House Resolution 267-Michigan/USA


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This post is a very exciting post for me to write. Most of all I want you to look at the pictures because it's my most exciting accomplishment in a very long time. I wrote a letter to our Michigan House of Representatives, Rep.Diane Slavens, last year. I asked if we could get a resolution to make November be a "legal" month for Awareness of RSD/CRPS, in Michigan; where I live.
Well ..,yesterday in my mailbox I got some exciting news. I opened up something that was addressed to me from the Michigan State House of Representatives . I opened the large manilla envelope, to find “Resolution #267″. It states that ;”in the state of Michigan, November will be legally now, RSD/CRPS awareness month”. There are many many things in the resolution and a number of representatives signed it. I am so excited that I actually got something done and accomplished in the awareness arena for RSD/CRPS! You can look at the pictures below, which is why I put a many photos. I hope that you will take the time to look at them.
I’ve been an administrator and originator of a support group for people in pain and with invisible diseases; especially RSD/CRPS since 2007. I think trying to get something done to help awareness and to support people like myself; who suffer from this very painful, progressive and debilitating disease, is so important. There are many people who are aware of breast cancer and of other cancers, Lupus, Rheumatoid Arthritis (which I also suffer with), Fibromyalgia and other debilitating diseases. Many people don’t know about the pain and suffering of Reflex Sympathetic Dystrophy a.k.a. Complex Regional Pain Syndrome.
Through my “CAUSE,” which is called “R. A. S. E. For Invisible Diseases” (www.causes.com/RASEforinvisiblediseases), Meaning : “Race for Invisible Diseases”,and through my work as a Health advocate for RSD/CRPS & other chronic pain illnesses, I have tried to have our voices heard.
Well I think that We’ve finally had our voices heard. Someone listened to me and someone cared. That person was Michigan House of Representatives, Rep., Dian Slavens. She cared enough to put this through for me and for all of us in pain; and for those suffering with RSD/CRPS. We now have a month that is dedicated just to our CAUSE: ” Reflex Sympathetic Dystrophy”, also known as “Complex Regional Pain Syndrome”. I just want to take a moment to say thank you so much, from the bottom of my heart. This means so much to many people, not just me. Again I say “thank you”. In Michigan House of Representatives resolution # 267, our voices have been heard !! Now… All of you who are suffering, please help me spread awareness and support for this horribly debilitating, progressive and painful disease!

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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 “Suzydukettes” channel on You Tube),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.

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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.

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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/jewelrydesignsbysuzanne.beadsNbaubles ) 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!!:

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

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The FIRE of RSD/CRPS…”STOP, Drop and Write”…..


