Finding HOPE With Chronic Pain



At first, I had been off of work for awhile and on SSDI for PTSD and CKDII. This was after years of living with abuse, domestic violence and more abuse. I got the help that I needed and was going to try and return back to my job in the Fall of 2002. A man ran through a red light one August day in 2002 which changed all of my plans, hopes and dreams. At first I lived with Chronic Intractable Pain s/p the M.V.A. I suffered multiple injuries. Some of these included: a TBI with 3 years of brain injury rehabilitation (and whiplash), multiple herniated/bulging discs, nerve hearing loss, balance/vision loss/issues, a ruptured biceps tendon, 2 torn meniscus’ along with ankle and wrist injuries. I had 4 CT Arthrograms, which are grueling and painful tests rarely used today. They aren’t often done now because all of the new technology and MRI machines. But I had a pacemaker placed 3 months after the accident and can’t have anymore MRI’s (luckily I had the brain, neck, spine & shoulder ones done right away after the MVA). I endured 8 surgeries with 2 titanium screws in my left shoulder, and I’m on my 2nd pacemaker. In 2007, following right foot surgery, I was diagnosed with RSD/CRPS in my right foot. Later in 2013, I was diagnosed with “severe systemic/full body RSD/CRPS disseminated” with Lymphedema in my left arm, chest, breast. This occurred after what was supposed to be a simple pacemaker replacement surgery. Instead, when the Neuro-Cardiologist surgeon got inside of my chest, he found that my pectoral muscle had a hole worn right through it from the first pacemaker placement. What was supposed to be an easy 45 minute procedure turned out to be a major reconstruction of my entire pectoral muscle and more.

Pain has affected my life tremendously because I had been a full-time working single mother with two daughters for 9 years. I was an Interpreter for the Deaf at a major University hospital and for several school systems magnet hearing impaired programs. I had gone to College for Sign Language Studies/Interpreting and had received honors. Finally I found my soul-mate, fell in love and re-married. We had only been married 5 years when the car accident occurred, which changed my life forever. We used to win medals in “racewalking” together. For several years I had been an Aerobics instructor. At my daughters school and other elementary schools I volunteered by teaching children about Deaf culture and American Sign Language. For four years I taught Sign language class to the 4th and 5th grade children at my daughters’ school. The kids learned several songs in Sign Language and we finished off the end of the year by performing them for the whole school and the parents. Lastly, I volunteered to chaperone whenever possible and I was the jump rope team coach for several years. Receiving the honor of the “VIP” (*Volunteer In Public Schools) award from our school systems’ Superintendent was an awesome feeling. The award was given to me because of my work with the children and for volunteering my time to Interpret for Deaf parents with hearing students during IEP’s and Parent/teacher conferences. I was thrilled to be honored in our town Newspaper!

In seeking treatments, I was in brain injury rehab for 3 years outpatient and had found a pain management physician. He started out with the usual Epidural nerve blocks, trigger point injections, Pain Psychologist with biofeedback and 8 years of PT and OT. Multiple specialists were visited and it was a different one for each injury. I’d gone to at least 5 different shoulder Orthopedic Dr’s and none of them helped me. It was always more grueling Physical therapy and more pain. One of them even said to me “What part of I can’t fix your shoulder, don’t you understand? Is it the brain injury?” Feeling devastated, embarrassed and defeated at that moment, my driver took me home. (*I had a driving company take me to most of my appointments for several years because my husband couldn’t get the time off needed for everything). I had several experiences with physicians, that were just appalling. One G.I. Dr., said to my husband “Wow, you got way more than you bargained for, marrying this one, and you even stayed?” A knee Dr. told me that “everyone my age has a torn meniscus”. I think I could write a book just on terrible experiences I’ve had with physicians. But you know what? I didn’t give up! I continued to go to 5 different shoulder physicians, until finally one touched my arm in such a way that I screamed instantly. He knew then that my biceps tendon had ruptured a whole year prior! He said it had ruptured and then during all of that year while I was visiting shoulder Dr. after shoulder Dr.; the tendon had been trying to repair itself by reattaching wrongly to the bone. I had to have open shoulder surgery to detach that tendon from the bone and then reattach it with 2 titanium screws.

