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

Hope Is A Verb


img_7869We all lose hope at some point in our lifetime or another. We get sad and start feeling hopeless when too many things happen all at once; that we consider to be “bad”, hurtful or depressing. We may start to feel overwhelmed and this causes some of us to lose hope. Sometimes it is the way we feel inside because of something or some “things” that others have said or done to us or said about us.  Certain words or situations might hurt our feelings or even our ego possibly? The holidays seem to bring about an overabundance of  feelings, situations and even hopelessness. At a time when Charles Dickens’ ghosts would be telling us that we need to learn from our past, live in the present and look forward to our futures. It’s not as easy as it seems. Even the Hallmark Christmas stories, have characters who, by the end of the story, are healthy, happy and hopeful. Those of us living with daily chronic pain are not immune to the difficult, hopeless feeling situations that actually multiply for us during the holidays. You see, we get these feelings on top of  debilitating pain and most often, that brings with it, several illnesses and disabilities.

You might say to yourself, “What is she talking about? Why is she writing such a “downer” as this, during what most see as a happy time of year?” I’ll tell you what I’m talking about. It is this 4 letter word “HOPE”. It can be anything you make it, if you just think about it for a moment. People want “HOPE” to be brought to them. They want it as a “gift” from God. Some others think of it as a noun or a “thing” that we are entitled to. But in my lifetime I have come to love this sometimes mysterious 4 letter word. It intrigues me so much that I wear it on a chain around my neck. I have worn HOPE around my neck for years and years. It is my favorite of all words.  I always thought that I’d get out of a bad situation if I just had “Hope”. Things will get better if I just keep “hoping”.  I always thought that if I continue to wear my “Hope” necklace, then one day I will have “HOPE”; the noun, the “thing” that others seem to have.

But I did not “get” HOPE because you cannot wait for it, for the noun or the “thing” to come to you. I have learned that “HOPE” is a verb. A verb is an “action” word.  I have found that HOPE is also an action word and you have to DO something in order to have and keep HOPE! If you keep waiting for it to come to you, that is when you will lose it. For example; as a chronic pain patient, in order to find a good Dr., one whom you trust and respect; you must continue to look. You can’t sit back and “HOPE” that others will find the Dr. for you. You must do the work of looking, hunting on the internet and reading the different reviews about many many physicians. You might have to do the tedious work of going to 3, 4 or even 5 different Dr’s before you find the right “fit” for you. But after you do the actions, then you can receive the “HOPE”.  It will be rewarding to actively do the “work” or the job of looking for and getting what you want or need for yourself. Along with this comes the feeling of accomplishment and when you put those things together, you will feel more secure, happy and hopeful.  See how it works? If you choose to do nothing, feel sorry for yourself most of the time, and let others do it all for you; then there cannot be much HOPE. If you try your best and keep making the end goal of having and keeping HOPE; making it a verb and doing the actions; I think you will be surprised at how much better you feel inside.I’m not saying that you can never feel sad, loss or grief.  It is OK to feel sad sometimes, as long as you can get yourself back in time, before the loss of hope comes.

I have an example for you, and it just happened to me during these past few weeks.  I was feeling sorry for myself and a bit hopeless. Silly as it seems, I had taken off my “HOPE” necklace and everything just appeared to be a bit bleak. I was experiencing higher pain levels because we live in Michigan and it’s been so very cold. I don’t like going out much or at all during this part of the year because of the higher pain levels along with extreme cold. But I do want to go out, because this is my favorite season of  helping others, HOPEfulness and cheer. I love the lights, the music and the Christmas trees. I usually feel happier even when staying inside with my cat in my warm, cozy chair. I enjoy drinking something hot and watching the overly dramatic Christmas movies. But these past few weeks I had been feeling down and a bit hopeless.  I was feeling that I was trying even when I didn’t feel good enough to try anymore. I continued “doing” when I didn’t feel well enough to do the things that I just wanted to do.  But I was adamant about doing those things anyways. I realized that you must stop and take a time out, when you need one. It’s OK to be sad for awhile, but just when you feel that HOPE is lost, that is when you are keeping it as a noun and something that is given to you. But things will turn around when you remember to keep HOPE as a verb. Keep it as an action word and one in which you have to do something in order to have it. When you make HOPE a verb,something always happens to change the negative feelings in your life.

