumps. For me this would not work since it is not worth the risks due to the potential for problems in the future which require future surgeries. I also am not a fan of the limitations that SCS would impose on me. At this point in my treatment I am not willing to consider these extreme treatments however, if nothing else works my decisions may change.

1. This being said, I am straying away from pain management doctors treating my RSD. In my experience pain management doctors only treat with opioids and implants, I want to treat the cause that leads to the pain instead of putting a bandaid on the problem. My recent encounters with Pain Management doctors thinking that I am desperate for them to be my doctor! I will not jump through their hoops; letting them put things in my body (medications or otherwise) as a contingency factor to be seen in their practice. I also will not sign a contract for narcotics that says “I will be prescribed narcotics as my treatment, I will not receive medications from other doctors and I have been explained alternative options, therapies or medications” before I even speak with the pain management doctor! Be careful what you sign, you can be accused of violating that contract and it can make receiving treatment from other physicians difficult. This will allow the doctor to have total control over you and your treatment. Recently I was given forms to be completed before I saw the doctor. In essence, I would have blindly signed a contract stating that it had been discussed and explained when I had no idea what the ramifications would entail. Do not allow any doctor, or any person for that matter, BULLY you into a decision regarding any treatment with which you are not comfortable. You are entitled to second, third, fourth and as many opinions as you feel you need!

2. Neurology, another avenue of treatment for RSD, approaches this disease from a different perspective. My neurologist does not seem to have any interest in my RSD and at my last appointment regarding my migraines acted as though RSD was not an issue he would bother with. This doctor is well known and well regarded in my area thus I will not seek treatment at this time from neurologists.

 

3. Per the new 2013 guidelines for the treatment of RSD Recreational Physical Therapy is recommended. Personally, I have had more success with this regimen in comparison to conventional physical therapy. Targeting your specific needs you may need to employ several therapists each specializing in areas that you enjoy and targeting your specific needs. I currently use horse therapy and due to progress will begin to add ballet for body mechanics and muscle strengthening without using weights. Since RSD has a negative response to stress I will be choosing activities that I enjoy; this will allow me to decrease stress during therapy thus decreasing pain and accomplishing more. My therapists understand my limitations and should be able to alter the “drills” to target my specific needs in working towards my goals. Ballet provides flexibility, joint range of motion and does not add additional weight on the joints while still promoting proper body mechanics to strengthen the muscles through your entire body. Anyone who decreases activity looses muscle in the whole body not just the affected area. Think outside the box! My insurance company is working with me on finding the best plan for me.

4. Chiropractors who specialize in the nerve system can be very helpful! Be careful and do your research. I have gotten a lot of relief from the right one!

5. Recently, I have begun to narrow my search to doctors who concentrate on the Autonomic Nerve System and/or its disfunction. This special interest can fall within a myriad of specialties. The autonomic nerve system is made up of both the sympathetic and the parasympathetic nerve systems. These are supposed to compliment each other, when they are out of balance it allows one to “take over” and be more prominent. Regardless if your parasympathetic system is weak or the sympathetic system is too strong, both of these circumstances can lead to the overactivity of the sympathetic system resulting in RSD, CRPS or whatever name you call this monster. My latest search resulted in an appointment with a cardiologist who was needed to look at some cardiac test results. Looking at his profile I noticed that his site stated that he specialized in autonomic nervous system disfunction. This epiphany made me realize it could be a cardiologist, endocrinologist, hematologist…as long as they were interested in studying the Autonomic Nervous System. Hopefully it is a hit and I will be able to tell you all how to find a doctor to treat the cause and not the symptoms of RSD!

6. The final note for this post is about assistance. Many of us are struggling with finances to get treatment or medications. Jim Broatch from RSDSA provided me with a list of free or decreased/sliding scale payment.

http://www.rsds.org/4/resources/out_work/free_clinics.html

 

Also look at the maker of your medications. For example pfizer and lily are companies that I know have programs for those who qualify where they provide all medications from their brand for free. I also always check online for discount cards and ask your doctor when you are at the appointment if they have any discount cards for your specific prescription. Specific meds that I can think of that have these generally are the brand name like gralise or the new extended release of topamax (ones that you have no generic option). Don’t be afraid or ashamed to ask for help or ask your doctor for resources. The worst case scenario is that he or she says they don’t know of any!

There are options, you just have to learn to think outside the box!

