NOVEMBER /NERVEMBER…is RSD/CRPS Awareness MONTH


Hello friends,

I’m so sorry that you probably think that I’ve gone AWOL! LOL….NOPE…I’ve been sick and then I got better for a day and then I got sick and then better for 2 days and then worse than the first time…UGGH and GRRR!!! So…needless to say, I’ve just not felt good enough to even write a story or anything of a sort. I apologize for that, because people get sort of used to reading things that someone writes and then it’s hard when it’s suddenly seems to disappear! I promise I won’t disappear unless I have no choice…or unless it’s just like lately…when I just cannot do any writing, due to being so ill!

First off, I want to tell you about my two fundraisers for this month being “NOVEMBER IS RSD/CRPS AWARENESS MONTH”.  I have a Swarovski Crystal + awareness beads bracelet (an RSD/CRPS support bracelet that I’ve designed and created with the fire colored crystals, clear and orange along with hand painted awareness beads in clear with orange ribbon & white with orange ribbons on it) and a matching pair of RSD/CRPS awareness earrings. These two items are on Ebay auction right now  and you may be able to find them under my name “Jewelrymkr”  or under RSD/CRPS awareness jewelry. I will post the link after I’m finished here as well, as long as I can figure out how to do it…LOL …

My 2nd fundraiser, is as easy as visiting my Facebook page and checking out the pictures on my page of the stretchy orange and white bracelets. I have 5 of them and all you have to do is send in $1 for each chance to have your name in the drawing. I will put your name into the drawing 20 times if you send me 20$ and so on…. The first 5 names that my husband pulls out of the “box” or the “hat”; those 5 people will be sent a bracelet on Dec 1st and the drawing will be held at 4pm on November 30th, 2013!! If you have any questions, please don’t hesitate to ask me in the comments. If you don’t want to participate or cannot, then if you do know about RSD/CRPS, please try to tell at least one person per day during the month of November, if at all possible, please?  The reason for this part is because there is such a lack of knowledge regarding this horribly painful nerve disease. It’s also now been researched more and is known to be a “Neuro-autoimmune disease”. It is #42 on the “McGill Pain Scale”, right up there with childbirth and with amputation of a digit!  Please help me /us get the word out about Reflex Sympathetic Dystrophy, which is now mostly known as “Complex Regional Pain Disease *(used to be syndrome now it is disease, hence it is known as CRPS or CRPD).

IT is Not a new illness, as it was found in our soldiers who came back after fighting in the Civil war!  But many Doctors do not know much about it, but maybe only heard a bit about it in Medical school!  It is really sad when someone is in a specialist’s office and the Dr knows nothing about it. For example, I went to a Dr, who is an Immunologist. He sat my husband and me down in his office, not in an exam room; for what was to be my first visit.  He never even examined me or anything, but said first “So….what is this “R.D.S.”??  Umm…first of all, Doctor, it is “R.S.D.” not “R.D.S.”….Secondly, if you have to ask me what my illness is, when it affects all body systems as it spreads to “full body/systemic RSD/CRPS; then …well…let’s just say that I looked at my husband and he looked at me; we nodded at each other and we left that office!  I cannot tell you how many times I’ve had Dr’s, not even medical students…but real staff physicians; NOT know what my painful, horrible nerve disease is all about.

I’m so lucky that my G.P. is very good and knowledgeable in the variety of medical issues that I have to deal with, along with my RSD/CRPS. I have a wonderful Cardiologist, who’s a Neuro-Cardiologist; and he knows so much about it that when I had my pacemaker and heart surgery in February 2013, he researched this disease.  He and his Colleague, a Plastic surgeon, both actually researched RSD/CRPS and found that they could possibly help me with the “spreading after surgery” issue by doing an Internal “WASH” with a numbing medication called “Bipvucaine”. They’ve found that before closing up and right after a surgery on a patient with this dreadful disease, they can do this internal numbing wash with Bipvucaine and most of the time the RSD/CRPS will not spread. Normally people with this illness, are fearful of any surgery and so are their Physicians and Surgeons, because it is a known fact that any kind of Pain or “hurting” or re-injuring of the person with RSD/CRPS, the higher the chance that their illness will spread to the surgical area or to other parts of their body or even to “FULL BODY” RSD/CRPS, like I now have.