I feel that part of the barrier to my getting the care that I needed was that I “looked fine”. I suppose that because I tried to brush my hair, put on a bit of makeup and wear clean clothes, that meant that I was “fine”. Though I was prescribed per the PMR physician: 2 AFO’s (ankle/foot Orthotic braces for foot drop), knee braces, a shoulder brace, a wheelchair, motorized scooter, a walker, forearm crutches and a cane; I supposed I still “looked fine”!?? Along with the fact that I’d been prescribed prisms for my glasses (which I’d not worn prior to the MVA) and 2 hearing aids for the moderate hearing loss. My husband and friends, or for that matter anyone who knew me could see that I was in horrible pain. It seemed that many of the Dr.’s were oblivious. Luckily, my GP of many years, the PMR brain injury specialist and the pain management physician knew, understood and helped me and that is what mattered most at the time. I even had one person put a nasty note on my car windshield when I went into the grocery store. I had put the HC placard on my rear view mirror and put my cane into a nearby cart. I went into the store for just something small and came back out to a note that I’ll never forget. It was written on a napkin with purple ink and it said “You don’t look Handicapped or sick. It must be a MENTAL thing! I hope you become handicapped for the rest of your life so you know what it is like to really need this spot to park your car”! I was in shock and devastated. I cried all the way home. Then after composing myself, I wrote a letter to the editor of my town and told him all about my experience. I was hoping to help others to know they weren’t alone. I was also hoping that the person who wrote the note, maybe lived in this town and hopefully saw my “letter to the editor” and maybe they would feel some remorse?

I had a pain management Dr. and after doing all that he asked, he wanted to give me a spinal pain pump. I was not a candidate because I have an immune disease called “CID” or Combined Immune Deficiency Disease. He said since I was going to be given only medications, that he wouldn’t see me anymore because “he is looked at under a microscope by the government”. Therefore he turned my pain care over to my GP and told me that the Dr. could call him any time with a consult or questions. The GP did not know what to do with me and gave me a higher dose of pain medicine after pain medicine, which most made me ill. Finally we found something that worked and helped the pain. I was on 2 medications from 2005 thru 2015. Then in January of that year I got a letter from our insurance company stating that they “would not pay for the pain meds anymore after March 11th, unless a certified pain management Dr. agreed with the regimen I was on.” I thought that would be easy, I would just visit my old pain management Dr. and all would be fine. That was not to happen! I went to my GP for my next visit to discuss this letter and what we would do, only to find out it was his last day! I spent the majority of the appointment crying. He promised me that he would speak to that pain Dr. I’d gone to before and send him all of my updated records. He also told me that he would personally speak to that Dr.! We went to the pain specialist that had been my prior pain specialist. I had always been a good, compliant patient. I did everything asked of me. I fought taking pain medications but was told that “it was OK” and to “trust him”. I even had a letter from his own pain Psychologist, stating that I do not have an “addictive personality”. Well, I was astonished to find that he turned me away and told me to “go to a treatment center”! I fell apart and started to cry! Then he told me that my GP had been “investigated by the feds and he was sent to work at an urgent care where he cannot write prescriptions for pain meds any longer”. Then he proceeded to tell my husband and me that “he didn’t want to be any part of that Dr’s MESS”. He told me he would not see me again. I begged him and told him I was a strong person. I reminded him about the letter from his own pain psych. Dr.! I reminded him that I’ve never smoked a cigarette, never drank nor have I ever done any drugs in my whole life! He told me to leave and come and see him “only after I visit and go to a treatment center”. What is wrong with this picture? The problem is that this man is supposed to be a legitimate pain physician. He should know the difference between “dependent” and “addicted”. I don’t get a “high” from my medicine, in fact I despise taking it. I don’t think about it or crave it. If I had a choice, I would never want to take it again!