Found: RSD Lightning Angel’s Fire

Seeing the response to my wall comment – turned into a main wall post, I decided to transfer it over to the blog after a few finishing touches. I found this site when I was newly diagnosed, full of questions and sheer determination to prove the doctors wrong. I was told I may never walk again, if I do it will be limited, and to be content with RSD as it is. Each doctor who told me that they could not or refused to help me in my recovery process added fuel to my fire. My fire was not the typical “RSD fire!” It was that competitive and innocent child like attitude that Disney instilled in me… “If you keep on believing, the dream that you wish will come true.” Regardless of how many people told me “you CAN’T” or “never,” it just pushed me harder to prove to them that I am not a number.

As an admin, I see comments about discouragement and giving up. These comments break my heart over and over. I know how that feels! I decided I don’t want to give up when I am supposed to do so much more with my life! This was the flashpoint to my fire. I wish I could pass that flint or spark on to others when I see a comment reminding me of my own feelings after diagnosis. It takes a lot to remind myself that nothing can be forced, even that fire. I can not help someone who does not want to help themselves. That being said, I want to share with everyone that I hit the biggest speed bump or hurdle in my therapy thus far. It was enough to almost extinguish my raging fire!

The doctor that I trusted, and still do, tells me that the therapy we have been discussing since day 1 is not something that she thinks I need. “You don’t show the outward signs of RSD so I am torn, no color changes, temperature changes, skin and nails are starting to grow again.” “You don’t look or act like a typical RSD patient.” Despite knowing that all of the above is due to my diligence, MY HARD WORK!!! I worked through the pain of desensitization, mobilization and keeping the joint functioning. There were many days of plowing over the brick wall and detonating it with TNT despite my best effort to learn and respect it. I am the one who had so many sleepless pain filled nights. I am the one who is still on medication to increase circulation and decrease nerve excitability. It seemed glaringly obvious why I am not presenting with symptoms, I AM ON MEDICATIONS!

I know in my heart that I am a stone throw from remission, but I need that push to get there and we have not found that yet. The knowledge that I must now go on to find a new doctor, undoubtably one with a wait for new patient appointments, who will not see the “textbook presentation” of my disease to try to continue therapy and treatment. I am scared and stressed and obviously flaring…. My pain is keeping me from sleep (which worsens the problem) and I am still fighting to stand my ground on not taking the opioids for the pain unless I absolutely have to. I am afraid that it will not be a single consult to find a doctor to treat me, but a series of different doctors in order to find one who knows enough to help me.

To sum it all up, I am frustrated that I work my hiney off to control the edema and the outward symptoms and continue to work on increasing range of motion and desensitization, as I was told from day 1 that this will increase my prognosis and chance of remission… and I then get doctors say that I am not a typical RSD patient. It makes me wonder what kind of box they have us in! Are we supposed to curl up in a corner helpless and not try? Is that really how they see us? We are the strongest fighters I have ever met! We make a decision every morning to wake up and FACE THE MONSTER HEAD ON! So if you have noticed my absence lately, I apologize but have not been in a frame of mind to be helpful to anyone until I can address my own demons. I must take care of me to be able to take care of you. I have to get rid of this empty and helpless feeling that has taken over my fire. I just don’t see how I can accomplish this!

In this is another important lesson for everyone, RSD and non-RSD alike! You have to make yourself a priority. Parents, nurturers, nurses and caregivers have the hardest time with this. You must take care of yourself first or you will not be around to take care of others. Both illness (flu and cold) and attitude are very contagious. I know that I had to step back to not risk “infecting” others with my negative feelings. To the same degree, positive energy is just as contagious!! When I saw the wonderful positive feedback on the post, my heart grew like the grinch’s heart! That fire inside started to grow. It reminded me of why I get out of bed each morning and strive to accomplish more! It showed me the incredible bond we have with each other. For all of these things, thank you! One comment stands out in my head without a glance back… Wishing they could offer more than a supportive post. You all are candles who helped me find my fire again. You have inspired me by the positive love. We really are in this together, united!

I want everyone to see that I am just as vulnerable as each person on here. I think I speak not only for myself, but also of similar stories from our other admins on this site… We have our own personal battles. We do not always put out there in the form of the questions. We are not perfect! We are working just as you are to attain our goals! We fight and fight, trying to help others see there is hope and sometimes it is overlooked that we struggle too. Our lives with this monster is not smooth sailing either. It reminds me of an African proverb:
“Smooth seas do not make skillful sailors.”

 

Keep your chin up, allow yourself to go through all of the emotions but know that this too will pass and you will be stronger from the experience you gain!

Posted by RSD Lightning Angel.

