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

Come and Follow ME

Follow Me On Twitter!
Follow Me On Twitter!

***if you’d like to follow me on Twitter, just request and tell me who you are. I will add you to my “protected” Tweets! My Twitter name is: @Suzy_Stewart….but my public Twitter is: @jewelrymkr if you would like to follow me.

One Little Kitty….

Needless to say, if you’ve been reading along with this blog; you’ll recognize that I’ve been through a lot. Yes, I know that everyone has been through tough times. I also realize that your own “worst” is something that you own ! Your worst situations are horrible for you and everyone has a right to feel that to them… It is their worst! I guess I just feel, as do my Dr’s & as do the disability agents; that I have had just a bit more than my own “fair share” of nightmare-ish experiences! Now I’m not looking for “poor me’s” or sympathy…but any kindness and /or empathy I will take wherever and whenever I can get it! Mostly because I really and truly have had it past my limit of mean & abusive people around me in my life.
I don’t always write about abusive and/or horrible experiences. I love also writing about certain CAUSES and things I love or feel passionate about!
Today I couldn’t wait to tell you about my lovely “feline princess” and our newest family member, “Luna Skye”! She is our rescued, domestic short hair, all white Kitty Cat! Before Luna came to live with us a couple of monthsr ago, I was much more sad & depressed about so many things that continue to happen to me in this experience called “life”!!
Luna had been rescued by the Humane Society. She’d lived in bad conditions of a hoarders’ house! The person or people hoarded animals! I’m not sure if they had dogs and cats, or just many many cats! She’d just given birth to two snowy white kittens also! My Luna was very skinny at less than 6 lbs at 21/2 years old! They had her and her babies go into a foster home! Luckily, due to the time it was going to take to go through litigation and put those animal abusers into jail, Luna and her kittens got to stay together longer than usual. They were in a home with a family. There were two other cats, I believe; and a dog or two! They all got along well and of all the coincidences, her foster mom’s name was also Suzanne!
Luna, who was “Cora” at their house; was an elegant and affectionate cat, and that she is still! I wish I knew more of her past because she’s very skittish and seems to be fearful and fretful. She’s been slowly learning our ways and about life in our home. The home that will now always be hers too!
The best thing is that Ive been able to be a part of trying to calm this sweet girl and show her a ton of love, patience and perseverance! I think the perseverance is mainly on my/our part! We cannot & will not ever give up on her, she truly needs us!
I had read a Cat story about an abused cat who came to live with this man in his home. That kitty wouldn’t sit near “his new person”. She wouldn’t snuggle or cuddle, but she was a beautiful and lovely cat! That man didn’t give up, and a year later, when he was at his desk top computer one day, his Cat jumped up and onto his lap! She’s been there every day since then, while he does his work!
So when Luna came to us, I first called her “Cora -Luna” to get her slowly used to her new name ! She started coming to “Luna” within a week I’d say! Now she’s our “Luna” as she will be today and forever! We’re both very attached to her now as she appears to be to us as well.
Ha ha.. My hubby has also fallen in love with Luna. He ‘s never been afraid to show his emotions, but Ive not seen him “take” to a cat like this before! He’s the one that tells me not to let her to do this or that or not to allow her on the bed etc..Well… Guess where Luna sleeps quite often now? You guessed it… On our bed…and right on or quite close to my pillow! She also did something that prompted me to write this story today! After reading about that guys cat that wouldn’t sit with him or on his lap for about a year or so; I figured that I’d just have to be patient. I got a little sad when Luna would continuously walk away from me as I tried to pet her. She wouldn’t come near us at night time it near out bed! I wanted an animal to love and who loves me! I wanted one to snuggle with me and sleep with me in my big chair. Especially when my pain is quite high from the autoimmune nerve disease that I have, called “RSD/CRPSII”.
Well..,Luna’s been here with us for only about 5 or 6 weeks! Last night she slept for 3 hours in my “Lazy Boy” chair with me! YES!! Yes!! She jumped up into my chair, all on her own and she stayed there snuggling; with me petting her off & on, for about 3 hours!
She’s been coming into our bed at night now. Even during the day, I’ll find her curled up on my side of the bed and up next to my pillow…sleeping soundly!!! Little miss, just came downstairs as Im writing this blog! She returned from a “cat nap” in my bed again!! Wow…patience IS a virtue and good things ARE worth waiting for!
Lastly, I want to tell you about how we turned the water on in our bathroom sink to just a drip….or a little drizzle! We showed it to her . No sooner did we show her, then she jumped up onto the very small countertop and played with the little drizzles of water! She amused herself for what seemed to be quite a long time!! I’ll share the photos and the video if possible! If I cannot show you the video, I’ll try to put the link on here to help you get at least to the video on you tube! Luna kitty playing with water
My husband tells me that I’m much more calm and get less upset now! I believe that it’s true what they say about animals bring good for us and for our blood pressure!! I just know that I love my sweet Luna to pieces !