Just when my HOPE was draining, I received a large envelope in the mail.  Inside was a blue folder with the seal of Michigan on it. When I opened it, I started to cry and I was ecstatic. What I held in my hands was a “Special Tribute” from the Michigan House of Representatives  and from the Governor,  Rick Snyder!  I’ll Post a photo of the “Special Tribute” here so that you can read it. I have been rewarded when I have never asked for any rewards. I received a special tribute for the advocacy work that I do and my “compassion for others”.  I don’t have any idea where it originated?  I know who signed it and sent it to me; but what, how, why me?  All I know is that I was feeling down and tired of constant pain, even though my pain is somewhat controlled. I was losing HOPE because I was waiting for someone to give it to me. I had to remember again, that it is an action of “doing something”. Though I did receive something in the mail that truly cheered up my spirits. In the end, I did something to make it happen.

Don’t lose hope because it’s not something you can “hold or touch”; it’s something that you “DO” or “act upon”. My hero was an Advocate, Helen Keller.  She was blind and Deaf, but she never gave up. She was tenacious and I strive to be like her. Especially in that I’d gone to University to be an Interpreter for the Deaf and blind. I worked at a major Hospital as an Interpreter and at magnet schools for hearing impaired children. Then, in 2002, my car was hit by a man who ran through a red light. I won’t go into the multiple injuries and surgeries. But I will tell you how ironic it was/is that I am fluent in American Sign Language. Deaf culture & ASL have always been something that I love.  As a result of the car accident, I also suffered a “Traumatic Brain Injury”.  Part of that includes hearing loss and vision issues. I have a convergence insufficiency, chronic dry eye, my own hearing aids and prescription eye drops that I must use on a daily basis in order to keep from going blind.

Whenever I feel that I’m losing HOPE, I remember all that I have been through and all that I still CAN do. I try to remember to never stop doing the actions that keep my HOPE alive. Lack of action makes hope die and that is when I remember what my “hero”, Helen Keller, once said: “Your success and happiness lies in you.  Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”

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Respectfully And Humbly Health Advocate Decides Not To Pursue Awards


2019

Hello Luvs,

If you see the pictures on this page you will notice that I was or have been nominated for a few, “WEGO health Activist Awards” this year for 2016. I was really excited to find out this news. I mean, I worked really hard this year and it’s such a “high” to think that someone thought inspired enough about the things that I have been doing all year.  I was nominated for: Best in show: BLOG …for THIS BLOG….now that is pretty cool, right?!  Next up is: Best in show : Instagram, Twitter, Facebook and Pinterest. How fun is this, right?

Well, it might be fun, or it might not? I never mind the hard work part. I love social media, computers, gadgets,  and technology in general. But I remember a few years ago, when I was a finalist for the “unsung hero” award. I realized that just being nominated was exciting. Becoming a finalist was very fun.  I humbly and gracefully accept these nominations. But I am respectfully pulling myself out of this “game”.

I have been a health advocate since 2005. I started out a Chemo-Angel and I’m still in that program. I am a Card Angel, Chemo-Angel, prayer angel, and special assignment angel for the program. When I got Diagnosed with RSD/CRPS in 2007, RSDHOPE.org put me in touch with a “mentor”. This was someone who’d had the diagnosis much longer and could answer my questions and just sort of “take me under their wing”. Later, I became a Mentor for newly Dx CRPS patients, myself; and have been one ever since that time.

I have always worked alone, never really a part of any big group or “family”. I was part of the Orsini family at RSDHOPE.org, since 2007. I still worked alone, made up my own awareness events, and started my own fundraisers. In 2014, I made several RSD/CRPS bracelets. I raffled them off during the month of CRPS Awareness, which is November. I made $250 and sent it in to RSDHOPE.org..   Mom Orsini was so kind and thankful, I’ll never forget her kindness.