The Wall to Protect… Learning Our Limits

July 16, 2013

 

 

Much of the first 6 months following my fracture and diagnosis are a blur. At times, I feel like I was and still am sitting watching the frames of a movie. I think a small subconscious part of me knew early on (before the official diagnosis) that something was wrong with my body’s “pain system.” I had been reassured by my doctor that my pain level should be considered “normal” and not to be concerned. However, quoting Huck on the TV show Scandal, “Pain is the only human process that is completely defined by the person experiencing it.” How could this doctor know how I felt? I never had worn a cast or had the experience of having it cut off. How was I supposed to know that the severe pain I felt when they cut the cast off every 5-6 days was abnormal. The office staff thought I was being over dramatic with a low pain tolerance. This misinterpretation could not have been further from the truth! The amount of medication I needed to comfortably make the car ride to my doctor appointment in addition to walking to the office location included multiple heavy narcotics, anti-nausea, anti-anxiety mediation and Advil. This medication cocktail enabled me to be chauffeured to the doctor, see the doctor, and return straight home without becoming sick with the pain I could still feel.

 

Memories from that first 6 months replay in my mind so vividly that they bring me to tears. The look I saw in my parents eyes continues to haunt me as they tried to help me recover. I felt their frustration at seeing me unable to cope with the pain; they were helpless and unsure of how to comfort me. The fact that I had no idea why I was still in pain lead to my own feelings of helplessness. Any parent can relate! It does not matter if your baby is 2 months old, 10 years old, 30 years old or 50 years old; parents are hardwired to protect their children and fix their problems. By definition the word frustrate means the act of making worthless; to defeat or nullify; to prevent from accomplishing a purpose: Therefore, frustration accurately describes everything we felt. My pain and inability to cope frustrated all of us. We entered into a vicious cycle where I needed someone to support me both emotionally and physically but my parents were frustrated and needed a break from me. I perceived their displayed frustration as my fault. I felt my pain ultimately hurt them which lead to my feelings of guilt.Memories from that first 6 months replay in my mind so vividly that they bring me to tears. The look I saw in my parents eyes continues to haunt me as they tried to help me recover. I felt their frustration at seeing me unable to cope with the pain; they were helpless and unsure of how to comfort me. The fact that I had no idea why I was still in pain lead to my own feelings of helplessness. Any parent can relate! It does not matter if your baby is 2 months old, 10 years old, 30 years old or 50 years old; parents are hardwired to protect their children and fix their problems. By definition the word frustrate means the act of making worthless; to defeat or nullify; to prevent from accomplishing a purpose: Therefore, frustration accurately describes everything we felt. My pain and inability to cope frustrated all of us. We entered into a vicious cycle where I needed someone to support me both emotionally and physically but my parents were frustrated and needed a break from me. I perceived their displayed frustration as my fault. I felt my pain ultimately hurt them which lead to my feelings of guilt.
 

 

Shortly after my diagnosis my mother and I sat in the doctor’s office struggling to understand this monster [RSD] and asking the doctor about the pain. It was explained to us that despite the physical healing of the broken bone, the nerves were still sending and receiving signals saying “ouch, I am injured.” My mother’s response to that fact lead her to conclude that since there was no longer an injury the pain should not exist therefore it would be best to ignore it and push through it until it quit hurting. I found it unbelievable that my mother suggested that I push through this pain thus ignoring my body’s warning system. I remember becoming flustered (I am not sure if it showed outwardly) and started to block out the conversation. The doctor quickly pulled me back to reality when he stated that this pain is VERY REAL! It hurts like any other “real” pain. The body is malfunctioning and creating pain signals without a correlating injury. The messages sent by the nerves cause the body to respond with pain, decreased circulation, color changes, bone thinning, muscle loss, changes to hair and nail growth and changes to skin. In essence my nervous system could be compared to a light switch. With an injury the light switch turns on and the body says ouch. When the injury heals a normal body turns the light switch off making it ready to alert the body to the next injury. After my injury healed my light switch malfunctioned and became stuck in the on position, constantly firing “ouch” signals that the body continues to respond to. The doctor went on to explain that you cannot ignore the pain or push through it, the saying “no pain, no gain” no longer applies to you. I can’t speak for my mom, but after that conversation, her demeanor changed. I am not sure exactly what he said that hit home for her but I felt like he was validating the fact that my pain was real and it now had a diagnosis. I did not need convincing that my pain was real!