I never went back to that Dr.! Needless to say, I never went to the treatment center. I didn’t want that following me around in my medical records for the rest of my life. I didn’t want to be taken less seriously than I had been already, because I “look fine”. I went to about 4 or 5 different pain specialist’s who all looked at me dumbfounded or made rude comments to my husband and/or me! Some of them just stood by the door waiting for me to be done with my “story”, so they could say “Ok, well I’ll see you in 6 months”! A few of them said that I was “just too complicated” or had “too many pain issues to deal with”. Finally, I saw one Dr. that was kind, good and respectful towards me. That’s all it takes, folks! It only takes one kind Dr. to listen to you, believe in you and then you believe in him/her. He told me that I had to get off the medications that the other GP had me taking for 9 years. He gave me a different medicine and he told me that hopefully my brain would “be tricked” by the other pain medicine and the withdrawals wouldn’t be too bad. Even though I’d had seizures following the TBI, a heart attack and a CVA already; I wanted to do this at home with my husband’s love and help. I was told to take my last of the old meds on July 12, 2015 and start the new one. I was deathly ill for about 6 weeks. The first 3 weeks were the worst. It felt as though I had the worst flu in my entire life, on top of the flaring of the RSD/CRPS pain and other pain. Finally, I had done it! I had a few blood pressure spikes that were scary and we got some medication to help with that. I earned the respect of the new pain Dr. and I felt some sort of self strength from being able to do it all by myself, for the most part. Today, over a year has gone by and I don’t think about that other medication and I don’t want it. I never want it again actually. If someone offered it to me today, I would say “NO”! My quality of life has gone down a bit. I’m in my chair for most of the days, with about 4 “good hours” per day. But I still prefer this pain medicine regimen that I’m taking now! It works for me and it’s still pain medication but its more than half of what I’d been taking and I feel like my pain is semi-controlled as long as I don’t do too much for too long.

