The 18th Anniversary of my RSD

Every person I get to educate about RSD brings us one step closer to better treatments, more remissions and a possible cure.

Every August I work through the stages of grief.  Denial, anger, bargaining, depression, and finally acceptance are all my familiar friends this month.  August marks the time when my life changed drastically.  There was a critical moment when my life went from ordinary to difficult.  I wish that moment had a bigger bang to it, something that I can say "AHA! If only something happened differently."  Instead I have an event that was so common that there is nothing that I could have changed.  Still, the moment had a painful impact as it changed the course of my life.  Denial for me is the fact that I deny the severity of life with RSD.  My anger is directed at how extreme this pain affects my life.  I bargain that I can live with my pain as long as I don't need any more surgeries. Depression comes when I understand that trying to live the lifestyle I want costs my health, sometimes I simply want to play on the floor with my kids without caring that it will cause pain.  At the end of every August I once again find acceptance.  This is my life and I can choose to live it the best way possible.  August is a month of strong emotions and emotional stress.  Grief is not just for those who loose someone they love.  When you loose out on the ability to live a pain free life you are loosing an important piece of yourself.  You loose opportunities.  You loose friends.  The simplest tasks are painful to accomplish.  Yet you cannot give up. 

I remember that day with sadness, the day my life changed forever.  I was 17 years old working at a fast food place, cleaning the tables while watching the clock for the end of my shift.  I wanted to get home, shower and change.  My best friend was already at the house with my sister and we were going to be meeting up with some guys later that night.  In a few weeks school would start and I would be a Junior.  Just that summer I began to realize I wanted more in life. I was finally going to take school seriously, no more just getting by because I wanted to go to college.  I wanted to study literature and psychology with the hopes of becoming a child psychologist.   
I looked up at the clock, ten minutes till the end of my shift.  Casually wiping down tables the place was empty so I was trying to draw this last chore out not wanting to start something else with just a few minutes left.  I took a step to move to the next table and pain shot through my right knee.  I stood still, shocked and puzzled.  I didn't bang my knee and I don't think I twisted it.  Why does it hurt like this?  I remember taking a deep breath and trying to walk, number one rule my Dad taught me was to try and walk it off.  Just putting weight on my leg hurt and I couldn't seem to walk without limping.  I looked around and didn't see anyone.  No one was there to help.  I sat down and tried flexing my leg, bending and unbending it but even this proved painful.  Why am I in so much pain?  I stood up and decided to fight through it.  I needed to finish cleaning up the dining area and I now only have 5 minutes left on my shift.  I limped through the last few tables.  The manager came out and saw my limping.  I told her I wasn't sure what happened but I guess I twisted my knee.  I clocked out and limped to my car.  Sitting there I took a few minutes to try and figure out how I twisted my knee.  I replayed the moments before the pain started but I couldn't put it together.  Then I realized the new dilemma, my car was an old stick shift.  I could barely place weight on my right leg, how the heck was I supposed to drive home?  This was back before everyone had cell phones.  I didn't want to go back inside and use the phone.  I didn't want to make a big deal out of this especially since I didn't know how I hurt my leg.  I summoned the strength to drive home by reminding myself that it was only about 5 blocks. 
By the time I reached home I forgot about the plans we had for the night.  I was in a sour mood and I wanted my Daddy.  I went in the house and straight to my Dad.  He fixed me up on the couch.  Propped my now swollen knee up on pillows, motrin for the pain and ice to help reduce the swelling.  Then he wrapped my knee in an ace bandage.  Two days later my knee was still hurting and I was limping everywhere.  We went to my family doctor who sent me for x-rays that came back negative for injuries.  My doctor agreed that it must be a soft tissue injury so I should stay off of it for another week.  After a few more weeks and the pain not getting any better we were refered to an Orthopedic Specialist.  If memory serves correctly it took some time to get in to see the doctor.  Then when I finally was able to see the doctor he gave me a patella brace (it has a circle cut out for the knee cap and is a tight fitting brace) he prescribed me with extra strength motrin and sent me for a battery of tests.  The patella brace was painful on my leg, my knee would swell up and around the brace causing even more pain.  I remember one time when the doctor wouldn't excuse me from gym class.  My leg was in so much pain and was so swollen that the other girls in the locker room ran to get my sister to help.  My knee actually swelled up over the sides of the brace and the circle piece where my knee cap was looked like it was raised more than an inch out of that space.  My sister and one other girl pried the brace off my knee and then helped me walk to the nurses office so I could go home.