So now I have joined a bigger “family” and it is the U.S. Pain Foundation. I joined this group, this wonderful, loving and kind group of fellow “Pain Warriors” just last year in 2015.  I love being a part of the U.S. Pain Foundation family.  We look out for each other, and they look out for me. My husband and I went to their advocacy retreat in August, this Summer 2016. I/We had  some of the most awesome times of  our lives. We made real lasting friends and memories to cherish. I have found my little places in the pain world and they are with the  U.S. Pain Foundation and RSDSA. I have more than enough to keep me busy and they always tell us to “take care of ourselves first”. We cannot be any good for anyone else, if we aren’t taking care of ourselves first.

I have great respect for the people and the organization at WEGO Health. I have done some research for them this year and enjoyed the online discussions afterwards. I got to meet “Julie” and I have become close to her. I would and will always help them at any time they need an extra set of eyes, hands or ears. I feel like our organizations together can empower pain patients by working side by side and giving a sense of “belonging”. This then makes us feel less alone on our pain journey.

I am very proud that WEGO health recognizes health activists and advocates annualy. But I am very happy to have been nominated because that nomination alone is a little bit of validation that I am inspiring someone and/or making a difference. To me, this is my “winning”.  I want to do wonderful things and help the underdog, the sick, the people with chronic pain and invisible illnesses. I honestly, do not want to spend my time getting people to vote for me so that I can “win” an award. I have my “win” and it’s in my heart and soul. My “win” is hopefully that I’m helping others like myself. I pray that I am spreading HOPE and even inspiring others. We need to keep HOPE alive in order to make sense of some of the outrageous things that have happened lately in the world of chronic pain patients. We cannot let things turn dark or lose HOPE. We have each other and together we are empowered and we are strong.  This nomination is enough for me and I thank you so much for those because that is my win, just being nominated.

This month was very busy and the next few months are going to be very busy for me. I have full body /systemic CRPS, along with many other health and pain issues from “A to Z”.  I need to put my energy into raising awareness for Chronic pain and for U.S. Pain Foundation. Spreading optimism and positive energy is where I wish to be. I will also be very busy with the quickly approaching  month of NOVEMBER. It is the month of spreading awareness for my invisible most painful illness of Systemic CRPS! I will be on the front lines with RSDSA, raising awareness and hopefully fundraising for them during this upcoming November 2016. As I’ve said before, “HOPE” is a verb.  You must DO SOMETHING in order to have it. Then you must continue to do something in order to keep HOPE ALIVE. I just prefer to spend my time helping others, tweeting, writing and blogging for the pain community and the RSD/CRPS community. I don’t want to spend my time begging for votes from people and bothering everyone I know to vote for me every day so that I may be recognized or “win” something. I am winning now. I am winning half the battle just by trying to be as kind and loving as I can to all people I meet. I am winning by spreading awareness and optimism and Hope. If I can keep one person’s HOPE alive, then I have already won. If I can keep my HOPE going along with it, that ‘s all the better!

Thank you so much everyone for your kind words and your faithfulness. Thank you for these nominations below and I will wear them with pride. I want to keep inspiring and winning the war against stigma of invisible illnesses and chronic pain patients. I want to fight against our losses in the medication issues we face now days. This is where I want to focus my little bits of energy each day. I want to stay focused on the issues stated above and  not on myself and “me, me, me” . I prefer to focus on YOU, my chronic pain family  and on my darling  very young granddaughters.  With these I have JOY along with HOPE and that is the best of both worlds for a chronic pain patient. I thank you again and I humbly want to withdraw from the WEGO Health awards 2016. Good Luck everyone.

 

Canton woman is a pain warrior


Joanne Maliszewski, jhometownlife.com 5:31 p.m. EDT September 9, 2016

Suzanne Stewart of Canton lives in pain – all of the time. And she knows plenty of others who share a similar lifestyle.