As far as distractions, that is what I want to talk about. There are so many good things that we can do to distract ourselves if we only give several things a chance. I started volunteering as a “chemo-angel”, a “card-angel”, “special assignment angel” and “prayer angel” for the “Chemo-Angels” program. What this essentially means is that I get assigned a “buddy”, someone compatible that I would work well with. It’s usually a child, because I love children and I’m a mom of 2 and grandmother of 3! The child is going through chemo therapy and I send them weekly letters, small gifts that are mail-able and cards. When I get assigned children, I use my kitty cat “Angel Kitty Luna” as the writer of the letters. The kids love to hear about Luna running through the house catching spiders in the basement or playing with her “baby” (her 1st toy). They end up loving my Luna so much, that I made her a Facebook “page” and many come to “visit” her there. There they can see videos of her and see that she is real. It’s good and therapeutic for me and it’s very good for the children or adults that I am assigned to be buddies with. I cannot say enough good about distractions. You are helping yourself when you help someone else. As far as the chemo-angel program, I’m never allowed to say a negative word in my letters and nothing about myself, unless its a fun story or something cheerful. I also took my love of Sign Language and changed it from Interpreting which I can no longer do, into signing songs that are uplifting and fun and posting them to You Tube (*@ASLSuzyQ), which I can do. It makes me hurt more sometimes and I must learn the lyrics first. It’s really very difficult for me but it’s a challenge too. You see, with the TBI it’s very hard to memorize and nearly impossible. With my pain levels, and lack of “range of motion”, it’s nearly impossible to actually DO the sign language. I go over and over and learn a song (because it’s very hard to hear words with music when you need 2 hearing aids). I sing it and learn it until it’s “2nd nature”. Then I videotape myself doing ASL covers of fun, meaningful and cheerful songs. I post them to You Tube and then send them to my few Twitter accounts, my 3 support groups on Facebook which I founded myself and admin. by myself (though the one group is pretty large and I have 2 helpers for that group). I also send them when appropriate, to my Facebook “Pages” which I started in order to help with different aspects of Advocacy and to cheer people up. Another one of my favorite “distractions” from my pain, is my blog and writing. I took journalism in College and I always wrote for my school newspapers. I even founded a newspaper at the University of Michigan hospital, where I worked before I got sick. I love writing and my blog called “Tears of Truth” ( @suzydukettes.wordpress.com), has become more recognized and noticed. It started out as a place for me to write about the abuse and an outlet for me, before I had physical pain to deal with. It has progressed and evolved into a place where I write everything from funny stories to informative articles and my opinions regarding them. “Tears of Truth” is also a place where I can have my own “soapbox” about certain issues that I want to challenge. I even have ways to cope and what to do when you are in a situation with a Narcissists! I write during the holidays about how to cope with pain, people and pumpkin pie! I used my bad experiences and my good ones to help others. I even wrote about the day that someone in Wal-mart stopped me in a public store and wanted to “pray over me because I needed a cane and therefore had demons inside of me”! Now, don’t get me wrong, I love God and I’m a Christian! But I don’t appreciate being told that I am in pain because I’m a “bad person”! I try to write about these and other experiences. I find ways to help others should they come across something like that. I just love writing, music and ASL and I use all of that to help distract me from my pain. I have another You Tube account (*www.youtube.com/suzydukettes), where I post videos sometimes about certain issues, such as that “Anderson Cooper’s CNN Town Hall meeting” and the proposed “Opioid Lifeboat tax” and the USPain Foundation’s “People With Pain Matter”. I helped a group of University students with a project they had to do. They had to find something unknown to most people and make others aware of it. They saw the “CRPS” logo sweatshirt I was wearing while in a coffee shop. They stopped and asked me if I would help them with their project. I had so much fun helping them. I made videos, slideshows and we raised awareness about not only CRPS, but all about Chronic Pain! By then I was in process of becoming an Ambassador in MI, for USPain Foundation. I brought my pamphlets and other resources sent to me by USPain and we spread awareness of both CRPS and Chronic Pain.

I do envision a better and lower pain future for myself and anyone else who wants to “come along for the ride”. I can envision that future even more now because though I started out “alone” or felt “alone” on this pain journey. I now have thousands of people who share their stories with me each day from all over the world. I have made so many wonderful, deep, meaningful and strong friendships along the way. We all have to start with “baby steps”. When things feel too big or too much to handle, not only do I turn to God, but I have my loving husband/caregiver and my dear friends from all around the Globe. I’ve learned so much and I pray that I will continue to learn every day. Today I am better equipped to handle this pain because I didn’t give up HOPE. You never know what “good” could be around the corner. So please don’t ever give up! I just try to distract myself, take my medicine responsibly and use the tools that I’ve learned. This is the way I hope to continue coping and to become a better person and health advocate.

Living Beyond Your Illness


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Hello Luvs,

IF you haven’t read any of my blog before, you won’t know that I always start out my blog with “Hello Luvs”.  I had meant to write this long ago, but time gets away from all of us, so today the phone was on mute and the kitty was lying in her spot with me in the same room and it seemed a good time to write about this.  We can all get down and sad sometimes, even depressed.  I mean, having a chronic illness, or a list of chronic pain illnesses can get pretty monotonous to say the least! If you let yourself get in a “rut”, then you will panic and be sad and “down” and things only get worse from there. You can try to join a support group or make friends that share some of your illnesses. But you really must be careful in that as well. All things are good in moderation, is what someone used to say, right? I cannot for the life of me, remember who said that originally, but I know my mother said it to me many times.  She said “we need water to survive, but even too much water can kill you”. She was right.  Sometimes when we join groups and make friends who have the same or similar issues or illnesses as we have, things can get a bit “strange” at times. It may be a good thing but you just need to be careful as some people try to compare themselves to each other, see who is the sicker one, who is worse or better? Things like that! It is sad but true. The more and more that I work with groups for the past 7 years and with awareness events, projects and people in pain, like myself, I have seem it all.  Sometimes the people do the things they do to make themselves feel better, and that’s not all bad either! It’s great to make yourself feel better by doing something to help others. But when you do it for accolades, applause, gifts, patting yourself on the back or for someone patting you on the back, then it becomes a bad “game” of people hurting people instead of people helping people.