 When I went back to the specialist to hear the results of the tests he looked me in the eye and said "There is nothing wrong with you.  You can continue to take the motrin but you will be in pain until you realize you are not in pain anymore."  I was 17years old.  I didn't understand what the doctor meant as clearly I was in pain and anyone could see the swelling in my leg. 

About a week later I was in the van with my Dad.  I was still using the crutches to help me walk but I had stopped using the painful patella brace.  This is when he had the talk with me.  "You know, if you are still hurting we can take you for a second opinion.  Our insurance will let us get one second opinion.  Not all doctors know everything so if you are serious about how much pain you are in I can tell your Mom to take you for a second opinion."  I remember this moment so clearly.  I didn't know what to say except. "It really does hurt Daddy.  It hurts a lot."  It was agreed that we would go for a second opinion and whatever that doctor said we would go with.  To get the second opinion my Mom needed to take me in to see our family doctor and he needed to fill out a referral.  After a few weeks I was able to get in to see the new Orthopedic Specialist.  He switched me from the painful patella brace to an immobilizer.  An immobilizer is a full leg brace that keeps your leg straight.  As much as it was painful for the brace to be touching my leg it was so much easier than the patella brace.  Being that it kept my leg straight it was easier to apply some weight to my leg, not much but a hobble was now easier on the crutches.  This doctor sent me for more tests, xrays and bone scans.  To be honest he also had a more gentle hand with me than the first specialist, his goal was to get me out of pain.

After we did all the tests we went back for our follow up appointment.  This was the moment of truth.  Depending on what he said everyone would suddenly begin believing that I was truly in a lot of pain.  I was nervous.  I remember that when my Mom and I walked into the office the receptionist was on the phone so we sat down and waited.  When my Mom walked up to the window the receptionist informed her that the doctor was running late but asked if we could please wait for him, he cancelled all his other appointments but was hoping he could still meet with us.  He was coming straight from the airport after being in Florida for a seminar.  I think about an hour went by but maybe that is just how long it felt sitting there waiting. 

Finally we were taken back into an exam room.  I sat on the bed trying to get my leg into a more comfortable position.  I admit that most of what he said is a blur.  What I do remember is when he said "I think I know what is wrong with your leg but I do not know enough to diagnose it."  "I believe you ARE in a lot of pain."  It was at that moment I became foggy, someone finally believed me!  I know he began explaining a lot of different things to my Mom.  RSD or some call it CRPS and how it stands for Reflex Sympathetic Dystrophy.  I remember hearing him explain that no one in the area treated it so I would have to travel to either Philadelphia or New York City to see a Pain Management Specialist.  I know he tried explaining how the pain syndrome works but all I kept hearing was "He believes me."  The seminar he was at was actually about this syndrome, he was just now learning about this pain disorder. 

18 years is a long time.   I have had the privilege to witness the growth in the medical community in it's knowledge about RSD.  During one of my too many blocks an intern informed me that RSD was a two sentence blurb in their medical school education the only way to learn more about it was to find a doctor who treated it and work with them.  I remember a time when the Medical Dictionaries, WebMD, and Mayoclinic.com didn't even list RSD.  When the only website was the RSDHope.org created by the Orsini Family dedicated to finding answers because their son Keith has RSD.  Now if you Google Reflex Sympathetic Dystrophy you can get about 752,000 results!  There have also been more advancements in treatment methods. However none of them are ideal as the best course of action is to get quick and aggressive treatment at the onset of the disease. 