“It’s up there with cancer, childbirth and amputation of a finger without anesthesia,” said Stewart who suffers from a nerve or Neuro-autoimmune disease (RSD/CRPS). She also lives with: Chiari, R.A., O.A., Degenerative Disc Disease, Dysautonomia/POTS, Polyneuropathy in Collagen a Vascular Disease (= to EDS type 4,Vascular) and other issues.

As an ambassador for the U.S. Pain Foundation, Stewart – who attended an educational retreat in August – has a host of events and displays this month in Canton to spread awareness of living in chronic pain. The U.S. Pain Foundation serves as advocates for pain management through a variety of methods, including medicines.

Stewart’s life of pain began following an auto accident in 2002, which led to eight surgeries. She has since had a pacemaker installed, has had a stroke and heart attack all by her current 54 years of age. “One in three Americans lives in chronic pain,” Stewart said.

Suzanne Stewart and her husband, Craig, showing the
Suzanne Stewart and her husband, Craig, showing the display for awareness of chronic pain. (Photo: Submitted)
As a result of the auto accident, Stewart suffered nerve damage – a cause of much of her continuing pain. At times she is in a wheelchair, other times she uses a walker or a cane. She suffers continual swelling on her left side and has lesions from one of the autoimmune diseases.

As society fights against some types of prescriptions, Stewart wants the public to know that those medicines are necessary for her and others with chronic pain, to live their lives. She also wants the public to know that while no one can see her chronic pain, it’s there and it is very real. Offering an example, Stewart said she has a handicapped permit for her car. But she has had people gawk at her and question her because she does not look ill or handicapped.

“They don’t see it, but I can feel it,” Stewart said.

That has led to her making fliers and signs that say, “People with pain matter,” because she urges others to avoid judging those who live as she has to. “Don’t judge what you cannot see,” she added.

As part of increasing awareness and understanding, the U.S. Pain Foundation has kicked off a project asking those with chronic pain to send in their stories. “It’s really more of creating an understanding,” Stewart said.

Locally and for starters, Stewart has a display in the Canton Public Library through Sept. 16. It’s a display of facts and information about chronic pain and awareness, as well as information about he U.S. Pain Foundation and additional data about RSD/CRPS, the autoimmune diseases from which she suffers.

On Tuesday, Sept. 13, she will attend the Canton Township Board of Trustees’ meeting to accept a proclamation designating September as “Pain Awareness Month.”

Other activities will include:

Wal-Mart in Canton, store No. 3476 on Ford Road: 1-3 p.m., spreading awareness of chronic pain with items from the U.S. Pain Foundation.
Monday, Sept. 12 from 10 a.m.-noon, Stewart will have a booth for “Senior Day” at the Canton Summit ..She will hand out items to increase awareness, as well as offering 400 bags of information and items for Seniors.
Stewart also plans to fundraise for the pain foundation and plans Someday, to head to Washington D.C. to meet with officials of individual states to raise awareness and to make changes for people living in pain, she said.

 

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original article is here:  http://www.hometownlife.com/story/news/2016/09/09/canton-woman-pain-warrior/90134682/

 

 

The USPainSummit 2016, An Experience To Remember


Photo Aug 12, 5 18 28 PMPhoto Aug 05, 8 08 19 PM (1)Photo Aug 08, 6 44 25 PMPhoto Aug 06, 11 08 50 AMPhoto Aug 04, 8 41 19 PMPhoto Aug 06, 11 49 02 AMPhoto Aug 05, 10 38 37 AM (1)Photo Aug 05, 6 22 53 PM (1)      We arrived at the University of New England in Biddeford, ME on Thursday evening, just as people were sitting down to dinner.  Due to some special health needs that I have, we had driven for 2 days to get there. It was during the final phase of our drive, that there was a terrible truck accident on the 495. Traffic was halted for 2 hours on both sides of the highway and people were getting out of their cars to see what going on. We turned on the Am radio to find out about the reason(s) for the fact that both sides of the freeway were cleared and stopped.  Then we saw a medical helicopter come and touch down on the other side to pick up hurt passengers and drivers possibly. We were praying with other drivers that the people would be all right. I was a bit worried about getting to UNE, but not as worried as I was for those poor people who were injured or worse. We were talking with other people who’d gotten out of their cars and we even prayed with them for the safety of those involved.

