Dancing Through The Fire ….AND…. You’re Gonna Hear “US” Roar! *an International Affair*

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Hello Luvs,

OK..yes, I did “borrow” my title from the new Katy Perry song “Roar”. I had just done a performance of that song in ASL (American Sign Language), a few weeks ago, in a You Tube Video at: http://www.youtube.com/ASLSuzyQ -and it just gave me a new sense of power and strength. When I was practicing and then finally performing that song in Sign Language, for “November-RSD/CRPS Awareness month”; I originally did it as a way to let others see that we are in pain but we CAN still have the power to change our own perspectives. I got such a rush out of the words, the feeling and the emotions that ASL brings to those words, that I didn’t realize that I’d overdone it once more. I had used up too many “*spoons” (*explained later).
I was down for not only the next week or so, but I’m still ill a month later. I ended up with a sore throat, fever, cough, pain *more. I got on antibiotics, then fell one night. I just hit the floor powerfully and don’t know how I got there, except that before the left side of my head hit the floor, it first hit the cupboard and then the countertop and then the floor! I screamed out for my husband, who was sleeping, but I forgot that my laryngitis made it almost impossible for him to hear me. Finally, he came downstairs and held me with and ice pack on my head for an hour, while I whimpered, cried, and felt sorry for myself. I went to bed about an hour later, though I don’t recommend that. I think you should always go to the hospital when you hit your head THAT hard and you are on blood thinners for Atrial fibrillation. Also, since this was about my 3rd time or maybe 4th time of hurting my head this badly, or worse….I really should’ve gone to E.R. (*Just so you know a little history, in 2000, I hit my head on a metal pole as I bent down to grab something and I felt “ice” going down my face and it was numb for 4 months with some residual permanent damage whereas my eyes don’t have a complete blink, nor do they shut all the way. I need special gel in them at night. Also you can see it mostly in photos, if you look closely, my left eye wanders and the one side of my face goes down still a bit, when I’m tired. I had a CT scan and got prednisone for brain swelling!!! In 2002, I was in a bad car accident. A man ran a red light and I had multiple injuries, tons of pain, nerve injuries and too many to tell you here, now. But I suffered an MTBI or Mild Traumatic Brain injury and had to have 3 years of TBI rehab from 9-3pm daily M-F! I’ve had several falls in between and OH…I forgot…I also had bad whiplash in another car accident in AZ in 1983, when a drunk lady hit me from behind. She was driving 45 mph, whiIe I was stopped at a traffic light. Whiplash is not good for the brain injuries either! I was born with Arnold Chiari I Malformation. My brain’s “tonsils” or hindabrain, swell into my spinal cord, which causes great pain as well. Lastly, without too many details, I will tell you that I grew up in a family where I was hurt by those who are supposed to love me the most. I was “punched” repeatedly in my temples, my head etc.. It happened many many times from as far back as I can remember and it didn’t end until I moved out at age 20. My mother used her knuckles instead of her fists; because “it hurts more”, she said. I won’t elaborate on the abuse right here, right now; as this is not about that part of my life. This is just a little introduction that hopefully can help others see that those of us who suffer from CRPS and other “invisible diseases/disabilities” have and do go through many of the same horrors and/or wonderful parts of life as everybody else go through. We just have this horrible, burning, hot “fire”-like pain that we suffer from and endure unending. There are many other components to CRPS, than “just” the pain. But that is the worst part of being afflicted with it. I want to say right here and right now, that just because sometimes you cannot see a persons disability, disease and/or pain; does not mean that it doesn’t exist! Most of us actually do try to hide it because we are usually judged harshly and scrutinized by others who are well, or others with their own health issues. I’ll let you look up the medical diagnosis, terms, symptoms and outcomes of people with this painful disease, because I want to use this time in a better way. You can visit : http://www.rsdhope.org or http://www.rsds.org to find out more regarding the questions and answers for this debilitating illness.
When I had my 7th surgery, following that car accident in 2002; it was April of 2007. I was having my right foot operated on and the Dr. had told us it would take her about 30 minutes. My husband was getting worried after an hour and half, when she finally came out to speak to him. Her exact words were “Well, it was a lot more gnarly in there than the X-rays showed”. After 5 days, I was hobbling around my home, and suddenly felt what I would describe as “1,000 sharp razor blades cutting my foot/ankle”. It swelled up instantly, about the size of a nectarine!! I had a nectarine sized “knot” sticking out of my now “black” ankle! I screamed as it hurt more than ever before! We went to the ER, and they practically laughed at me and told me that “it was swollen from the surgery”!! WHAT??? I tried to explain that it just “happened” and it obviously had something to do with the surgery, but this was not “normal surgery swelling” as they tried to force me to believe. We contacted the surgeon, luckily she is kind and gave us her cell phone # …she told us to meet her at the surgery center in the morning before her surgeries. I had to live with that excruciating pain over night!! She said that my “synovial joint sack broke”. She explained that it was all of the joint fluids popping out into the area, making the swelling and bruising colors. There was absolutely nothing she could do except help the pain a bit, and send me home to rest up. I went for my 6 week check up and found out after 6 weeks of “fire, burning, hot, swelling, sweating, nerve pain” in my ankle, that I had ” a bit of RSD/CRPS”. A “bit” of it? That is what she said …and she handed me a script for another pain Dr. (after I’d been through 5 yrs of pain clinic for all of the pain and injuries following the car accident), and she handed me a script for “Lyrica” and sent me on my way. It was the last time I ever saw her. I went for a second, third and fourth opinion; they all said I have RSD/CRPS. But at least the 2nd Dr., a foot and ankle orthopedic specialist, gave me some paperwork with information about “What RSD/CRPS is” and what to do and where to go for help. It was nothing really, I was pretty much “stuck” with this diagnosis and felt like I was “on my own”. Sure, some of the Dr’s who’ve known me for a long time, felt bad but nobody offered me anything to help. The only one who helped me was my old pain Dr and my GP. I got on a regiment and starting doing a little better. Then after 2 years, by the 3rd one, I was told that I had “full body” RSD/CRPS. Every time and any time that I had any kind of procedure done, that was in any way invasive, my RSD/CRPS would and does spread. My last surgery, or 2nd to last, in February 2013, was on my heart and I had a pacemaker replacement along with a pectoral muscle rebuilding. My 1st pacemaker had worn a hole right through my pectoral muscle and I needed it to be reconstructed. My Neuro-Cardiologist, in Toledo, OH, asked a well renowned plastic surgeon to help with that surgery because she’s had experience with researching RSD/CRPS to find out how to lessen the spreading of it, following surgery. She did her best with an internal “BIpvucaine wash”; meaning they put a numbing medication right into the surgical wound before they closed me up. This was all in the hopes of keeping my CRPS from going to my chest. Sadly, it did not work; but I still give my very wonderful and special Dr’s much credit for trying and researching it as well.

