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.