Most importantly, the last thing I want to leave the readers with is my doctor’s insistence on maintaining and improving my activity level. I was told that I may never walk like I did before the broken leg. He stressed the importance of the phenomena “if you don’t use it, you lose it.” Your muscles and range of motion needs activity to be maintained otherwise you will lose the muscle mass and flexibility necessary to support an operating limb. He also explained that once you lose any of the aforementioned, it takes 10 times the work and discomfort to regain it again. The doctor further stressed the need to listen to my body. I needed to expect some discomfort with rehabilitation therefore I needed to envision a brick wall. That brick wall would vary with daily stressors and represented my limit for activity that day. I needed to learn to gage how close the wall was and push my activity level to get close to touching that wall without crashing into it. Each time I got close and touched the wall without going through it, I made progress in my rehabilitation. I came to find that if I miscalculated and crashed through the wall I would essentially undo days of progress I had already made. To prevent this from happening the doctor told me it was imperative that I learn to tell the difference between RSD pain and rehabilitation pain. When I felt the RSD pain, I was to stop! Sometimes I would knock down that brick wall without realizing it, my only indication showing hours after surpassing my limits. My indication became a lack of or interrupted sleep due to pain. These episodes have the potential to last for days. It is important to state that during these episodes “Backing off” does not mean complete inactivity it merely means that you allow additional rest time for your body to recover while doing some kind of activity. For me this meant that I shifted from pool exercises to just writing the alphabet in the air with my foot and allowing nap time. My first attempt at exercise and movement began with 3 steps. My wall had been breached. My second attempt came days later with my mom persuading me to get into the pool. I started in neck deep water just moving my foot underwater. I was able to tolerate the pool therapy and progressed from no weight bearing movement in the pool, just moving the leg, to walking in the shallow end. My time spent in the pool went from 15 min a day to 45min a day, what an improvement. I learned how to get in the pool with minimal help and eventually was able to forgo my crutches for short “walks” inside the house from the couch to the dinner table. There were many times I broke that wall into pieces, many sleepless nights and increased pain. Despite the trials, my crutches rest in a corner. If I need them one day, they are on stand by! I don’t anticipate ever picking them back up, but I still have my days when, “oops, I over did it and need to take it easy today.”

Some people may need a different more delicate visualization than my “brick wall.” You may want to picture yourself inside a beautifully colored bubble much like the one Glinda, the good witch from Oz travels in. Just like the wall this protective bubble is not indestructible. If you are too aggressive with your physical therapy, you will pop your bubble! When this happens, it will take time to regenerate it as you recover from your over exertion. No matter which way you visualize your limits, it is important to recognize that with RSD we must listen to our body and challenge it in order to survive! The less we challenge our limits, the more function we will lose. Don’t give up! Don’t settle! Pick an activity that is important to you and push your way to your limit. If you exceed that limit you will know that at least the pain was not in vain because you enjoyed the activity. In the event that you do end up with pain and an “oops, I did too much,” at least you accomplished something that you enjoyed.

 

Focus on heroism instead of terror!

April 20, 2013

 

Reflecting on the recent events around me, I have been close to tears on numerous occasions. We all know life throws us curve balls. With that approaching pitch we are faced with a few options:

 

1. Strike out
2. Catch the ball and throw it back
3. Get hit by the pitch
4. Hit it out of the ball park, Grand slam style as if you are playing in the College World Series in the bottom of the 9th inning of a tied game and going for the championship!

 

These curve balls may take the form of a disagreement between friends/family, losing a job/insurance, the tragedy on 9/11, a diagnosis of a chronic illness, the tragedy and heroism at the Boston marathon and even the explosion in a small town like West, TX. In all of these situations, the key to overcoming each event is united support! The emotional response invoked stems from this overwhelming support of the communities that are involved.

After 9/11, the country came together as one united front to support ALL who were both directly and indirectly affected. At the Boston Red Sox and Yankees baseball game in 2011, Boston honored New York by singing “New York, New York” at the game. More recently, the New York Yankees returned the gesture showing support after the Boston Marathon by singing Red Sox song “Sweet Caroline.” Breaking down barriers between fans of the individual teams is a gesture saying “we stand united and are behind you in this difficult time.” Again, in the world of sports, Americans showed their united support after the situation in Boston. Before the Boston hockey game, during the singing of the National Anthem, the singer lowered the microphone and the crowd sang out in full voices. Seeing video of that National Anthem touches my heart seeing the power in numbers and united support.

