Please Help This Blog Win?


Hello Luvs!

This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!

 Here’s the link:

https://awards.wegohealth.com/nominees/562

Why I Wish To Be An Ambassador for U.S. Pain Foundation? My Pain Journey…


 

**I RECEIVED THIS RESOLUTION FROM MY TOWN OF CANTON, MICHIGAN,  FOR “PAIN AWARENESS MONTH” -SEPTEMBER 2016

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***I RECEIVED THIS PROCLAMATION FROM THE GOVERNOR OF MICHIGAN, RICK SNYDER FOR “RSDS/CRPS AWARENESS MONTH -NOVEMBER 2016 AND COLOR THE WORLD ORANGE DAY FOR NOVEMBER 7, 2016”

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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.

Saying “See You Around”, To An Era Of “HOPE”…American RSDHOPE.ORG


Hello Luvs,

I found out about American RSDHOPE.org closing their doors long before it hit the mainstream community. I had a “gag order” to not discuss it with anyone. I did as any good friend would do, and I kept my mouth shut.  I was shocked and saddened to hear the news though. Today I am still sad to not have that website opened forever for all to get what I got from them. “THEM” meaning the Orsini family, and especially Lynne Orsini, or “Mom O.” to me. Lucky for me, I am “adopted sister” to Keith and “adopted daughter” to Mom O. and I will get the pleasure of having them in my/our life/lives for a very long time, I pray.  I’m not sure the entire RSD/CRPS community knows enough about the real people behind the Organization. Today I will tell you a little bit about the people and the organization. Any details about RSDHOPE.org, that I write about today, have been taken directly from their website at: http://www.rsdhope.org. The writing that I do today about the people, the family, the Orsini’s, is from my heart.

First, I’d like to give you a bit of information about the history of the RSDHOPE organization. Keith was diagnosed with CRPS in April of 1993. This was 8 yrs after a car accident in which he broke his back & tore his rotator cuffs. It went to “full body” CRPS. Keith and his family thought that was the “beginning” of this illness. They had not known that he was suffering with this disease undiagnosed since 1974! When he got the spinal injury is when the disease evolved into “full body” CRPS. But actually it all started in 1974 when he was hit in the face with a baseball!  His cheekbones were crushed, his nose broken. Keith wanted to stay in the game but his dad wanted him to go to the ER. Dad O. “won” and at the hospital the re-set his nose, fixed his cheekbones.That was the start of the pain, memory issues and all of these things associated with CRPS. But back then they had no name for it. His parents were very diligent in taking him to many hospitals and Dr’s to find out what was going on with him. They never did get an answer but they got “more of the same” that we all still get today! Such as: “your son is on drugs. Your son Wants more drugs. he is seeking attention because he is the 4th child in the family.  He is acting out. He is making it all up.  The pain is all in his head. He is exaggerating his pain.”  A few of the Dr.s’  even tried to say it was a couple of other diseases which they then researched & dismissed. They  never got an answer back then. He graduated High school and then College. He continued playing sports all the way through High School. He suffered all of those years with the: migraines, pain above the neck, face, eyes, ears, top of head etc.  He had all of the symptoms with Allodynia, sensitivity to sound, touch, vibration, temperature etc. Also, an unusual thing happened to Keith, in that he lost some vision in his left eye. But up until the spinal injury, Keith describes his years with the original CRPS as a “walk in the park”.

It was only in 1993, after the car accident injuries and all kinds of horrible pain, when they finally gave him the actual diagnosis of “RSD”. This is what he suffered with all along since he was 14 yrs. old! The first Dr. told him that the “RSD would burn itself out after a year or so”. Hmmm….he’d had it for 19 yars already, so he was not believing her assessment. Then 3 months later he went to a pain management Dr. who told him to “buy not rent a wheelchair”. (**I remember being told that same thing when I first got my motorized scooter and then my wheelchair, because my shoulders had been injured so badly, I could not maneuver the scooter very well or for very long.My husband and I had tears in our eyes, and I was actually crying when we walked out of the Dr’s office that day. The day that the PMR Dr. gave me a “Permanent” HC placard for the car.)