We finally were traveling again and arrived at the University safely. Instantly, I started looking for the friends that I’d longed to see for so many years. Frantically texting them, I was wondering where they were and what they were doing?  These girls and I had started group texting along the journey to keep our spirits up, take care of each other and keep tabs on our friends. Flora and others came to my rescue! They took my husband and me to the dining hall so that we would not miss dinner. I first found Christa, the one I call my “adopted daughter”. She has called me “Mama” for many years and we have become very close over time. Christa and Flora made sure that I had a place to sit with them as Heather came up and gave me a gentle yet wonderful hug. I got to meet Jaclyn, who I’d been excited to meet and get to know better. I was so happy to see all of them,  I could barely hold back the tears of excitement that the moment had finally arrived. I met Barbara, Crystal, Melanie and her mom, Laurie. I finally got to meet Casey, and then Paul and saw so many other familiar faces that I would get to know throughout this most awesome weekend. We went to the hospitality suite after dinner and that’s where we got checked in, and collected the shirts that USPain gave us to wear during each day of the Summit. There was a feeling of comaraderie like no other as I met each new person, whose names I mostly knew. All of these people were fighting their pain, to come together on this first night.  Most of us were running on Adrenalin & excitement after having traveled far and wide to arrive at this retreat. We then went to bed and tried to recover a bit before the weekend ahead.

Friday morning couldn’t come fast enough for me. We all arrived and were sat in a big theater/lecture room. First of all, I thought it was great that they gave us all water bottles in our USPain “bag of goodies” as we checked in. There was concern for us staying hydrated because water, coffee, lemonade and teas were readily available outside the lecture hall door. There was also a variety of fruits, cookies and some Nutri-grain bars. While walking in, you could see that this group was set up to “look out” for us and each other. The first day there was a couch to provide for the special needs of one of the chronic pain patients. Blankets were available to us because it was very chilly in the lecture hall.  After the first day, Paul Gileno, Casey and others made sure that more blankets were available.  Then additional couches, and chairs were brought in for others who also needed some extra comfort. This was done so that we could all be  able to stay and listen, rather than have to get up and rest someplace else. They saw a need and they took great care of us.

Up first, Paul Gileno spoke as he Welcomed us as a “family” and introduced himself. He spoke about his own journey with chronic pain.  Paul explained the meaning behind the color “blue” for the USPain Foundation and why he started it. We were waiting for some deep meaning behind the color, but Paul told us as he chuckled, that it was “just because he likes the color blue”. Next he was awarded a beautiful hand carved Cane with Blue accents on it. There are no words to describe the beauty of this cane; also the love and inspiration it took to create. I am in awe of the talent and Artistry of a fellow Chronic pain patient named “Ernie”. Paul said that the cane will be everywhere USPain Foundation goes, to remind everyone that #peoplewithpainmatter. I can’t remember everything that was said, but he said something about how people with pain are so creative and still useful persons in society with aspirations, talents and dreams. Either way I know he is very proud of that cane and he did positively say that it would be taken with him to every USPain function.

Next up was Shaina and she spoke of compassion and respect for each other. She explained that advocates need to continue to write letters to lawmakers.  She told us “take care of yourself first”;  and added that our caregivers support us and they also need support.  We need to work with and continue to network with fellow pain warriors.  We started after this, talking about “mind, body and spirit”….What we do to get our mind off of the pain?