In my life, I first got approved for SSDI in 1998, due to CKDII and PTSD. They had called us the day before my scheduled Dr’s appointment with the SSDI office Dr’s, I’m guessing? They told my husband that they received all of the information from my team of Dr’s. They told him that “she doesn’t need to come tomorrow to see our physicians. She’s been through enough. After reading her history and stories from several of her physicians and Psychologist; we’ve decided that we don’t want to put her through having to tell her story even one more time! She is approved”! I was crying, I was so happy. The reason being, that when I have to go to a new Dr or a “scary” situation (due to the PTSD), I do get stomach aches and diarrhea and even vomiting!  I didn’t want to feel “judged” or ridiculed or afraid again. So that one thing, I did not have to do and I was so greatful for the “gift” of not having to be “sick” through all of the poking, prodding and questions.

As time went on, I ended up getting into a motor vehicle accident, just before I was thinking of trying to return to work maybe even part time? But the MVA just took that notion and threw it out the window!  I will make a very long story, very short. Because this writing is about getting “BEYOND” the illness and pain. I will just say that I suffered and still do suffer from many issues and injuries following that MVA, when a man ran through a red light and not only totaled our car but my body and my brain as well. You might say that my brain “seems great”. I am writing to you and all seems just fine! Not so much! I have suffered since that time from the aftermath of 8 surgeries, screws in my shoulders, both knees damaged, 2 pacemakers, a stroke or CVA and  a heart attack in ’05. I acquired an auto immune disease called “Combined Immune Deficiency Disease”, along with a Neuro-autoimmune disease called “CRPS” (sometimes called “RSD) and also known as “Complex Regional Pain Syndrome”. Mine went systemic or “full body” following my 2nd pacemaker surgery in 2013. The wonderful Neuro-Cardiologist at Univ. of Toledo Med Ctr. tried with all of his might to head off a full body attack of the CRPS inside of me. He did a “internal Bipvucaine surgical wash” and it was because as he went into my body, to replace my pacemaker, he saw that the old one had been wearing a hole right through my pectoral muscle for those past 10 years that it was inside of my chest! So he had to call other Dr’s to come and help him rebuild my Pec muscle first and then he wanted for that not to ever happen again. He tried so hard to stop a full body attack inside of me, from the CRPS. We were hopeful that he could do that as it has worked a few times in the past. But sadly for me, it did not work and I am now with CRPS “systemic and full body”.

After that surgery, which was not my last, I still had to have some jaw surgery, but that did go well. But I could have gotten depressed and given up on life. I don’t have an extended family as far as parents or siblings or Aunts, Uncles, cousins (just a few). It’s pretty much my husband, myself and our cat, Luna! We have 2 grown daughters with their husbands and 2 granddaughters with another on the way in June of 2016.  They are busy and have their own lives to live, but I’m very close to my daughters and so glad of that. Still, because I try so hard to downplay my feelings of being in pain, nobody really “gets it” except those who truly live or haved lived in the same house with me for an extended period of time. It’s hard to explain to friends and family that you are on medication for pain, but that mornings are still bad for me and the pain gets worse with each outing and the more I do. Nobody except someone with daily chronic nerve pain and more, can truly understand. It is OK though because I needed to find a way to help myself and not complain to everyone around me every minute of every day. It makes people tired to be around me if or when I do that. I learned that lesson very early on.