In 1993, Keith moved back in with his parents. He needed their help and they were there for him every step of the way. He had hoped that after getting a name for his illness and pain, he’d find a wealth of information about it. Instead “he found a huge hole where information should have been”, he said.  Keith got out of his wheelchair after about 7 years. He started using it only when absolutely necessary after that.

As you know, the pain of RSD/CRPS is always there lurking around. Sometimes its a 6/7 on the pain scale and sometimes its a 9/10. Just as many of us know, the CRPS is most always a precursor to many other diseases, ANS failure/problems, EDS,  autoimmune illnesses, FMS and more. It does weaken our immune systems and this is the culprit.Keith said that same sentence that many of us say, and that is “I wouldn’t wish this pain on my worst enemy”.

In 2008, Keith moved to Florida for treatment and to get out of the cold weather. It made him worse, staying through those cold Maine Winters. First, I want to tell you that Keith is stubborn and I feel like we are kindred spirits. He volunteers at a school with children and reads to them etc. I taught sign language and still try to go in and do that when I am able. We all need to do something because if we do nothing then we hurt more. If we do something then we hurt more. Why not do something to take your mind off of your pain just even for a little while? If you can make someone smile or make a difference in someone’s life, then if you cannot work outside the home, you are still doing a service in life. I volunteer as a Chemo angel, card angel, special assignment angel and prayer angel for the Chemo-angels program. All it takes is being able to write a short letter, say a few prayers  and maybe send a little bookmark or a magnet or something fun to someone else who is suffering. But with chemo angels you never speak of your own problems or pain. For that little bit of time, you dedicate your thoughts to someone elses pain.

Do you know that people who suffer from CRPS are in pain 24/7/365? We are in pain all of the time. So why not do something rather than do nothing, if the pain is going to be there anyways? Keith did that and I do that and I know many people with this pain, who try to use whatever they can for the good instead of wallowing in the bad only. That’s not to say that we won’t have bad days, weeks or even months. But whenever we can, we must try to do something that helps us concentrate on someone else and making their day better or giving someone a smile.  I like Keiths’ own words when he says that “Just getting out of bed in the morning is a decision that may increase your pain. It is what you decide to do after that that determines your destiny.”

Just like Keith, I have tried many different treatments and pain medications. The Fentanyl patch works for him and it is also working for me. Funny thing is that his insurance company forced him to try a generic patch for a month and it threw him into a horrible flare. I had that same incident happen to me. I’d been using the same generic patch for a long  time and they suddenly just changed brands on me!  Let me tell you….it is different and its true that not all generic are the same. Just as not all generic are the same as the original medications. Anyone with CRPS knows that once you are under treated and in a flare; it takes a long time to get it back under control. It takes a whole month before you are allowed to get a different medication too. Now days with the way things have changed and are ever changing; the medication situation is getting worse.

People see me and they think “I look great”. Even the Dr.’s say to me “Oh wow, you look happy and great, I’m glad you are doing so well”. Why do they assume that just because I’m trying to be a pleasant person who doesn’t constantly complain, that I have nothing to complain about? I try to do things. I go places and I get ice cream with my husband and grandchildren. We are planning a trip right now to go to a pain conference in Maine for a few days. Am I a little nervous about going? Yes! Do I know that the driving and the days out doing more than usual are going to make my pain worse? YES! But am I going to do it anyways? YOU BET I AM!! I’m a strong and unusually tenacious person. Keith says that he is the same and he makes sure that he does something at least 4 out of 6 days, with his wonderful and beautiful wife, Anjanette. She also suffers with pain from MS. They have each other and that is a great thing to have. I have my Craig, my soul mate, my love, my best friend and now my caregiver too.  We all need someone and if not a spouse, then a parent, sibling or best friend. I just “look” fine in my photos because I’m trying so hard. I get up and I put on make up every day or 6 out of 7 days. I get dressed and I try to do at least one thing each day. No matter how I feel, I try to do something or else I would just hibernate and feel sorry for myself.