This is the month that those of us with the fiery pain of CRPS, call “NOVEMBER” … “RSD/CRPS Awareness month”. As you’ve seen in my above description of my own history (in short form); we also have to deal with daily painful occurrences that happen to most people. Yes, this month, each year, is dedicated to RSD/CRPS. It is a not rare, but not well known, very painful Neurological, “Invisible” disease. The letters stand for “Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome”. For the purposes of this writing, we will just call it “CRPS”, as the “RSD” is pretty much being done away with in these last few years. Dr’s and those who’ve researched this disease, have found that it is actually an “autoimmune disease” with components that involve the nerves, bones, muscles, blood, and skin. It has been noted that once you have an autoimmune disease, it’s likely or a little more likely, that you can become afflicted with another autoimmune disease. Those are actually words from my Orthopedic hand specialist at my appointment last week; where I found out that I certainly and most definitely have RA or Rheumatoid Arthritis now, as well as the CRPS (as well as other health issues).
After reading some of what I’ve gone through, you might conclude that I feel alone, in pain and secluded from the “real world” because I’m unable to do many things that most of you who are healthy, can do. That might be how some of us feel, especially when we are overwhelmed with too much “on our plate”. Luckily, for me, I have a close and personal relationship with God. He helps me to look to him for comfort and get ideas on how to cope by listening with my heart and soul, to his directions. Instead of “choosing” to be a “sick” person, even though there is no real choice…you are or you are not…sick. But, I can choose how I react to that illness. I can always have a few bad days when I feel sad or “alone” in this….but I have to bounce back and be who I truly am inside. Who I truly am, is a woman who’s been through quite a lot and had much more on my “plate” than some others, but not as much as some people. There are always people who are better and always those who are worse. It is what it is ….and not much you can do to change the impact of a painful disease and what it can do to you and your family, your husband and your children. But what we can do, is find way to cope and deal with it on a daily basis. Try to use the “spoon theory” (by Christine Miserandino….you can find information about it at: http://www.butyoudontlooksick.com). It is a way to cope and do only what you need to do to get through each day and stop when you cannot do any more. Try to make good “choices” and not give up when you hit a “brick wall” with a Physician who knows nothing about this disease. Keep on trying Dr. after Dr. if you have to, until you find someone who believes in helping you. They’re out there, but few and far between. We all need to try and keep positive and even when it’s positively horrid, we can surely feel sorry for ourselves for a little while, gather up our senses, regroup and then come back and start again!
I’ve found that I simply hate feeling “alone”. I don’t have to be “alone” these days, with the technology that we have today. At any time of the day or night, on any given day of the week, during any month of the year….I can “be” amongst people. People who are in pain, just like me. People who feel like giving up sometimes, just like me. Real people who are simply other human beings with much pain and who are trying to make this life still feel meaningful. I’m talking about my CRPS “community”. WE are friends! We have found true friendship and trust in each other. There is an International group of people with CRPS! We somehow have found each other via our blogs, our groups and Facebook! This is invaluable for someone to not become so depressed with illnesses, that they no longer want to be part of society. We can “instant message” each other, in the blink of an eye. We can lean on and trust in each other far across the boundaries of miles and miles of Sea, Ocean and land. There are quite a few of us, too many to try to mention right here and now. But as I am in the USA, I can reach out to someone in the middle of my deepest, darkest painful night, and find someone else on the other side of the “pond” wide awake because it is only their lunchtime! They in turn, can type out a few words onto Facebook messenger, and we can have a conversation about the flowers, the snow, and then also….the good, the bad and the ugly of it all. We can and do Skype each other.  It’s as if I am sitting in their living room and we are having a conversation face to face. We can even share a cup of tea if we want to, in today’s modern technological era!  We all have and share a common bond. You may have thought that the bond was going to be “illness” or “pain”. No…the bond we share is of a much greater magnitude than even the horrible  8,9, 10+ pain we can endure at times! It is the sense that we want to choose, at least for the most part; to be positive. Not always and not every minute of every hour of each day; but as much as possible we lean on each other and try to stay in a positive mode. To go about each day in a positive way and let that shine onto others. We try to write; in order to get a message out there for awareness, respect, research and more knowledge by everyone associated with this painful illness. Many of us have started and have become administers of large support groups and we are sometimes “counselors” (without the letters after our names, but with much more in the way of respect for the pain, the feelings and the every day aspects of dealing with CRPS) for our groups and for each other. We work together to gain knowledge and to raise money for every aspect of this excruciating and disabling disease.