Hello Luvs,
This month is “Nervember” also usually known by non-RSD/CRPS’ers as “November”! Actually the reason that “we RSD/CRPS’ers” call it “NERVEMBER” is because this horribly, painful, burning, fire-like feeling disease is a Nerve & Auto-immune disorder and November is “RSD/CRPS Awareness Month”! I know some of you may have never heard of RSD/CRPS or “Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome” *aka Disease now instead of Syndrome. Why should you know what it is? I had never heard of it until 2007 when I originally was diagnosed with it. But you see, I promised that during this month of RSD/CRPS (*”they” cannot decide what to actually call it?) that I would try to reach out EACH and EVERY day to at least one person, to spread awareness and get support for this painful nerve disease. So far, I’m being true to the CAUSE and I’ve been posting or speaking to people every day about it; along with asking people to then tell others about it. It’s sort of like a school “fan out”….when you tell one person and then ask them to tell another and then another and people tell more people and it spreads like “wildfire”…not to make an assimilation or anything…or maybe so? …LOL..
I’m not going to write about things that I’m doing this month to bore you, but I do want to at least get the “word” out about this disease and I do want to tell you about my fundraiser(s). I have so much more to tell you, so I will definitely make this part short. Than maybe…just maybe…I can “wow” you with some fantastic words of wisdom…well…OK…maybe not…but at least I’m friendly? I have a fundraiser going this month and it is a bit like 2 in 1!! I have several stretchy braided type of orange and white bracelets that someone has made for just this fundraiser, for me. I am a jewelry maker, but with the RSD/CRPS in my hands as well as OA and RA, I could not make these this time. Have no fear, I have 10 of them and if you send in just 1$ or $1.00 or “one dollar”, it gets you “ONE” chance to win one of these nice RSD/CRPS support/awareness bracelets! If you send in more than $1.00, you get that many # of chances = to the # of dollars that you send in to me for this fundraiser. Then, if you send in $5.00 or more, you get your name in that drawing still, for the number of chances that = the number of dollars you send in…AND you get into the drawing for…and get one chance to win the handmade (by me!!) Swarovski Crystal bracelet. It is made with the finest Swarovski crystals in the color rightly named “fire” and it is an orange with a bit of red and tiny bit of yellow. It does look like a flame, or I think so. It also has the handpainted glass or ceramic awareness beads in clear with orange ribbon or white bead with orange ribbon painted on it. I usually put on a very tight or strong magnetic closure /clasp so you can put it on yourself if you are disabled. I usually put a “HOPE” word bead on it , embedded in it and/or an angel with wings and a halo etc…It really is pretty and no two are exactly the same. So you might win that if you send if $5.00 or more! Then 2nd prize for the $5.00 or more, drawing, is a pair of RSD/CRPS awareness earrings (that match pretty close to the bracelet)OR if you are a man and you win, if you don’t want the earrings for your wife or girlfriend or daughter or friend, then you can choose an RSD/CRPS key chain for awareness instead….Lastly, 3rd prize will be what is left after 2nd prize…either an RSD/CRPS awareness keychain or a pair of awareness earrings! If you would like to participate, you can just email me at: jewelrymkr@aol.com and please think about helping…
OK so…if you skipped reading about the fundraiser, I totally understand…but…will you please go back and read it for me??? Ha ha…just kidding…
I thought that I’ve never told you exactly how my story started with the RSD/CRPS. I believe that Awareness month would be a good time to tell you a little bit more about my own struggles and pain with this and a few other “Invisible Diseases”. ***OH …OH…I almost forgot to tell you…Guess what??? I was nominated again this year for a “WEGO HEALTH” Activist Award…this year it is for the “Best Kept Secret”…ha ha…I’m not quite sure that someone with 3 blogs, a private blog, a photo blog (= 5 blogs total), an “ABOUT ME” page, Several Pinterest Health Boards * for Dysautonomia/POTS, RSD/CRPS, RA, PAIN etc.., 2 support groups-one on Facebook with 820 people and 1 on Google + with 100 people, You Tube @Suzydukettes channel with a ton of information about pain, Invisible illnesses and RSD/CRPS, a Stumble Upon site, A Facebook “support In Jewelry” page, a Tumblr blog “Support IN Jewelry” or tumblr.com/supportinjewelry, and more…can be a “secret”…LOL…I just think it’s funny but also I’m honored and tickled to death!