I got involved with RSDHOPE back in 2007 or 2008 actually. I called from the website and spoke with Keith’s sister Karen (who has since passed away, sadly). She and Mom O. spoke with me and gave me some information and then set me up with a “Mentor”. It was up to me to call her and whenever I needed her, I called her. She wasn’t my best friend but she was my “mentor”. Someone who was volunteering her time to help me when  I had fear, questions or unrelenting pain that led to feelings of sadness. She always helped me and I will never forget her.  Later, after I didn’t need a Mentor anymore, we kind of slipped away from each other. But I know if I picked up that phone, she would be there again for me. Just as now I’ve been a Mentor for many years now. I’ve been a Mentor for not only RSDHOPE but also for RSDSA . I’m now an Ambassador for the Chronic Pain Foundation.

The reason that I’m writing this article is because earlier this past month, we had to say “goodbye” to RSDHOPE.ORG. The website itself will be open for about 5 years with updated information. The brochures were updated in 2016, so they’re good for at least those 5 years too.  Keith and Anjanette took Mom O. into their home. They wanted to be a family together and help each other out. Mom O. couldn’t do the call volume and website upkeep by herself or just the 3 of them together. They just couldn’t keep up the pace that is needed to care for 400,000 people and so many who call on a daily basis. People call needing Mentors, support and a suicide hotline sometimes. We all retire and start a new phase of our lives.

Now is the time for RSDHOPE.ORG aka “American RSDHOPE” to be dwindling down, to retire and to “go on vacation” so to speak. It’s time to “pass the torch” to the new generations. Sadly, that means that there’s a big hole in my heart.  A place that I supported for years and years is not there for me anymore. It’s just a website with information. The people behind that website full of wonderful information are still here but they aren’t there.  The place that I called “home” for my RSD/CRPS is no more. I thank God that I am good friends and consider myself “family” to the Orsini’s. I thank God that they see me in that same “family” sort of way. I can call Keith up and say “Hey bro” and he will say “so what’s up, Sis?”…I still have my brother, Keith. But all of the people who will not have RSDHOPE.org as a backbone to lean on, like I have for many years;will be missing out on something very special. The Orsini family is special to me and they are always and forever in my heart. I’m happy to have been a part of that family for so long. I’m really happy that I’ve gotten to know them and especially Mom O., who is so kind, loving and giving. When you’re afraid, who do you want to talk to? Your mom, right? Or someone who is very close to being like the mother you’d always hoped to have. That is Lynne Orsini, or my “Mom O.”. She is full of heart, hope and kindness. She always had time for me and my questions and my quandries. I got to know the whole family except for Dad O., and I wish I had known the man who started all of this. But I do know the man who is taking the time to be finished with something that was great in its time and will always be remembered as such. He and Anjanette put this and other things aside now, to be with Mom O….they want to be together as a family for as long as they can all be together. I am happy to have been a part of that, a part of RSDHOPE.org for at least 8 years. Now it’s time for me to move on and keep the Orsini’s in my life in a different way. We chat online or on the phone. We can still be brother and sister, mom and daughter and sis-in laws. We just won’t be doing it from the window of the RSDHOPE.org website. Now we will be doing it as just people, friends and as a family.

I am also happy to be a part of the family of RSDSA and it’s Executive Director, Jim Broatch. I’m excited and joyful to be a part of the US Pain Foundation, as an Ambassador. I don’t care if I have a “title” or a “name”, I just want to be a part of a “family” that does good for people. I want to do good for people. I want to lessen their fears as mine were lessened. I want to do fundraisers by making something or doing something to get the money to help us find a cure for this horrible and painful illness/disease. I want to help children with this illness as does RSDSA. Already I feel like I’ve been “adopted” by these organizations. I have special friends that are also my “family”. I help and do as much as I’m capable of doing with full body/systemic CRPS, among many other painful illnesses.