So I became involved in something other than thinking about myself. I became a “chemo angel”, a card angel, special assignment angel and I became a prayer angel. These are all for the same non profit org. I actually volunteer and I get daily emails of who to pray for and then I get a list of who might need a cheer up letter or card, with a small mail-able uplifting item. I get assigned a “buddy” who is going through chemo-therapy. I accept or decline the assignment and then I go from there. If it is a good “fit”, and usually it is; I accept and then I start to send a weekly letter and cheer up mail to them. I send small mail-able items, such as: magnets, book marks, tea bags and such. It is good for me and I enjoy doing it. I have a cat, as I mentioned above, her name is “Luna” but online and for chemo angel kids, she is “Angel Kitty Luna”. The stories for my assignments, which are children, they get stuff from “Angel Kitty Luna”. She writes stories about chasing bugs and jumping up at flies and swiping them with her paws. She tells of how she drinks water from the faucet and sleeps on me, her “momma”. She has exciting adventures and it makes the children smile for a few moments. That makes me happy and it takes my mind off of my own illnesses. I am not allowed to be sad or grumpy or talk about my own problems. I do not ask for nor expect, “thank you’s”. I hear back from some of my “buddy’s” and/or their families, and sometimes I never hear anything…that’s OK too.

I started to dabble in making jewelry one time when we were on an overnight trip with our daughter, who was about 18 at the time. We got some beads and elastic and just made a bracelet. Then I started to look for “awareness” beads online. I started making Awareness jewelry in earrings and bracelets. I would put them up online after I made a website and started to sell them. Then I started some fun other jewelry items as well, such as: Pet jewlery, Swarovski crystal necklace, earrings sets and just a lot of different things. People asked me to make jewelry for their wedding and wedding party. I was so excited to be doing something that I could do sometimes, at my own pace and I took no money except to replenish supplies. The money went to whichever charity the items were for, including the Humane Society.  If it was for a wedding party, then I made it their gift when at all possible.

I got involved in Bible studies when I could, but then I missed so much because they were all in the mornings or later in evenings and I couldn’t do well at either. I started making “groups” for support online and inviting everyone with any pain, or Invisible Illnesses to join. I made the groups “closed” and one is “secret” and one is just “private” and people can choose both or either one to join. I am the only administrator for the groups and it works well for me in that, this way not “too many hands in the pot”.  I don’t tolerate any drama and if I come across a post that is in any way demeaning or hurtful to anyone in any way, I remove it. I have  a couple of “pages” too. Some are ….or actually only one is for people in pain with Invisible Diseases, chronic pain and issues such as these.  The other pages that I have are for ” Angel Kitty Luna”, for helping those who’ve lost hope or who’ve been abused, also for my second love and my old career; that of ASL and Artistic Interpreting. That page is called “I Luv ASL”. I post information sometimes about different things that has to do with Deaf Culture.  Other times I post a song that I might do in ASL. I try to do an Artistic version of a top 40 song or a song to motivate people or make them feel happy.

I have a few very wonderful friends in “real life”, who truly understand or try to, when I’m unable to go someplace that we’d planned on going, for example. I try to go out to dinner once in awhile with my husband and these good friends. We have a really nice time, but then afterwards I’m pretty much exhausted and in pain. Same with putting some quality time into being with my lovely oldest daughter who lives only blocks away. We do something several times per week, but only for an hour to two at most.  Then the rest of the day I’m exhausted and in pain. But it is worth it because  I get to spend time with our granddaughters and daughter. On weekends we try whenever possible to visit our other daughter and son in law, who are due to have a baby girl, Kiera, in June of 2016 maybe once a month or so?