Unfortunately for me, it did not work. I was so positive and excited that it would work for me. They were so kind and so excited to try it as well. I hoped and prayed and wished for it to be true for me, that it would not continue to spread, but it did in fact spread to my upper chest, L>R and my left arm got much worse. You can see the veins right through my skin above where the pacemaker was placed and where my pectoral muscle was totally rebuilt. It had to be refurbished due to the fact that my 1st pacemaker that was placed in 2003, February; wore a hole right through the muscle and they called the plastic surgeon to come in and totally repair it. All of this didn’t help and was not expected at the start of the surgery.  Therefore, my RSD/CRPS did in fact spread and now it is considered even more “full body” than before when it was also considered “full body” as well.

I wanted to tell you something, just for your own information and so you don’t ever let this happen to you or someone that you love and care about. I wanted to tell you about my Cardiac Catheterization from HELL!  It was 2011, August, and my old Cardiologist said that my Cholesterol was 200 and he was concerned because of my chest pain and symptoms, along with the blood work itself. He decided to due a stress test and it came out “Positive”, therefore I needed to set up a Cardiac Catheterization for a day or two later.  I was on the guerney in the pre-op room, with a few nurses who were actually looking up “RSD/CRPS” on GOOGLE!! They didn’t know what it was, and I was trusting them with my heart for a procedure?? They were honestly, I promise you and kid you not, looking up the words for my disease and did not want to take my knowledge or my word for it; but they did not know what it was!! I had trusted my  Cardiologist! He promised me that this new Dr. that he hired, though new and young, he was knowledgeable and he trusted that man with my life!  He knew my history of abuse and PTSD and “battered woman’s syndrome”. He knew that I had a big fear of being “hurt”, “abused” and “not listened to and not taken seriously”.  He still trusted this “new guy” with my life!  I was not so sure. AS that procedure got started I got less and less sure!

They wheeled me into the Operating room or the “CATH LAB” where they do the Catheterizations every day.  I was awake full of pain from my lumbar and cervical herniated/bulging multiple discs. I was hurting from my already flaring RSD/CRPS that was considered “full body” by then, already. I was in agony from my knees, my shoulders, Polyneuropathy, radiculopathy, degenerative disc disease and just too much to mention now, here.  They did not seem to care! They didn’t offer me any comfort, not even words!  The Dr. was actually yelling at me because He couldn’t get me to fall asleep. You see, usually one is put to “sleep” for one of these kinds of invasive procedures. Mostly because they put a needle with a catheter attached into your groin or your wrist and through to your heart, to get a look at your clogged veins, if there are some!! I begged for the Dr to do it from my groin as it would be far less painful for me there because I had no former pain in that area and no RSD/CRPS symptoms. He did not care and he didn’t listen to me one bit! He just kept on doing what he was going to do whether I wanted him to or not. He acted as though I wasn’t even there in the same room with them.  He went in through my arm, which is always a horrible idea when someone has RSD/CRPS in their arms and legs! It flared me up for a very long time and I had a blue/purple and red, hot and swollen right wrist and arm for quite awhile.  But the worst part was that he was yelling for them to give me “1 mg of dilauded” and a very small amount of Versed (which is supposed to make you forget).  BUT DID HE NOT LOOK AT MY CHART??? Did he not see or listen to my words at all??? Did he not know that I was on more than that daily up to three times daily for pain??  The amounts of “sleep” or “twilight sleep” medications that he was putting into me, was not affecting me at all! I was already used to pain meds from the pain Dr after my auto accident in 2002.  I was not in any kind of twilight sleep or even feeling drowsy or “out of it” in any small way! I knew exactly what was going on and I was horrified that nobody was listening to me or most of all, no one was trusting what I said. That is a horrible feeling.