I get up each morning and I try. First I lay in bed and put in my eye drops because my eyes are so terribly dry, that I cannot even see in the morning or at night either. My husband, who is also the love of my life, my best friend and my caregiver brings me my oral medications. I lay in bed and moan and sometimes I cry as I try to remove the splints on my hands/arms, which are very very swollen and painful. I sometimes cry as I remove the socks that I have to wear to bed. It’s due to the blood from the lesions on my feet that has stuck to the socks I sit up first and my husband is there as I lean on him and try to muster up the strength and suck in the pain for another day. Another day full of smiles and doing what I’m “supposed” to do, to keep this life going in some kind of positive direction. If not for keeping mostly positive, then what would life be for me or for my husband, my family or my new grandbabies. Don’t get me wrong, believe me, I do get negative. Just ask my husband! But I always pick myself up by the bootstraps and keep on holding on. What is the alternative?

Just as we say Goodbye to RSDHOPE.org or American RSDHOPE. Just as Keith and the Orsini family move onto another phase of their lives. As they are now finding out what they’d like to do together and where they want to go in life.  I am also changing and growing. I’m finding out who I am in this illness, as a person with “severe systemic RSD/CRPS dissminated”.  My family is changing, growing. My husband is gearing up for retirement in a couple of years. I am finding a place or a couple of organizations to set up my roots and grow as a person, again. It’s time to say “goodbye” and when one door closes, another one always opens up.

I’ve always felt at home with RSDSA, as I’ve written parts of my blog for them and I’ve done fundraisers for and with them. I’ve gotten advice from Jim B. when I was nervous about something or when I had a “gut feeling”. He steered me right, but made me make up my own mind about it. I’m getting to know Samantha and others who make up the family of RSDSA. I’m getting to know my US Pain Foundation “family” as well. As we sit here…..as I am writing this, I have a suitcase packed.  I’ll be taking my first trip since I got the diagnosis of “severe systemic CRPS disseminated” 4 years ago, in March 2013. Before that time, I had lower extremity CRPS . If that wasn’t bad enough to go along with Degenerative Disc Disease, Connective tissue disease (Polyneuropathy in Collagen Vascular disease = EDS vascular), Autonomic Neuropathy, Dysautonomia/POTS, Arnold Chiari Malformation I and the migraines that go with it, Rheumatoid and Osteo- Arthritis, Prinzmetal Angina/Coronary spasms, Atrial fibrillation, Sick Sinus Syndrome, Multiple herniated/bulging discs at C4,5,6 and L4,5,S-1 with Radiculopathy. I have lesions which are Eczema secondary to the CRPS long term. I have a pacemaker with a cardio messenger box doing EKG’s 24/7/365 next to my bed and sending them via the airwaves, nightly to my heart Dr. in Toledo at UTMC. So much more that I’m getting just too tired to write. So much because people have their own things and after a few diagnosis’, they really don’t want to hear anymore. Can’t say that I blame them. Can’t say that I blame you at all. We all have our own “situations” to deal with. Our own “set of cards” that we’ve been dealt. I’m going to go “play cards” this week with the US Pain Foundation and part of some of my old and new “family”. I’m getting in a car with my husband and driving 2 days (*lucky for me my cousin is staying at my house with my kitty, Luna) to go to a leadership conference. I will get to meet and gently hug many of the people I’ve come to know and love over these years following my car accident and the pain/injuries that have gone with it.I get to have an adventure and meet new people that I will grow to know and love. I will learn from the US Pain Foundation. I will take with me what I learn and use it to help others from now on. How about you?

Let’s all follow in the footsteps of the Orsini family and try to keep people informed and get up each day and do one thing to help yourself and /or someone else to get through their day and yours. We aren’t saying “goodbye” ,we are saying “img_7788 or will I get to go here?AAEAAQAAAAAAAAW0AAAAJDc1NjcxM2I1LTk0NmYtNGVlYi04MDNiLTExMmNiYTM2OTVlZg

There’s still so much out there left for us to see and to do, we cannot let it go because of pain and fatigue. I just can’t let it go. I’ll muster up every bit of strength I have left and with the help of whomever will help me, I will do it. I will….. I can because I’ve already been through so much and I have made it through. I will make it through again..