Then another pain warrior came up to speak and it was Cindy Steinberg. She spoke about advocacy. She said that like Ghandi once said “We need to be the change we want to see in the world”. She explained that one way to make change is to be the changing force. Use Social Media, Public speaking, meetings, rallies, Television and public hearings. There have been successes in these kinds of advocacy outreaches. One of which is the Bill in Massachusetts regarding Opioids.  The Bill stated at first that persons with pain were “only allowed 3 days of Opioids no matter what!!!  “They pulled people together; groups rallied behind each other and they said “that’s nuts”! They got the Bill to have an “exception for Chronic pain, Cancer and Post Operative pain!” It was a victory in the corner of people suffering with chronic pain.  We next spoke about “Step Therapy” and that CT 2014 hurts patients. Step therapy is in my understanding, where you start at the bottom and they try everything cheap and you have to “fail” that in order to get to try something else that might cost insurers more money. Essentially it is used by insurers to control cost. Next Cindy spoke about the “National Pain Strategy”, it’s a comprehensive plan to help pain patients.

Next, Tiffany introduced our panel of 3 lovely women, that I could really relate to. These women were: Ellen, Juliana and Wendy.  They spoke about advocacy and “What makes for successful advocacy?” They went on to say “Why do you think your story is important? When you  speak say that, be authentic and keep it real. They said that in being an advocate, one good way to start a conversation is to start out by stating something that everyone has felt or is familiar with. You can start with saying “just imagine you wake up every day feeling like you have the flu”? The three of them also explained that advocates need to get the media to know us.  Other tips were:  “Tell your story because that’s how you make a personal connection. Your story does make a difference.  Along with helping others in pain, you are helping yourself”.  They went on to explain the best way to talk to a Senator or state Representative. “Let your story grab them, if not visible make them visible”. They coached us to write letters, explain and allow Dr.’s to know how we feel.

Next up was a representative from the Pfizer drug company, Barbara Phillips. She discussed how “Opioid prescriptions have tripled”. (*Side note:  In my opinion, the amount of Dr.’s treating chronic pain has gone up. The use of Opioids, I believe has risen due to the fact that more people seek treatment for chronic pain, the medications have low side effects and are more readily available; or they were before this pandemonium. For example in the 50’s and 60’s, the use of antibiotics went way up. It’s because they were more readily available to help people.  We are getting “lumped together” with people who are “addicted” and not medically dependent on the Opioids for relief of chronic pain). Ms. Phillips says that the education regarding chronic pain, for Primary care Dr’s is almost non existent. The Medical Dr.s only get approximately 9 hours of education and training with helping chronic pain. But the Canadian Veterinary Dr’s get a whopping 87 hours of training with chronic pain for animals. She explained chronic pain as being “the 5th vital sign”. She talked about the differences between acute and chronic pain and said that PCP’s don’t understand chronic pain.

Later, Ms. Phillips went on to discuss the different kinds of pain, which are: Nociceptive Pain (bone fractures, sprains, burns, bumps and infectious or arthritic disorders), Neuropathic Pain (Post shingles nerve pain, RSD/CRPS/Causalgia, cancer pain, phantom limb pain and Peripheral Neuropathy, which is widespread nerve pain such as Diabetics live with).  Then there is a third type of pain called “Mixed Pain”, which is similar to Fibromyalgia etc. She says that assessing and managing pain is easier after identifying which kind of pain you have. She talked about why she feels that “Opioids are over prescribed”. Ms. Phillips believes that Opioids were an “easy script for Dr.’s to write, and they underestimated the risk to patients taking them”.  It is difficult to asses patient risk (use, misuse, diversion). In Misuse she explains that she meant “taking more than the prescribed amount”. In Abuse, she referred to “using it only for euphoria” and by Diversion, she explains “removing the Opioids by sharing of them with family members etc.” She also talked a bit about Abuse deterrent Opioids with the agonist/antagonist approach; and there was some educational information regarding Opioid use. She ended with her fact “that 50-80% of Opioid deaths come from chronic pain”.

After Barbara Phillips from Pfizer was finished speaking, we got to meet Senator Hill from Maine. She was delightful in that she got my attention and my admiration right away when she spoke of her love for animals. I love animals and feel the same way, so it got to my heart right away. Sen. Hill discussed the importance of advocacy and how its “scary” to campaign and go to the Capitol. She said that while legislators are “scary”, they’re just “regular people”.  We need to “get up front, don’t be afraid to talk and go tell your story”. She also said that if you are “up against the clock, have your testimony in writing”. In giving us some good advice, she told us that they prefer to have the testimonies be about one page. Make bullet points and try not to or DON’T say the same things as others have said! They want to hear true, real, honest stories. She stressed that we should try really hard not to repeat. I’m talking about if you are going to lobby, you should be a real person and tell your real story; push the point.