Finally, as I was getting wheeled OUT of the Cath Lab, I fell asleep for the next 4 hours! When I woke up ,they got me out of there quickly, and home asap!  IT was an awful and horrifying experience. I had written about it right after it happened. I wrote about it in my other blog called “You N Me And A Cuppa Tea”.  I have photo’s of  my bruised and swollen wrist/arm/hand as well. I called it “The Cardiac Cath from Hell”.  I went back to my Cardiologist’s to get the results and I told him all about what had happened. He yelled very loudly at me and he’d always usually been a kind man and good Dr….but that day he yelled loudly and said to me “STOP”!  He wouldn’t even let me finish telling him my story of what happened. I think he was upset because he knew it was bad and he didn’t want to hear it. I mean he trusted this guy, right? WELL….I GUESS NOT..because I called back a few months later and his nurse told me that the young Dr. who’d done my Catheterization, was gone and my Dr. had FIRED HIM because he “hurt” several more people after me!! What the heck???

You know…it’s like being abused by someone… because you can tell on them and nobody will listen…Such as my ex-husband, who is an EX COP!  Nobody except the “Domestic Violence Shelter” and my attorney, would actually listen and believe in me at first. I had police reports of his pushing, hitting, shoving me and pulling his many guns out on me and threatening me and our two baby girls! His nickname was “Rambo” if that gives you an idea?  But that story is for another day. For today, I will end with the fact that I just don’t understand why that Dr. had to hurt others after me, and nobody would listen to me at first? Not until it happened again and again, did someone listen and then fire him!  Same with my ex-husband! He was “friends” with the lawyers and the judges and the policemen and such. Everyone knew he was violent and a pervert, but nobody cared to help me at first. But when he went on to “hurt” another girl, got charged and found guilty by a jury of “Obscene conduct and Indecent Exposure”, he was fired quickly or “Forced to resign” exactly. He moved 1,000 miles away to the state of Maine, to get away and “Find himself” he says!  He was fired and could “NEVER be in criminal justice again, nor be out on the road again”!

So…it’s just a bit frustrating that so much has to happen before we are believed.  Sometimes its too late for us or for others, before we are believed and not taken for granted as “weak” or “weird”…etc.. Lucky for me, I have a wonderful Neuro-Cardiologist now and a great GP and a great “team” of Physicians. They are all on my side and they work with me, not against me and I feel very lucky. They now all know what RSD/CRPS is about as well.  So Let’s get more Dr’s and nurses and lay people and anyone and everyone to know what this horribly painful Neuro-autoimmune disease is all about!! Please try to learn about it this month…go to : http://www.rsdhope.org/crps  or go to http://www.freewebs.com/jewelrymkr….or go to http://www.rsdsa.org …and get informed…get involved and spread the word.  If you need support, I have a GOOGLE PLUS group in the “communities” called “BE Aware & Care”..It is an open Support group for anyone in Chronic pain or who has an “Invisible Disability”..There are so many people suffering and who do suffer when someone tells them they shouldn’t be in a Handicapped parking space because they “don’t look sick”. Well…sometimes looks are deceiving and we can be very ill and very much in pain, but look OK to the outside world. Don’t believe everything you see or don’t see and only half of what you hear!!

You can also check out my video…that I did to try and advertise awareness for November and RSD/CRPS Awareness month! It’s on You tube and it is a performance of me doing ASL or “American Sign Language” to Katy Perry’s song,”ROAR”. You can find it here:  

     …it is just showing how we have a “burning, fire-like pain” and how I will never give up or give in and I will always “ROAR” and fight to the end!!Image

Thank you and “Happy NOVEMBER IS RSD/CRPS AWARENESS MONTH”!!!

ImageImageImageawareness bracelets for RSD/CRPS…on EBay and at : http://www.freewebs.com/jewlerymkr and at tumblr.com/supportinjewelry

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