Letter to My Family and Friends

          Yes, good morning, afternoon or night which ever it is when you see this page.
        This letter is for all my friends and family describing what RSD is so that you can understand and appreciate how this has affected me. I hope that this will give you some understanding about why it is hard for me to do certain things. I am not trying to be a complainer, but some days it is very difficult to function with so much pain in my feet. Most of what you will read in this letter is from the following website.
         “Reflex sympathetic dystrophy (RSD) is a complex, poorly understood disorder that is characterized by chronic, severe pain and progressive changes in skin, muscle, and bone. Although the precise causes of RSD are unknown, it often occurs following an injury, often minor in nature. Some experts believe that RSD represents an exaggerated response of the sympathetic nervous system to some form of injury or insult (eg. surgery) to the area resulting in chronic, severe, sometimes debilitating pain. Although the signs and symptoms of RSD vary depending upon the clinical stage of the disorder, the one common feature shared by all 3 clinical stages (early, established, or late RSD) is pain.”
        Because currently there is no cure for RSD, the goals of treatment include: 1) controlling and minimizing pain to the greatest extent possible; 2) restoring function to the RSD-affected limb; 3) preventing progression of the disease process to the late stage; and 4) improving the patient's quality of life and psychosocial functioning. (http://www.medifocus.com/guide_detail.asp?gid=NR015&a=a&assoc=
Google&keyword=RSD)

        Having RSD means many things have had to change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident most people do not know even a little about RSD and of those who think they do, many are actually misinformed.
        In the spirit of informing those who wish to understand these are the things I would like you to understand about me before you judge me:

• Please understand that being in pain does not mean that I am not still a human being. I have to spend most of my days in incredible pain and exhaustion and if you visit I probably do not seem like much fun to be with. Nevertheless, I am still me stuck inside this body. I still worry about school, work, my family, friends, and most of the time I would still like to hear you talk about yours too.
  
  
• Please understand the difference between "happy" and "healthy". When you have the flu, you probably feel miserable with it, but I have been in pain for years. I cannot be miserable all the time and, in fact, I work hard at not being miserable. Therefore, if you are talking to me and I sound happy, it means I am happy. Not that I’m in a lot of pain, or extremely tired, or that I am getting better or any of those things, but for the moment I have it under control at that time so Please don't say "oh, you sound better!" I am not sounding better. I am trying to live with it. If you want to comment on that, you are welcome to do so.
  
  
• Please understand that being able to stand up for 10 minutes does not necessarily mean that I can stand for 20 minutes or an hour. Moreover, just because I managed to stand up for 30 minutes yesterday does not mean I can do the same today. With many diseases you are either paralyzed or you can move: with this one it gets more confusing. (Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on it applies to everything.)

That is what RSD does to me.

• Please understand that RSD is variable. It is quite possible (for me its common) that one day I will be able to walk to the park and back, whiles the next I will have trouble getting to the kitchen. Please do not attack me when I am hurting by saying "but you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens, please do not take it personally.
  
  
• Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need to lose weight, get to the YMCA, may frustrate me to tears and is NOT correct. I am working with my doctor and a physical therapist and am already doing the diet and exercise I am supposed to do. Another statement that hurts is "you just need to push yourself more, work harder" RSD includes nerves and circulation, and our bodies don't repair themselves the way yours do; pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.
  
  
• Please understand that RSD may cause depression (you would get depressed too if you were hurting for months and years on end), but it is NOT created by depression. Being bio-polar is one thing but this is a whole lot worse it is hard to get anyone to help you, because some peoples think this is in our head and you are right it is, The nerves for this is in our brain and our brain is in our head.
  
  
• Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it cannot be put off or forgotten just because I am out for the day or for that matter whatever I happen to be doing. RSD does not forgive.
  
  
• Please understand that I do not want you to suggest a cure to me. It is not because I do not appreciate the thought and it is not because I do not want to get well. If there were something that cured, or even helped, all people with RSD we would know about it. This is not a drug company conspiracy; there is world wide networking (both on and off the Internet) among people with RSD, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please do not expect me to rush right out and try it. I will take what you say and discuss it with my doctor. In addition, I am in contact with other people that have RSD, I will be sure to pass it along to them too.

          In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist. You are my link to the outside world. I do not want to a shut-in, but on some days it hard for me to walk and/or wear shoes. If you much know the shoes that I can wear are a pair of pink bedroom slippers., and on a good day if my feet or leg are not swelling I have a pair of men shoes to wear outside this doesn’t last long maybe one or two hours and I need to take off my shoes. If you would like more information please go to some of the links on my website and please look at the pictures of my beautiful, but painfully swollen and red feet and legs...

          So please pray with me and keep me emailing or writing to me.

          Thank you all my love, Cyndi H
          If you have any questions please email me at cyndi@the-heringer-family.com

Thanks Cyndi

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