I was in the car with my husband and we were going to go out to dinner in Plymouth, MI to the “Box Bar”; after spending the day at the “Milford Memory Daze” festival of artists, food and fun! We had just been walking together, holding hands while sipping on a lemonade together. Within what seemed a few moments time, we were “hit” by a man who had driven right through a red light, as we were going through the same intersection on a green light! Time seemed to go in slow motion as I look back on that day. Somehow I knew just a second or so before impact, that “if” I made it through this, my/our life/lives were going to be different. My life did not flash before my eyes and I saw no angels or bright lights…until I awoke on the ground ???how many minutes afterwards! I awoke to lying on the ground but on a back board, with my neck in a brace and my body tied down to the board. I could not see, except for the bright sun and some “blue”, which happened to be the Policemen and Paramedics trying to help us/me. I was scared because I couldn’t see anything really, it was all blurry except what I’ve mentioned. I was calling for my husband and asking for him and yelling out his name. I had to know that he was OK. I heard the Policemen telling him to “get away from her, Sir, please”. I guess they told him that I was better off not having him there near me? I’m unsure why they thought that, but he said that I was being worked on and thrashing a little bit; to where I cut my chin and was bleeding from the neck brace. I hate that “tied down” feeling and was starting to get hysterical because I was afraid and couldn’t move and I wanted my husband.
I don’t remember the ambulance ride, but then I do remember as I went “in and Out” of consciousness in the E.R. at St. Joe’s hospital here in Ann Arbor, MI. I remember a really nice male nurse who told off a Dr. who was in a hurry to get home and who was going to just sent me home like that! The nurse was yelling at him and saying that “she cannot remember or think or anything, she is in so much pain that she cannot even get up, we cannot send her home! So just in a knick of time, a trauma Dr. came in and started everything rolling! She did more X-rays and CT scan and my husband said that people were leaving the hallways near the X-ray room because I was screaming as they moved my body around a bit. I was admitted to the general medicine floor and was there for almost a week. I couldn’t even get up by myself to go to the restroom. I was on IV’s and it was a horrible experience. Since then, I must say that I’ve had a couple of my surgeries at St. Joes, and everyone has been better than kind to me. But that week it was horrible. I wasn’t myself, I couldn’t think right. I then spent the next 3 years in TBI *traumatic brain injury rehabilitation. I went daily until about 3:00-3:30 pm, from 9 am. I did this from about 2003 (*because I tried the DMC rehab for both physical and brain injuries first. It was a place from HELL. The administrator pretended to be nice until I went into their program. I was trying new meds and getting ill daily and they thought I was “faking” or something? I was hanging over the toilet bowl, sick…so very sick and vomiting. They wanted me to make cookies to try and help my 2 frozen shoulders and all of my other injuries. Little did I know that the program they had was a “6 months and you’re OUT whether you are better or not !!! They don’t care and didn’t care if I got better at all. According to them, I wasn’t getting better FAST enough! They strapped me on an exercise bike and left me as I was asking for help and nobody came, I passed out and hit the floor; giving me more pain than I started with. The P.T. “Polly” was famous for being a P.T. for one of the Detroit Red Wings, NHL players. She was rigorous and grueling and pushed me much more than was good for me and I got worse instead of better. I couldn’t even put my clothes on and off by myself due to pain in : both shoulders, a long thoracic 8″ nerve injury, both knees, lower lumbar spine w/herniated and bulging discs, cervical spine the same thing and right wrist, right ankle, neck , eyes, ears and to top it off, I was having little seizures for the first 6 months! I had so many tests once I got out of that awful program, I found a good nurse manager who helped me get help, answers and the surgeries and brain injury therapy I needed.
This writing does no justice for the absolute “hell” that I feel I went through going from the awful hospital stay, the terrible DMC program and the many many Physicians that I had to see, until I realized that “YOU aren’t stuck with the first Dr’s you see!! YOU HAVE TO BE YOUR OWN ADVOCATE! YOU KNOW YOURSELF AND HOW YOU FEEL….YOU know how you were before and how you are now! You never have to “settle” for some Dr. who thinks that because he spent several years in Medical school, that he’s better than most but has not one ounce of empathy in his demeanor!! I was feeling like giving up…I had been to so many Dr’s, to Cleveland clinic and just too many hospitals. Did I ever tell you that I’d been to several big Medical centers for my left shoulder, just one of my injuries. I complained about a ‘shock’ running down my arm when I straightened it. One shoulder Dr., about the 3rd or 4th one that I went to (because I knew something was not right, but I felt so disbelieved…)…he was an Orthopedic specialist…he looked me in the eye and while I was crying softly because he’d just told me that he thought it was “nothing”; he said to me “What part of “I CANT FIX IT” don’t you understand?…Is IT YOUR BRAIN INJURY???” Oh My Gosh!…that was about the nastiest thing that a Dr.’s ever said to me…I wasn’t going to try again, but decided ONE MORE TIME, and I was done!! I went to Providence in Novi, MI. I saw a Dr. J. M. and he was the nicest Dr. and he took my left shoulder and touched it in a certain way and said “does this hurt?” I shouted out a bit, because it hurt very much! He knew right away that I had had a ruptured biceps tendon!! I’d had it for over a year before someone finally listened to me and was willing to help me. I think that I just had so many, too many injuries and so much going on with my brain injury, forgetting things, balance and falling issues, heart issues, loads of nerve issues, discs bulging and herniated and so much more; that the medical professionals, or MOST of them just looked at me and wanted to “run”!!