Some people got up and asked questions and spoke out. The chronic pain patients said “What do we do to teach lawmakers about the importance of Opioids when needed?” In my opinion, they are all right to be used sometimes. She said she would want to hear “how we really need it but give suggestions on how we’d not allow others to misuse it.  Come and tell her how it helps you but how to regulate it for those who misuse it.” I am thinking, why is it up to the chronic pain patient to figure out how to make other persons not misuse the Opiods? We talked about “splitting it into two issues”.  It’s not only one issue and we are being put in the same group together with those who are abusing the medications. Senator Hills’ eyes became widened and she spoke out and said “Nobody’s ever said that before”, and we do need to split it into two groups! I’m saying that we aren’t “addicted” but physically dependent! We don’t get a “high” from the Opioids. If you ask 99% of the chronic pain patients, we will tell you that we do NOT want to take this medication. We wish that we did not need it to help with our pain. But the fact remains, that it DOES help some of us! She instructed us to meet in and start with our own districts’ Health and Human services community. Her information was very invaluable in that she gave bullet points to us in how to be a better advocate. Here are a few of them:

  • Pick an issue and narrow it down….prepare and build from that!
  • Go to your own house and federal people in your own state
  • ADVOCACY:  step #1 is to impact change- know your basics and bullet points (know the different parts of the govt. such as: the local and state and then the federal government; which is: Legislative, executive and judicial
  • Congress is responsible for passing legislation. Each state has 2 senators and you should get acquainted with them. You can visit: congress.org and house.gov or senate.gov
  • Take advantage of short meetings.  Be ready and be direct! For example: go to candidate meetings, town meetings.  Call and make yourself available and use Social Media whenever possible

Then after Senator Hill was finished, Shaina came back up and told us to learn about issues on USPainfoundation.org. Take what you know and what you have learned and try to make a difference.  Share your story in that you can write a letter to the editor of your town’s Newspaper (to go to the correct person, look on UsPain.org). Shaina made us all laugh and giggle when she told us that “she wants to help” and it’s OK to “bug her”!

After lunch, we came back to an afternoon discussing “how to tell your story”.    We must remember that so many of us, those with chronic pain can still do some beautiful and productive things. For example there were people there who’d made beautiful jewelry, and how about that gorgeous hand carved cane that Ernie gave to Paul at the beginning? We do have something to give!  Also as far as getting our story out there, it was reiterated that when Public speaking to lawmakers or while testifying; write down short ideas ahead of time. You don’t need to memorize because they want to hear from your heart. You usually only have about 2 minutes to talk, so make sure you know what the US Pain foundation is, and bring copies with you. Did you know that US Pain foundation has 100,000 members?  Get resources from US Pain Foundation and “BUG” Shaina! LOL….

Regarding the Federal government, for example the FDA, you’ll have a more “polished” audience and only 2 minutes to speak. You’ll get a warning sound when your time is almost up and then they just cut you off! You need to have paper and write down what you want to say.  Get it down to 2 minutes! Your story is very important!! If you do use facts, please make sure they are correct, accurate. Regarding the State government, you’re testifying in a less formal manner. You’ll more or less be in front of a committee.  Keep eye contact, keep to your personal story and your bullet points! Try to explain your disability and always arrive early when you testify.