Lifeboat Act Will Drown Those Who Live With Chronic Pain


Hello Luvs,
There’s a new proposed tax by Senator Joe Manchin from W. Virginia & 6 other Democratic Senators! They’re being supported by Hillary Clinton! This tax is called “The Budgeting for Opioid Addiction Treatment Act”. It is also known as “The Lifeboat Act”! It’s no “lifeboat” for anyone except for the big addiction treatment centers who stand to make millions of dollars yearly!

These Senators want to make the chronically ill and those persons suffering with the highest amount of pain, pay for addicts to get help for their addictions! Why on earth should pain patients have to pay for anyone to get treatment, while they’re struggling with medical bills as it is??

Would it be OK then, to force people taking anti-depressants to pay for an eating disorder treatment center because some of them possibly also have an E.D.? Should Insulin dependent Diabetics pay for new Dialysis centers ? Then what next? 

It’s not good, fair or proper to force a tax & punish innocent people who are already struggling & suffering! It’s about as ridiculous as that “Device Tax” that Pres. Obama had proposed last year that got shot down, luckily before it ever started!

When will “they”get it through their heads that pain patients who suffer with chronic pain day after day, are NOT addicted to their Opioid pain medications!!?? They do not get any type of a “high” from these meds. Suppose these Senators took the time to ask anyone suffering from debilitating pain, if they like these medications; they’d find that the answer is “No”!

Chronic pain patients are not  addicts! An addict doesn’t just depend on their Opioids, but they crave it, obsessively think about it and seek it out for stockpiling! The difference again is that persons in pain, daily chronic pain; don’t want to take it and they don’t think about it. Their bodies may be physically dependent on the Opioids, but their brains couldn’t despise them more! But don’t misunderstand me please! The pain patient is grateful for this medication that will give them relief! Also please note that relief is very different from a high!

This proposed tax is ludicrous and just crazy!  It will increase the suffering of those who already suffer every single day of their lives!! I have noticed that many persons who’ve lost someone that they love due to an overdose; are supporting this proposed tax! I have lost someone I cared about due to an overdose! Though I’d never dream of punishing others because of my inner pain! Chronic pain patients did not kill my friend years ago! My friend didn’t act responsibly, took more pills than what was prescribed for her and killed herself by accident! 

Don’t punish chronic pain patients, cancer patients, persons with MS, RA, Degenerative Disc Disease, failed back syndrome, Complex Regional Pain Syndrome, Arnold Chiari Malformation and /or many other illnesses that can cause sometimes unbearable daily pain! It’s not American! It’s not right or fair and it will not help anyone except for the Government and the addiction treatment centers!

Please go to my Facebook page called “People In Pain Unite” to get more information on this Proposed tax. Please place “#peopleinpainunite” on everything that you write or post against this tax or against the “Lifeboat Act”! Please help us by writing to your Senators and the Senators listed on my Facebook page called  “People In Pain Unite”! Write letters to your  Governors, and even to President Obama.  Please watch my videoes below, to get a few minutes of information regarding this “Budgeting for Opioid Addiction Treatment Act”! See how YOU CAN HELP US!!  Help us STOP THIS ACT/TAX before it even begins!! Lastly, please SHARE and contine to share this post, my Facebook page and these videos!

Thank you so much for your time! Lastly, please sign the petition named in the photo below. Go to that website and sign this petition to STOP this “Lifeboat Tax”!

A Letter From your CRPS


Hello Luvs,

I found this letter  on a CRPS support group. I never take from another site without giving credit to the author.  But this one says “author unknown”. I would like to give my fellow Chronic pain warrior, Sara W. Credit for finding it and posting it. I wasn’t sure if she’d want her name posted on my blog, so I only posted her first name and last initial for now unless or until I hear differently. I know we are all here to help each other and all of you! This was a pretty accurate description of this horribly painful disease or Neuro-Autoimmune disease! So here it is…& please feel free to share if it will help you to let your family and other healthy friends and family members to understand CRPS  (Complex Regional Pain Syndrome) better:


Hi. My name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.