I finally had a great “team” in place, with my primary care Dr., my pain Dr., Orthopedic shoulder, hand & knee Dr’s, Cardiologist, Neurologist, Neuro Cardiologist and more. Things started going wonderfully as soon as I had them in my “corner”! In these years since that first day in the E.R. with my MVA, I’ve had 10 surgeries, going on my 11th tomorrow! Yes, tomorrow, November 11, 2013, I’m going in for a screw in my upper jaw. The oral surgeon didn’t feel comfortable doing surgery on me in his office due to my having had a heart attack in ’05, a CVA or stroke in ’06 and having “Long QT syndrome”,(which there are no symptoms for, but can cause sudden cardiac death). So I have to have this done in the main hospital, under general anesthesia and I have to have two anesthesiologists present!
I will end this post in just a moment, but before I finish today’s thoughts, I wanted to just tell someone…maybe even someone who might care…..*I guess I say that because my oldest daughter, who left home 9 years ago, estranged herself from me/us to be in the company of all of my abusers –because they didn’t love her enough to care about her doing illegal/immoral things and I DID!! But one time …a few years later, she called my voicemail and left a message that was heartless and bone chilling when I heard the words of my little girl, my eldest girl, who was my best friend and daughter and my everything (as is her younger sister)..she said “SUZANNE (she didn’t call me “mom”)…Why do you think people care about you? THEY DON’T”….It was heartbreaking after I’d carried her 9 mos, had a C-section, took her to “mommy N me classes”, took her to pre-school and helped, took forgotten homework to school and had to leave my own job 35-40 minutes away and drive to our apt. to get it and then drive to her school, so she wouldnt’ get in trouble! I went to every baseball game, swim meet (even in a wheelchair after that car accident!!), chorus concert etc…I never missed anything because she means everything to me…she always will ……and my heart still aches and my heart attack was considered to be from “broken heart syndrome”. It was still very much a heart attack but now I know that people can truly die from a “broken Heart”!! I’m glad I didn’t die because I’m here with my soul-mate, my husband, Craig and Im able to still be there for my other daugther, my baby girl. We are still BFF’s and though she lives a little far from home, we talk on facetime and see each other as much as possible. WE are even planning a beautiful wedding for her shortly. She found a wonderful young man and they are going to be so happy . I can see that they are soul-mates! I’m so very happy that they’ve found each other and they share God in their lives.***……
…..But I just wanted to tell someone that I do try not to feel sorry for myself, I try to help others, do fundraisers for my invisible diseases and I don’t give up …not ever! When I think about all of the things that have happened just since the MVA in 2002, it makes me just want to cry. Let alone the abuse and pain I endured at the hands of my abusive family, and my ex’s, for all of those
years prior to meeting Craig, my husband & soul-mate of 17 years almost. I just feel that I’ve been through way too much for one person and though I try not to wallow in it…I can’t help but think about it the night before yet another surgery. I mean….I had abusive family growing up (the SSDI people AND my Psychologist have told me that I’m the “worst childhood case of trauma/abuse that they’ve seen in 36 years!), I married when I was 20 yrs old only to move in with another abuser. I got taken in quickly by the church..they told me that “God wouldn’t want me to stay with someone who hurts me like that”! I then moved to AZ and lived with my aunt and uncle there, while working at a school for the Deaf. I came home after a year or so because my brother was marrying my best friend. I then remarried at age 22 and I was with my daughters’ father for 8 years, while being abused, mistreated, cheated on and horrified for almost all of those years! I left with my 2 daughters and was a single mother, working full time for several years. I went to part time for awhile just to have Fridays off, to be able to help out in their school or with their classrooms. I had so wanted to always be a “stay at home mom”. All I ever wanted in life was to be a mother and a sign language interpreter…I got to do both! But they both got taken away too early. I had to go to work full time and I couldn’t do interpreting due to lack of insurance etc. Then after the brain injury, I could and can still remember the signs, but I am totally unable to interpret any longer due to the lack of concentration and inability to listen, **(hearing loss with my ears), have the language go into my brain, translate it into ASL and have it