On Staying Strong….

Wow…it’s been one hell of a week for me…or NO…really…One Hell of a month….or…NO…really…one Hell of a Life… thing after another, after another, after another…..and so on and so forth and on and on! It never seems like I can get off of this scarey “ride” called “LIFE”. Well, sure there are times when it’s more fun, less scarey. There are the good times and the bad…which are exactly the things I wanted to talk with you about today. Well, I guess I will first tell you an update on my heart surgery from the 19th of February this year, just 5 weeks ago. They treated me awesome in the Toledo University Medical Center! I’m healing well, but I don’t know if you recall that the Plastic surgeon, who was with my Neuro-Cardiologist, was there to put a special anesthesia inside of the surgical cavity where my pectoral muscle also had to be rebuilt that day. The pacemaker that was placed deep inside of that muscle, had worn right through it and had to be rebuilt. Yea…just a “little” painful…especially having RSD/CRPSII “full body”…it was /is very painful. They did a great job of keeping the RSD/CRPS at bay and not letting it get INSIDE of my body. We did not want to have me get the RSD/CRPS INSIDE of my body. So they did well! But as the weeks have been going by and if you’ve had surgery as all, you’ll remember that you usually have absolutely no feeling in the skin around the area that was where the incision is….right? That was or is my experience too! But…I’m afraid that the RSD/CRPS is doing what it does best. It is spread to my surgical skin site and now I have a burning on fire kind of a circle area of my chest that no one can touch and it’s “on fire” all of the time. It’s swollen still or more and it gets hot and reddish pink. Not good…not good…

So…do you want the “good news” or the “bad news” first? …Think about it…don’t rush….OK…You want to hear the bad news first…Well…on Monday, the 18th of March. I went out by myself for a short time, just to get out a bit. It was only my 2nd time out alone after my heart surgery. I went inside of a Panera Bread/Cafe’ and proceeded to sit down with my Ipad and my Iphone and my coffee with scones. I needed another “sugar” and so since I saw only one or two people in the whole place, I thought it’d be “OK” to go and just get a sugar packet. I came back and proceeded to “play” on my gadgets. Then about an hour later, at about 5:00 pm. I called my hubby and told him that I was coming home and “on my way”. Then I received a text message from my bank, which read ” we find unusual activity on your Master card and your debit card, please call this toll free # immediately, if you agree”. So I went to reach for my wallet and it was GONE! I looked everywhere…went back to the same register…retraced my steps….it was no where to be found! I drove home, just across the street, in a panic mode and got my hubby. We went right back to Panera and the Manager had already looked at the video from the counter service and he’d been trough the trash and dumpster! AWWWWW what a nice guy, I must say! That was going above and beyond, but he and they know me very well over there. I spend alot of time on my gadgets there. So anyways…we could not find my big fat lime green wallet. It had some money, about 14 credit cards that I never have even used and I carried them around with me!!! WHY??? I’ll never understand?? Also, I had some irreplaceable, special items that my 2 daughters had made for me when they were just 10 and 12 yrs old. I’m sad that I carried them with me, but I wanted them with me all of the time. That’s something that I can never get back, no matter what. But there is a Police and detectives now on the case and we have some good or uplifting news which I won’t divulge here, just in case my “rip off artist buddy (NOT)” somehow reads my blog…he won’t be any the wiser for how the “case” is going. …and YES….I am prosecuting! You bet I’m prosecuting….I’ve had so many bad things happen to me and then this right after a heart surgery~~~!!!!! NO WAY….This guy messed with the wrong girl!!