I have been a mentor for RSDHOPE.org since about 2008, after having a mentor from them for a year after my diagnosis. It helped me so much to have someone who understood and could answer my questions and knew what I was going through. Now I try to do it back whenever they need my help. I feel like the Orsini family is my family too. I’ve become an Advocate for those in Pain, chronic pain and with Invisible disabilities. I’ve helped the I.D.A. by doing a feature commercial for them a couple of years ago. I write to try and give people idea and information. I love blogging and helping others. I do try to help other pain org. also at times when they might need me to write something. I have tried to be a health activist by writing for Pain News Network as a guest columnist and I am an avid “tweeter” about CRPS and chronic pain as well.

We can live beyond our pain even though we must live with it. I don’t mean that we should “make light” of it.  We can share experiences with others and have our friends that have pain. I feel we should also get “out of that” at times and have friends and activities not involving Dr.’s and only our “sick friends”. If you don’t feel well you might try music or writing, like I do? There’s always knitting, crocheting and things with your hands if they don’t hurt too much. Some can do Yoga, that’s not a thing I can do. But you see there are Bible studies and mom’s groups and libraries, coffee shops and a whole world of things to try and keep your mind off of your pain. I honestly have full body, systemic CRPS and I have several bad pain diseases such as : Rheumatoid and Osteoarthritis, Arnold Chiari malformation I, Degenerative Disc Disease with multiple herniated and bulging discs in my neck and lumbar spine with L-4/5 radiculopathy. I have Poloyneuropathy in Collagen Vascular Disease and Autonomic Neurapathy along with several heart problems and a pacemaker.  I have right long thoracic nerve injury where an 8″ span of nerve is broken and I have numbness in my hands/feet due to a CVA in 2006. I have Prinzmetal Angina which are Coronary Spasms. It’s alot and I have much pain. But the pain Dr. even told me “I cannot ever take your pain away, but I can try to make you more comfortable”. So that’s what we do. I take medications to help and I get about 2 good hours per day before I start to slide. I am unable to drive more than to just go to the corner store and get milk or eggs or something like that. So I truly know it’s not an easy thing to do.

Just try your very best to get involved in something, anything aside and outside of your pain. Try not to do something where you need a “pat on the back” or you need to “pat yourself on the back”. You don’t need to have a “title” or be a “important” or “special” person in the pain community because you ARE an IMPORTANT and SPECIAL person no matter what! Do something that makes you feel good just for you and believe me, if you can relax even for 10 minutes, it can be TV or music, a book or quiet time with your fur baby or babies. But those 10 minutes when your body and mind are relaxing will do you a world of good in your physical and mental world. Get someone to drive you if you are unable to drive and do something like a small outing even once per month. ..get out of the house if at all possible. These things will cheer you up, I promise! Lastly, find some organization, or a family that could use some kind of help that you are able to do or give?  Like I do the writing letters or even just join a prayer group at a church? Be someone who prays for others, that cannot hurt you? If you don’t have that belief, find something that you believe strongly in and participate in some way?

If we just concentrate on the pain, that is all we will have. If we just concentrate on Facebook, Twitter and/or online groups 100%, we must remember that all of these people that we associate with in the “illness themed groups” are also all fighting their own battles with pain. They can feel vulnerable, in pain and intolerable at times; when they may not mean to be that way at all! Make sure you are getting real and up to date information and double check it for yourself if you know how to use the internet. Help a group or a person in need ….you don’t need money to do that. You can do many things that you probably don’t give yourself enough credit for doing.

Know that I always have all of our lives best interest in my heart an soul and mind. I want only what is good for you and for me. I want to help and the other way to help is to “KEEP HOPE ALIVE” (my favorite slogan that I started using as a Meme and in other ways during CRPS Awareness month in 2013!!). Don’t lose hope and do not lose your temper. If you cannot sleep, that doesn’t help with pain either. Try as best you can to sleep or take a nap during the day if at all possible. Try to Live beyond the pain and use it to work for you and your life instead of against you and your life! Try to find something to make you happy and remember the best way to make yourself happy is by doing something kind for others without asking anything in return. Random acts of kindness are also free and do a lot of good for you and others. Peace to you and know that someone cares!

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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