I will be leaving a link at the end of this blog post, actually it will be many links. It is where you will find the writings of those who live near and far across the “ponds”. It will be links to their blog posts of today’s date. We had all decided to do an International blogging post today, to show our solidarity in supporting each other in the Pain of RSD/CRPS. We are all sharing something about this month, the awareness, the lack of knowledge and/or awareness and the friendships we’ve made because of it all. Each and every one of us has done certain special things this month and throughout the year and years, to make a difference to the RSD/CRPS community. We’ve tried so hard to make that difference be something real and important. I know that I’ve been doing a fundraiser/raffle drawing this month. I’ve been raising money that will be delivered to RSDHOPE.ORG on December 1st, 2013. I’ve reached out to my one support group of over 800 people, and my google + support group, that is new and has 100 members. I’ve reached out to my friends, my family and anyone that will hear me. I started to feel sad that it is already November 22, 2013 and the end of the month is in only 8 days. I’ve only raised about $135.00 thus far. But I am so appreciative to those who have donated and as I’ve been saying all along, “even one dollar can make a difference”!! I’ve got 6 stretchy, orange and white bracelets made, to be the first to be raffled off on December 1st, after the month of November is finished. For each dollar that you donate, your name goes into the drawing that many # of times! Whereas 25.00 = your name in the drawing 25 times!!! The second half of the drawing, is for a handmade (by me, “Support In Jewelry” at : SupportInJewelry.tumblr.com and http://www.facebook.com/SupportINjewelry) Swarovski crystal Awareness/Support ribbon bracelet. The 2nd raffle drawing is for anyone who sent or sends in at least $5.00. Their name goes into this drawing one time and that crystal /awareness beaded bracelet will be 1st prize. I’ve said that if I get at least $300.00 in donations, I will also have a 2nd and 3rd prize of : a Swarovski crystal RSD/CRPS support pair of earrings and a key chain for RSD/CRPS support, will be the 3rd prize *unless a man wins 2nd prize or 1st prize and he wants the key chain, he will get to choose that first. Every penny that I collect in donations WILL be sent to RSDHOPE.ORG. They’ve helped immensely by giving me a “Mentor” when I first found out and was diagnosed with this painful disease. It was someone who had been through it already and who was dealing with it in a positive way. She answered my questions, listened to my whining and complaining and gave me advice. Now I am a Mentor and I do the same for those who are newly diagnosed. They also have so much information on their website and it is run by a “family”.
Anyways….I guess what I want to leave you with today, is that without this month being deemed “Awareness” month for RSD/CRPS, we might not have met each other. I still have many friends yet to meet and get to know. But this special group of people from this International platform, really makes me feel like I don’t have to internalize all of my pain. I can share it, write it and get it out and there are people who Will listen and those who DO care! The world is a very large place and if you can have friends in many places, it really helps you to deal with things in a much more positive attitude. They know how I feel…they know what I’m saying! They know what I mean when I say “I cant today”….. I am lost without these special bloggers, friends and International comrades…You are some very special people….thank you so much for giving me the privilege of calling you my friends. Don’t forget to check just below, as I’ve posted all of the links to my International friends, Posts’ for this “RSD/CRPS Awareness Month”/November 2013, as well.  I think we’ll call ourselves  the “International Blogger’s” ummm….the “International Blogger Sisters” nooo…hmmm what about….”The Bloggers Across the Pond”…OR…..ummm….. “The United Bloggers-an International group”? Well, we’ll have to sleep on that one, I’ll get back to you, luvs…..
….Until Next time…..Suzanne