I wanted to add a short story to today’s post. I sometimes tell you stories from when I was young and today I have one that matches this incident, so I thought I’d share.
Well I was 11years old. My parents took me with them and my two year older brother to a “Payless She store” to purchase some Confirmation shoes for my brother’s big day!
They were looking at his shoes and I was looking at my size shoes! I was standing in one aisle and they were in another. Suddenly I heard my fathers voice saying to me “Suzanne, come here! Listen to me, I need you yo listen like never before…and come here right now!” I saw two African American men
who had my parents and brother in the back room of the she store! One of those men had a gun to my dads’ head and he yelled at me “GET IN THE BACKROOM….NOW!!! “…
I looked at him….and then I looked at my father and inside of my head, all kinds of ideas were swimming. I said to them “Is this “Candid Camera”?? If I don’t cry, I get a prize?” My father repeated for me to come to him; but in my mind I was looking at them and then I noticed the front door was straight shot and not too far away. I was thinking of running out the door but what about my family? I couldn’t leave them behind!! ( No matter who your family is or how they’ve treated you, there is still a love and a bond. Besides that, it all wasn’t always all bad all of the time!).
I couldn’t run away and the thought of that bad man shooting me as I ran, also went through my head! I went into the back room with them. My mother laid sort of on top of me because I was crying hysterically by this time. The bad men told her to “shut her up!!! Shut that girl up or I will!!” My mother tried covering my mouth as I was sobbing and by now I was vomiting too! There was another family of four back in the room with us, and a few employees too! Everyone was afraid and pretty quiet! But I was so scared and couldn’t even catch my breath because I then heard the bad men say that if they didn’t shut me up, “they” would find a way!! My mom said they were grabbing my elbows as if to try and take me with them! I cannot remember that? It all was so chaotic! Remember, I was only 11years old!!
One of the men grabbed my moms hand and tried taking off her wedding rings. My father grabbed his arm and said “Don’t you take those rings! I gave her those when she was only a teenager!”. My mother was hysterically screaming “Bill…get down!! Bill…Shut up, its only a thing!! Get down … get down!!”. While the man pointed a gun at his head and said in a loud voice Shut the “F” up or I’ll blow your “F”—ing head off!”
The man ripped the wedding rings off of my mother’s finger and she fainted right there in the floor! Ive as smothered and scared and could not breathe we’ll! My dad then turned to care for mom and her finger was purple and swollen! While the men ripped the telephones off of the walls, and said to us all “stay face down on that floor for 30 minutes”!! They were also telling all of us to stop looking at them and to look down!
Finally the store manager had some other kind of phone and he called the police! They came and spoke to all of us, including the store clerks, the manager, the other family of 4 and the four of us!
When they allowed us to leave, my mom was afraid to go straight home, for fear that they’d follow us! We went to her brother, my Uncle’s house; who lived very close .
After that I remember being a child and afraid with lots of tears!! Nobody comforted me, the 11year old girl! They comforted only my mother and she was telling them that it was “all Suz’s fault that they took my wedding rings!” She said that because she had to cover my mouth with her ring-finger hand; the wedding ring’s diamonds sparkled. The robber saw her ring sparkle because I was hysterical and she had to cover my mouth. Therefore they stole her wedding rings because of me!!
I had nightmares and I’m sure I had PTSD, and was in need of help! My parents never believed in that sort of thing! We were a “perfect family ” and as long as we appeared that way to the outside world, then it was so!!
I still remember that day clearly in my head! It all came spilling back when I got robbed this week at a cafe, and a bad man took my wallet with literally my “life ….on paper, plastic & sentimental items!!! I hope the police catch the guy! The cop was so kind to me and he said he was “tired of bad things happening to good people”! He’s trying very hard for us and we are definitely prosecuting!