I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.

I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyway I please. And, I will. Constantly.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.

I can make you literally scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.

I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.

Some of my other inflammatory disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.

I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.

Shortness of breath or “air hunger?” Yep, probably me.

Bone density problems?

Can’t regulate body temp and poor circulation?

Constant ‘electric jolts’? Yep, probably me.

I told you the list was endless.

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.

I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.

They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

Author Unknown 

From ASL Interpreter To Hearing Impaired in 10 seconds


Hello Luvs,

I truly try not to complain or ask for help often; but I’m having a rough pain night… When I feel like this I find something that makes me feel good and I try to do it, read it, play it, sing it, sign it Etc. Tonight I can’t sign it so I watched myself sign the ASL cover for @Hold On” by Wilson Phillips… It did make me feel a little better if only for 3-4 minutes. Then I thought that I would share it with you! Because if I’m having a rough night, others must be as well. You see, I’ve tried to make some lemonade when life’s tosses lemons at me!

I used to be a sign language interpreter for the Deaf . I graduated from university with my degree in “Sign language studies / Interpreting”. I was a single mom (but I’ve been remarried now almost 20 yrs to my soul mate), worked full time at university of Michigan hospitals as an interpreter for patient services. I interpreted for Deaf students at 2 school systems “Magnet” Hearing impaired programs & at Madonna University in the classrooms.

In 2002 when a man ran a red light I lost so much: not only was my car totaled, but my body & my career. I suffer from chronic intractable pain. I’ve had multiple injuries, surgeries (8), a heart attack and a stroke! I suffer from Dysautonomia / POTS / Autonomic Neuropathy, polyneuropathy in Collagen Vascular disease(like the vascular EDS), Arnold Chiari I, Sick Sinus Syndrome (with a pacemaker), S.C.I.D. (severe combined Immune Deficiency disease), RA ,OA & the worst is CRPS, or aka “Complex Regional pain syndrome”. The CRPS started in my right foot after a surgery. It then spread to my right knee, left foot & knee.

In 2013 I had what was supposed to be a simple pacemaker replacement surgery. It turned into a long & difficult pacemaker and pectoral muscle rebuild surgery! Afterwards at my 6 week post-op check up, my CRPS was reassessed  by my Neuro-Cardiologist. He said that it had progressed to” full body/systemic CRPS, severe & disseminated”.

My career was taken from me! I also suffered a TBI in the car accident and was in brain injury rehab for 3 yrs! Id been an Interpreter for the Deaf & Blind and now I’m hearing impaired & I have 2 hearing aids. I can’t process signals of spoken language the same as I could.  My brain isn’t able to switch the words into another language whilst coming out of my hands & arms any longer. That connection was gone or at least now too slow for interpreting!

My short term memory is “in the toilet”, according to my neuro-psych tests. My love and compassion for helping people, especially children, is still  in my heart but the injuries stole my career from me. I was so very sad! Then I thought “how lucky that it’s me because I know ASL fluently, I can read lips well & my long term memory is in tact. I remember all of the signs! Artistic ASL is emotional and beautiful. It has awakened the “old days” for me when I lived in Az & worked at school for the Deaf with Deaf pre-schoolers! It has reminded me of when I was involved in 2 Drama groups w/choreography in ASL to songs! One was called “Silent Impressions Productions”, we put on shows at ASU! The other group was called “Silent Praise”, & we Interpreted at church, did interpretive dancing & signed to beautiful songs at the Neumann center at ASU! I was lucky to still have my gift yet in a different way. Watching  songs done in artistic ASL is emotional and so beautiful.

I started signing beautiful songs again, which made something wonderful stir         inside of me once more & brought the sparkle back to my eyes!

I started a “You Tube” page (ASLSuzyQ) and a facebook page (I Luv ASL) for my ASL songs. thought that if I could be cheered up …then maybe I could cheer up others who are hurting, sad or both? So “Hold On”…Don’t give up and watch this & maybe, just maybe it’ll cheer you too!

https://youtu.be/cjrMvKpxge0