If anyone is a college football fan, at the Nebraska Red and White Scrimmage, the pediatric cancer patient Jack Hoffman was given the football and ran it for a touchdown. I would be surprised if anyone missed the touchdown run as it made both local national news! From the day Husker Rex Burkhead met Jack, the Nebraska Cornhusker player treated Jack as if it was his little brother. The bond the team developed with this young boy echoed through out the Nebraska community, spreading across America and even around the world. Team Jack has shirts supporting the Huskers and Team Jack sprinkled around the world as evidenced by the many messages and pictures on his Facebook page. It is breathtaking seeing how a community united can make a difference, not only in the Hoffman’s life but also the lives of people around the world who have been inspired by the strength of this united front.

Finally, seeing a community like West, TX come together to support each other is touching. The firemen in this community are volunteer firemen and people who were evacuated returned after taking their children to safety in order to help those still in the danger zone. This community is so close that they don’t even think twice about risking their own life to save their neighbor. Having been to West on many occasions, I can say without a doubt that the people here are some of the most polite and caring people I have had contact with. Fire Departments from surrounding communities responded with other Emergency Personnel to assist. One more example that when we unite in our battle, we are stronger!

I hope that the RSD/CRPS community can reflect on the events of the past to see that if we look past our differences, we can overcome even the worst tragedies. My wish is that we, the RSD/CRPS community, don’t need to have a tragic event to pull us all together as a united front. We can accomplish anything if we work together.

 

Unity: RSD Puzzle

Unity within the RSD community

Just like the previous blog post, this is about unity. While perusing the internet support groups, I become increasingly aware of the dissonance between members. I see posts by members that resemble a childhood playground battle! “My pain is worse than YOUR pain!” Or like the boys in high school sizing each other up in the locker room. “I could take him any day!”

 

henry ford quote puzzle

Coming together is a beginning.

  Keeping together is progress.

  Working together is success.”

~Henry Ford

 

Alone we can do so little;

 together we can do so much.

~Hellen Keller

In my humble opinion, WHO CARES?!?!?!?!? A pain scale is subjective information. When medical staff holds out that card to rate your pain, they ask where YOU rate your pain. Explaining 0 is no pain at all while 10 is the most intolerable pain imaginable. We (the patients) rate our pain based on our previous experiences with pain. I can tell you with 100% certainty that before RSD, my definition of an 8 is probably what I consider a 2 now. It is also impossible to compare my pain to your pain or anyone else’s pain. The pain scale is subjective. According to the dictionary the definition of subjective is 1. existing in the mind; belonging to the thinking subject rather than to the object of thought. Let’s make this clear; the pain is a real and the scale on which we rate that pain is what is subjective. Therefore, the ratings are based on the memories of the person rating it. Regardless, if my pain rating is 10 your rating may give that same level of pain a 5 on your scale. For a person to rate their pain a 10 means that they are coping the same as anyone else rating their pain at 10 (in each instance these people feel that it is their worst imaginable pain). Most importantly, standing together to help each other cope with pain remains our goal in the RSD community! Stand by each other in unity!

Additionally, people post complaints about not getting support from other RSDers. I see harsh words exchanged complaining that some people are not carrying their own weight! As we all know, RSD affects the body’s ability to cope. I find it hard to understand how a fellow RSDer can accuse others of not “pulling their weight” or “moaning and whining and not being willing to do anything about it.” How can someone who experiences the extreme fatigue and pain throw accusations about others with no regard for what is happening in their life. Malicious words fly without the author even trying to put themselves in or even understand the situation of the fellow support group member, forgetting that this person too is afflicted with this monster! The support groups are there for that reason, SUPPORT. This malicious behavior tears members of different groups apart. We all have an illness, experience pain and isolation and try to cope with new limitations. We are the support and the ones who understand and commiserate. There are no excuses that condone treating your fellow RSDer badly. I will not give any more attention to these 2 year old temper tantrums!

The entire RSD community needs UNITY. There should be no concern of who gets credit. There should be no preference of where we start or who to start with. The united community needs to begin educating. Educate ANYONE who is willing to listen. Don’t waste your time on people who are ignorant and not willing to be open to the possibility of learning something new. Utilize your energy educating people both in the medical field as well as people you meet in everyday life. Surprisingly, this key person will take the information you give to inform masses of people you never imagined possible. If we selflessly educate for the right reasons, we will succeed! Let’s put away ulterior motives; educate everyone, we cannot exclude certain populations because that takes away from our united front. This means we need to educate about men, women, adults, children, every ethnicity, military and non-military. In the end, the information will get out to the people. WHY SHOULD ANYONE SUFFER! WOULD YOU REALLY WISH THE PAIN TO PERSIST IN ANYONE?!?!?

