Be your Own Advocate- Don’t Give Up!

This is an article that I found online….I copied it for you here & I hope it helps people understand What those of Us with RSD/CRPS May go through! I am one of the “lucky” ones because this hasn’t happened to me much at all! I had an Immunologist say to me “sooo what’s RDS?”….My husband & I looked at each other…got up & walked out! I had one Rheumatologist say to me “well, I cannot confirm or deny your other Dr’s diagnosis of CRPSII, Because I see no evidence of it today!”…. Well he must’ve been blind because I could see and feel it AND I showed him photos of flares..Again we walked out, but not without telling him first, that I was not there to ask for confirmation of my full body RSD/CRPS! I had confirmation from 3 Dr’s already at that point! Everyone else, as far as medical professionals, have been kind and knowledgeable with regards to my illness! But as my friend and co-CRPS’er, Barby Ingle writes in her book “The Pain Code”..”Healing starts from within”….she talks of hope being a big part of dealing with pain issues! Here is the article that I found at

Complex Regional Pain Syndrome, CRPS has been called the invisible disease – and for a few very good reasons. Although there are some who are more severely debilitated by this disorder, there are many patients who suffer horrific, agonizing pain each and every day without any obvious outward sign of disability. There may be no wheelchairs or crutches, no big casts or bloody gashes to define the pain for the untrained eye which may otherwise easily miss a slight limp or a red swollen arm resting snugly against a protective body. In addition, many with CRPS often manage to function on a daily basis by going to school, work and participating in social outings whenever possible; all with a level of heightened pain that would knock the rest of us off our feet – helpless in bed. They actually smile when with a friend and carry on normal conversation as if nothing is wrong. The only way I can explain this is to say that when living with this level of excruciating pain twenty-four hours a day, every day, months after month, year after year the human spirit prevails. I watched my son find ways try to continue functioning, if at all humanly possible, with friendships and social outings, even school. He desperately wanted his life back and he learned that it was advantageous to add normalcy to his routine if he was able, despite having to cope with surviving this living hell.

It is possible then, to see someone suffering from this invisible disease walking down the street, attending school, smiling and talking with their friends and for you to think there is nothing wrong. It makes it even trickier with children, who have an even easier time smiling, having pleasant conversation or having fun with their friends while in a state of long term chronic and horrendous pain. Physicians are so stuck on the universal Pain Scale (designed for the adult population) which correlates terrible pain with grimacing, crying, screaming and sadness…that when a child walks into their office, and carries on a pleasant conversation – perhaps even sharing a smile or two; there is no way they can believe that this same child is suffering from intractable pain at 7 out of 10 on a pain scale. This is obviously a malingerer and very quickly a diagnosis is made, “psychosomatic!”

Lastly, it is important to note that CRPS is one of the few illnesses for which there is virtually no reliable diagnostic test. Complex Regional Pain Syndrome often starts from a minor injury or surgery, but that injury is usually long gone and well healed by the time the CRPS has set in. With Complex Regional Pain Syndrome, EMG’s, MRI’s, CAT scans, and X-rays are typically all negative. (Occasionally bone scans will reveal decreased bone density and this can help with a diagnosis). Because of this many physicians, with limited knowledge about CRPS, assume there is nothing physically wrong with the patient because testing keeps coming back negative. It is very common, at this point, for doctors to begin wondering if there is a psychosomatic component to the pain.

A couple of things come to mind when I think about this dilemma. First of all there is the obvious need for more awareness about Complex Regional Pain Syndrome amongst health care professionals and physicians world wide so that the signs and symptoms of this devastating disease can be more easily recognized. Second, although I understand how a physician must always keep his or her mind open to the possibility of psychological issues interfering when making an accurate diagnosis, I also feel strongly that it should never be assumed that a patient’s pain is not real. If a person is telling you they are in pain… they are usually in pain. I would hope that physicians would begin with this premise, stick with this premise and believe in their patients unless proven otherwise – lack of diagnostic testing does not prove otherwise. Fortunately there are many wonderful doctors out there who will go to the ends of the earth to help their patients (we were fortunate to have found a couple and I am extremely grateful for their care), but there are also far too many who somehow feel that there is an epidemic of psychiatric issues amongst their patients and pain is most definitely just the secondary symptom. These physicians often place a psychiatric label on the patient before an evaluation is even complete, causing unnecessary increased stress and suffering on the patient and family; not to mention months sometimes years of precious lost time.