come out of my hands. MY oldest got taken away from me due to her own choice, at age 18. She’s now 28 years old almost; and I miss her every day . Not a day goes by that she isn’t in my heart, mind and soul. Then I lost my mom to colon cancer in 2002, she was 71 years old. She had been abusive to me, but I still loved her and love her. She was still the only mom that I had. There were some times that were good, but few and far between. After my mother died, my father and brothers proceeded to be even more horrible and evil towards me. They treated me inhumanely and succeeded in turning all the rest or most of the rest, of my Aunts, Uncles and cousins; especially on my mother’s side, against me! They…or my dad didn’t want or doesn’t want them to talk to me because he’s afraid that I might “talk” or tell them the truth about stuff that happened in our home! What better way than to turn them against me?
I went through the whole car accident event and all of the surgeries and injuries that followed, even through to today; all by myself with no family there for me at all. Well, not any of my biological family. Lucky for me, I have my wonderful soul-mate and husband and my youngest daughter who has stood by my side. I thank God every day for having them in my life. I’ve turned the horrifying situations of my past and even the ongoing pain & fear of the events of today, into a bit more positive engery. I became a “chemo-angel”, card -angel, special assignment angel, and prayer angel for a non profit program for chemo therapy patients with Cancer. I became a Mentor for newly diagnosed RSD/CRPS patients. I help them get adjusted to their fears and new life with so much pain; the burning fire nerve pain of RSD/CRPS. I started a CAUSE to raise funds for finding a cure for this nasty disease. I started two support groups to help others deal with any and all “Invisible Diseases”. I have over 850 people in my Facebook support group and 100 people in my newer support group on Google +! I started trying my hand at making support and awareness jewelry and it grew into a website (that I started and designed by myself) “Support In Jewelry”, also a matching Facebook page of the same name and a Tumblr blog that is geared only for my “Support in Jewelry” items. I donate support jewelry to silent auctions and to other groups and people who ask me and who need it for helping people in pain. I try to use the social networks to get the information out to the people and to get empathy, caring and love to those who need it, along with support. I have :YOU TUBE informational videos and more videos of me doing or performing emotional /feeling songs in American Sign Language/ASL, that have a great meaning to me and ones that I feel would give good feelings to others as well. I do all of those things so that I will NOT focus on my past history of abuse, my pain, fear, broken heart, sadness, loss of being able to do everyday things etc. I am not trying to say that I don’t feel those things or think about them, but I really do try to be as positive as possible. I try to smile instead of whincing. I try to attempt things even if I can’t finish them. I try to get out of bed every single day and focus on the “HAVE’s” instead of the “HAVE NOTS”.
I guess I’d say the main thing is, if I had to give you one thing to think about as you leave this blog today, I would leave you with this: “Try to be as positive as possible. You may not always feel it, you may not feel it most of the time; but the more you try, the more it becomes real; at least some of the time! Try to help others, play with your animal(s) and your grandkids & your children as best you can, even just sitting, talking or playing in creative ways. Try to find something you are able to do to keep your mind as sharp as possible. Find something to do that not only makes others feel good, but makes you feel good. Being kind and helpful towards others in and of itself, will make you feel more positive. Complaining is OK when you just can’t take it anymore or when you need to vent, but just remember that everyone has their own “pain” in their own worlds and lives; we all need someone to listen to us at times, so be a good listener as well. Lastly, don’t give up…if I have lost so much in life and have gone through all of the things I’ve gone through and I’m still here, trying and not giving up….not today….then you can too! Together we can make it …not alone..but together…get through today…and tomorrow if you want to give up…then think about that tomorrow ….but for today…don’t give up or give in…”
With love, pain, fear and thoughts of you in my heart…Suzanne. (PS…it’s OK to have hours and days when you are not always positive, we cannot be that way all of the time. Just make sure you get yourself back up and on the right track…and please..please try not to bring others down, try not to get calloused and insensitive to others needs…keep your heart)

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PLEASE Check out My “Rebel Mouse” Awareness/Support Page


PLEASE Check out My “Rebel Mouse” Awareness/Support Page

This is a fairly newer website but it’s pretty cool, because everything that you put anywhere, usually shows up there! I have so much awareness and support information up …so please check it out!

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