We all have our individual demons, trials and weaknesses. However, we also each have a strength! RSDers in unitt can use our strengths to further the cause. We will keep our individuality but still unite as one body! It is possible! Let’s show the world!

The Superhero Within

April 13, 2013

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“You were given this life because you are strong enough to live it.”This is one of those Facebook picture and quote combos that not only caught my eye because of the thunderstorm cloud behind it, but also because it resonates with RSD/CRPS survivors! The billowing cloud in the ominous sky as it approaches can be an awe inspiring sight possibly triggering fear for some people in its path. Thunderstorms, well known for their power and strength to overpower anything in its path, are both beautiful and intimidating. This raw power has the potential to devastate all in its path. This metaphor should inspire you to show the unbridled strength residing within all that you do, not to “steam roll” over those people who cross your path. Harness the strength from deep within, helping you see that ANYTHING you put your mind to can be accomplished. We need to remember that when removing the “im” from the word impossible you are left with possible. By changing the way you look at the word you open yourself up to endless possibilities, all of which are attainable.

A wise person once told me “What doesn’t kill you makes you stronger. Well if that’s the case, we [RSDers] must all be superheroes by now… Right?” Who is your superhero? Now is the time to channel that inner super power that we all possess, regardless of which super power it is! Use that channeled power to overcome our daily struggles and incorporate pieces of our “pre-RSD” life into our “new” life. This incorporation will be an ongoing process forever changing. Learning early in your diagnosis how to “roll with the punches” and get back up and try again is an integral part of coping. Remember, the only person who has never failed at anything is the person who has not tried. Do not allow yourself to be a person afraid to live or reluctant to try because of an unrelenting fear of failure. People who suffer with RSD need to be cognizant of their limitations; strive to live a full life and know your limits when trying something new. Show your strength and be an inspiration to others as you shine like a bright beacon of light. Remind the people around you that they too have the light somewhere within themselves! They will see that they have the ability to harness their inner superhero, RSD or not. The potential of your individual reach is endless. Start now! Inspire others! Make a difference! Find the purpose in your life again! We are all here for a reason, we may not understand it yet but it will be revealed when the time is right! Shine bright and inspire everyone who comes into your life!

Posted by RSD Lightning Angel.

Pain and memories: One Year with RSD/CRPS

April 3, 2013

Consequences of pain: One year on

Today is 1 year since I fell. 1 year from the bad decision that changed my life forever. I wonder what my life would have been like. I wonder if this helped me grow or if I just made lemonade out of lemons. I wonder if this really happened for a reason. I wonder if I am walking the right path.The next 6 months are filled with memories of 1 year ago to the day. Last year at this time was the beginning of a period I remember only pieces of. For the next 6 months, thinking back will only bring thoughts of severe unrelenting pain! The memories of being called a prima dona! The feelings of isolation and no one in the world understanding what I felt. Memories of my personal hell! Memories of being called crazy! I was called a drug seeker solely based on my home medication list.

My mother was my advocate, without her I would have had zero pain relief. Granted, pain relief is a relative term. I was on tons of medications! Regardless of the meds, I did not sleep more than 30 min to an hour or two at a time. There was no difference from night to day. I lived on the couch. The trek to the bathroom was one that I contemplated “Do I really have to go THAT bad?” The 25 feet to the bathroom was enough to put me in tears, unable to breathe from pain! In the short times I was asleep, my parents tell me I was crying, moaning or whimpering in my sleep. I was assured that this pain was totally normal and expected. I was not able to sleep!

I did not get a diagnosis or a reason for my pain until May when we thought it was from the blood clots. However, the pain did not let up after those were treated. I was unable to do any weight bearing. I went through “physical torture” and failed to progress which led to my diagnosis with the MRI. Even after the stated “rare diagnosis,” I was unable to find doctors to treat me. My 6 months of HELL continued well into August and September when I made the decision that despite what doctors say, I WILL walk again! I WILL surf! I WILL skydive! I WILL rollerblade! Most importantly, I will prove that I am not a number or statistic… I AM ME! I am not saying that this time was easier, but I will say that it was at this time that I decided that I AM TAKING CONTROL BACK!

So today, I am unsure how to feel about my 1 year birthday of my “new life.” What I do know is that I will continue to fight! I will continue to raise awareness! I will continue to LIVE. RSD will always be a part of me…. but that is all! I maintain control!

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