List of International CRPS Bloggers (*Friends)

1)   Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients… http://sylvieghyselscrpsdrc.wordpress.com/2013/11/22/blog-sdrc-international-des-amis-merveilleux-et-des-patients-experts-crps-international-blog-post-wonderful-friends-and-experts-patients/

2)   Elle in the UK: An informal International network of CRPS patients… http://elleandtheautognome.wordpress.com/2013/11/22/an-informal-international-network-of-crps-patients/

3)  Suzy (me) in USA: “In  ASL, a Performance for NOVEMBER /RSD AWARENESS MONTH”….MUSIC is UNIVERSAL….emotions have no boundries!!: Roar by Katy Perry in ASL

4) Lili in Canada: Love Knows No Bounds… http://www.tamingthebeast.ca/2013-11-22/Love+Knows+No+Bounds/

5) Jo in the UK: CRPS Awareness Month International Blog Post, A Community of Angels… http://www.theprincessinthetower.org/ blog/2013/11/23/CRPS-Awareness-Month-International-Blog-Post-A-Community-of-Angels.aspx

**watch my ASL/performance of “Roar” video here:   http://www.youtube.com/watch?v=0ePkDlLO2X4

**Please contact me here in comments if you’d like to donate to the RSD/CRPS fundraiser. I’ll give you my PayPal address for you to send it there if you wish


8 thoughts on “Dancing Through The Fire ….AND…. You’re Gonna Hear “US” Roar! *an International Affair*

  1. Hiya Suzy, what a beautiful post! The positives to be found in the online community of CRPS patients is all the more apparent in this post as it follows your own experiences that you travelled along the way beforehand. You are an amazing woman for coming through it all, I’ve rarely known a soul as bright and open-hearted as you. You positively shine through in your posts. Oh, and your ASL accompaniment to ‘ROAR’ is awesoooome! (I loved it so much I added it to my post for readers to see there too! 😀 )
    Big hugs and a big grin from me, xx


    1. thank you so much Elle…I enjoy your blog as well. I see your spirit shining through and I appreciate that you took time to write a note here for me..thank you so much. I’m also happy that you liked watching my ASL performance of “ROAR”, as I feel it is “my story”…xx hugs…


  2. Lovely article, Suzy. You are such a super-hero! Your light and positivity shine through despite all the challenges you have faced. So happy to have connected with you and to read your work. Keep on shining! ❤


    1. thank you Lili, what a lovely person you are, and have been. As we’ve sort of followed each other on “fairyland”. I think our “international posting” turned out wonderful. Your blog post was awesome and your lovely, brilliant personality flows into your writing…hugs


  3. Loved reading this Suzy, amazing story, only sad you’ve been through so much but you’ve somehow come back brighter, as you shine. Feel very blessed to have met such inspiring souls. Sending hugs and love too sweet friend x x x


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