August 13th is my RSD Anniversary.  This year marks the 18 years I have lived with pain.  That is half my life.  It is a time when I grieve and reflect on how much I have had to over come just to live life.  I am always complemented on the fact that most people cannot tell how much pain I am in.  Unfortunately this can be misleading as to the severity of RSD.  In the last 18 years I have had 100 blocks, 2 separate week long hospital stays for catheterizations of blocks, 7 spinal cord stimulator surgeries, about 3 laminectomies, TENS units, I have taken nerve medications, pain pills, NSAID's, muscle relaxors, Percocet, Fentanyl, and Lidoderm/Flector patches all of this to help reduce my pain levels.  I have gone through all of this and while it has helped reduce my pain levels I cannot ever begin to count the amount of days I am in pain.  Still today the pain can be severe enough that I need to use a cane to walk.  In fact a physical therapist strongly urged me to use a walker instead of a cane to help me maintain proper balance when walking during a flair.  I am constantly researching pain treatments looking for the one that could possibly put an end to this pain cycle.  Until that day comes I will continue to fight.  I will continue to live the best life possible and be thankful for the life I have been given.  Despite my numerous treatments and days of pain I have been blessed with a beautiful family.  I will lean on my family and friends to help me get through yet another year of pain. 

This is why support is so important for the RSD Fighter.  "He believes me!"  It is a powerful thought that helps so many of us.  Your belief that what we say is true about our pain.  While I finally had the belief of a Medical Doctor and my family I still had others in my life who doubted.  I remember my algebra teacher who confronted me one day after I was diagnosed but not yet receiving treatments.  I had a hallpass to allow me to leave classes early so I could walk on my crutches through the empty hallways without fear of being bumped into.  This one day as I walked into her empty classroom early she questioned me "You said they call it RSD which stands for Reflex Sympathetic Dystrophy Syndrome?"  I said "yes."  She looked at me and said "That's odd.  Last night I tried looking it up in the medical dictionary and I tried to do an internet search for it but I couldn't find anything on it."  I tried explaining to her what my doctors from Temple University Hospital told us when we asked the same question of him.  She nodded her head and said "That's very odd that there is no real information about it anywhere."  She was right, it is odd that back then you couldn't even get a pamphlet to explain the diagnosis but as my teacher she was wrong for doubting me and my doctors. She treated me differently, as if I was milking the system.  I had others in my life who also doubted, some friends and some family.  I still have people in my life who doubt the severity of the pain disorder.  I cannot help but imagine they would believe me and be more empathetic if I had any other various well known medical disorders. 

Every August I submerge myself in my family.  They are my life line.  Each August proves I have fought through another year with RSD but as each August passes I realize that my fight is one for a lifetime.  I pray that someday we could find a treatment that can place RSD into remission.  I pray that there will come a time where I do not need to be prepared for a flair.  I believe in the power of prayer.  I also believe in myself and that I will never let pain make me loose the life I have built around it.  If I could only make a difference in one persons life then maybe this is all worth it.

If you have taken the time to read this post and if you have read my other posts Thank You!  You have taken a step in helping us reach our goals.  You are a member of my support system simply by reading and becoming aware.  If in your future you speak with someone who struggles with pain and they say "You probably haven't heard of this but it's called RSD." You now can say "Actually I have heard about that and it is a very painful disease.  I'm sorry."  On that day you will have made a difference in someone else's life.  I like to think that small measures such as that can go a long way in helping others.  After all I have had the privilege to talk to others with RSD and learn that their path to diagnosis was quick.  More Pain Management Centers are available as more doctors work with the specialty of Pain Management.  These same doctors have been working hard to find the best course of treatment for their patients and have been on the cutting edge of medicine.  Years ago we read about Coma Treatments being done in Germany and Mexico but have now been revised into safer treatments used here in the USA by a select few doctors.  More and more doctors are stepping up and saying that it is not okay for people to live in a constant state of pain.  More RSD/CRPS patients are stepping up and saying "Believe me when I say I hurt and I want to be pain free!" 

Obviously this is not a HAPPY ANNIVERSARY type of day.  I believe it is similar to the anniversary of the death of a loved one.  After all, it is the death of a life once lived but it is also the birth of a new life even if it is a life filled with pain.  I recently read an article that posed this question "When life gets hard are you going to become like the carrot, the egg or the coffee?"  At first I let my pain make me into the carrot but then as time went by I became more like the egg.  After a few years I realized I could be more like the coffee.  RSD will change you but you can choose how it will change you.  I choose to let it make me into something strong and rich.  I use my anniversary as a time of reflection.  I will grieve over the loss of what was and could have been.  Then I will reaffirm my strength and continue this battle.  I will gather my strength from those who "Believe Me".