There is a term for this in the medical profession called “cubby holing”. Sometimes physicians fall into the trap of categorizing patients into groups and basically place them into pre-set “cubbies” with pre-determined judgments. When my son Devin was being evaluated by one particular pain specialist, he quickly placed Devin into a nice little “cubby”- a young teen who must have too much stress at school and home, most likely problems with friendships and siblings and a need for secondary gain. He even insinuated that my husband and I must be having marital problems which was causing additional stress. Thus, I had fallen into a “cubby” of my own. It floored me at the time, for Devin had two adoring siblings, loads of friends, no stress at school and two parents who love each other very much. No matter how many times I tried to tell the doctor this reality, he kept saying, “Wendy, this is what all moms say to me”. Troubling to say the least, but a great example of a doctor who used “cubby holing”, perhaps without realizing it, to make nice, tidy pre-determined judgement about my son and I, leading to his pre-determined conclusion that Devin’s pain was psychosomatic.

So what does one do about this situation? How do you avoid being cast from one physician to the next being told, “Your pain isn’t real…Its all in your head.” My best advice is to trust your instincts. You know yourself and your child better than any physician who is just meeting you or your child for the first time. Move on immediately and find a physician who will work with you and help you find the right treatment for you or your child’s CRPS. Don’t get sucked into staying with a physician or health care worker who does not believe in you. There are good physicians out there and there are people who can help.

If you are having a hard time locating a physician or program in your area contact the Reflex Sympathetic Dystrophy Syndrome Association, RSDSA. Parents with children with CRPS, I strongly encourage you to contact The Children’s Hospital of Philadelphia’s Amplified Muskuloskeletal Pain Syndrome (AMPS) Program run by Dr. David Sherry.

Chronic Pain..What Is It To ME?


Having chronic pain means many things change, and a lot of them are
invisible. Unlike having cancer or being hurt in an accident, Most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are the
things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit, Some times I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about
yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please
don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping.I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t
necessarily mean that I can stand up for twenty minutes, or an hour. Just
because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute.
That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”,
“thinking”, “concentrating”, “being sociable” and so on, it applies to
everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for
many, it’s common) that one day I am able to walk to the park and back,
while the next day I’ll have trouble getting to the next room. Please don’t
attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I
can.In a similar vein, I may need to cancel a previous commitment at the
last minute. If this happens, please do not take it personally. If you are
able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me
feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would?I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, “You just need to push yourself more, try
harder”. Obviously, chronic pain can deal with the whole body, or be
localized to specific areas.Some! times participating in a single activity
for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed,
or take these pills now, that probably means that I do have to do it right
now, it can’t be put off or forgotten just because I’m somewhere, or I’m
right in the middle of doing something. Chronic pain does not forgive,nor
does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t
appreciate the thought, and it’s not because I don’t want to get well. Lord
knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can
involve side effects or allergic reactions, as is the case with herbal
remedies.It also includes failure, which in and of itself can make me feel
even lower.If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot.
Chronic pain is hard for you to understand unless you have had it.It wreaks havoc on the body and the mind.
It is exhausting and exasperating. Almost all the time, I know that I am
doing my best to cope with this, and live my life to the best of my ability.
I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.

From the Writings Of Bek Oberin


Please come and see the newspaper article about me being chosen as a finalist by WEGO HEALTH, as a WEGO HEALTH ACTIVIST “UNSUNG HERO”!!

The newspaper reporter and photographer came to my home and they stayed a couple of hours and we had such a great chat! This has been such a great experience for me, and whether I win on Thursday, March 28th, 2013 or not, I feel like a winner! It has been an International contest and there were about 100 people chosen and down to 7 now for finalists. I am one of those 7 finalists’ and I will find out the results tomorrow!  Here is the link to see the article and if you have trouble, then you can scroll down the right side of my blog and go to the link I put there instead!  I hope you enjoy it! Thank you so much!

RSD/CRPS awareness
RSD/CRPS awareness

image    check out the newspaper article by clicking on the link after the cross photo….

also….***PLEASE ALSO CHECK OUT MY FEATURE VIDEO FOR “Invisible Disabilities Association” .clickhere :

RSD Awareness/Support
RSD Awareness/Support
I made it as a finalist and WEGO HEALTH sent me a "Party packet" to celebrate
I made it as a finalist and WEGO HEALTH sent me a “Party packet” to celebrate

You ‘N Me And A Cuppa Tea

You ‘N Me And A Cuppa Tea.

This is my “other” blog….about the life of an “empty Nester”…..and a long life of Abuse and bad experiences; but how those things will NOT stop me from Loving, Living & Hoping! This blog is a “Private” blog now, out of respect for my family. But if you wish to read it, please contact me and I can add you to the “private blog readers list”.  Thank you…