After all of these discussions were finished, we heard from Dr. Edward Bilsky, a professor at University of New England.  He had a Pharmacological approach and a scientists approach to the Opioid misuse. He was in agreement and supports the National Pain strategy.  He discussed that he feels that “Opioids don’t help chronic pain”. In talking about some of the Abuse deterrent drugs, he said that “Naltrexone stops cravings”. He feels that “the problem is not one of  addiction so much as it is of a misuse issue.” He went on to say that 2.5 million Americans meet the criteria for Opioid misuse. He called Opioids, “Heroin”.  I really admired Dr. Bilsky and he made some very good points. He’s a very intelligent professor and I got the impression that he was a “family man” and “trying to help”.  But I must give my opinion here, right? This is my blog and I have a right to my opinion in a respectful manner. My opinion is that Opioids have helped me over the past 14 years. I’ve actually gone down in my amount of medications, because I wanted to partly, and then because I was forced to later on. The medications do lessen my pain, though as my Pain Management physician says, “he cannot take the pain away, but only help to make is less”. I don’t feel that Opioids are “Heroin”. I feel that my Opioids, lessen my pain and I have never “craved” them. If someone asked me, I would tell them that I do NOT want to take this medicine. I have done all that has been asked of me and not much has helped my multiple, real pain issues and diagnosis’.

The part that was the most fun, was Friday night. We had a Lobster bake out by the beach and the ocean! It was an awesome sight and the man cooking the lobsters opened up the foil coverings to show me the display of many many lobsters cooking over a fire grill! We ate together with 50 other US Pain Foundation ambassadors from across the country. People were laughing, having fun and taking lots of photos.  Dr Bilsky was there and was a part of it all with us. I did not have to agree with all that he said, because I look up to him as a Mentor who knows different things about this than I do. I can only say what is in my heart and my head, and how I feel. I think he would respect that too.

We went down towards the beach after eating Lobster, corn on the cob, potatoes and some wonderful strawberry shortcake for dessert (with real whipped cream on top!).  My husband, my friends and I laughed, talked, cried and took action shots.  We pretended to be “US Pain Angel’s” in parody with “Charlies’ Angels” (*well, not my husband….LOL, he took the photos). It was good for our hearts, minds and souls; to be around people whom we have known for so many years, but never have had the chance to meet in person. I felt a quote from the “Grinch” book come to mind in that “my heart grew 3 sizes” that night. My heart did grow on this trip. I felt love, friendship and comradeship with these people who were like me in so many ways.  We may be from different sides of the Country, but we all took care of each other and watched out for each other. We made lasting friendships with the new persons that we met. It was an awesome sight to see people exchanging social media names with each other, phone numbers and contact info.

Day #2 of the pain Summit was about getting people to sign and support the Ntl. Pain Strategy. Cindy Steinberg spoke about this and then spoke about CARA- comprehensive addiction and recovery act of 2016.  We learned about the Federal Pain Research Strategy- a systemic plan for future pain research.  We found out that if you want to learn more about this “Non medical switching”, you can watch You Tube videos about it.  Research shows that Non medical switching leads to worsening side effects and conditions.  When the insurance payers just decide to switch medicine on people, it’s usually without the knowledge of the persons attending physician! There are 42% more E.R. visits with a 12% higher rate of outpatient visits as well. Shaina was explaining that “Biosimilars can have bad side effects versus Biomedics”.  They want to give us cheaper and less effective drugs. “They” meaning insurance companies.  We need to speak out and restrict “Biosimilar drugs”

We discussed “Step therapy” and how it is terrible for 67% of patients. They end up waiting for help as they get more sick and go through withdrawals sometimes. There is a recent article in the American Journal of Medicine about “Step Therapy”.  Then we moved on to “Abuse deterrent therapies”. It is an interesting new technology, in that the drug companies make the medications impossible to crush, chew or melt; in order to get a “high”.  This also deters people from using it for the wrong reasons or selling it on the streets. A place to get information is: WWW.Painconnection.org and their phone number is: 1-800-920-0664.  Their FAX # is:  1-800-910-6951.

At the end of the day, we got some useful information on Bill tracking/legislative tracking.  We use this to find legislation on a certain issue; to learn about and track it.  You can visit WWW.uspainfoundation.org, and go to “Bill Tracking” and track by state and /or by issue.  The top right corner of the page tell us how many bills are going through right now.  You can go there to find the Bill title, Bill sponsor and the status of the Bill.

As you can probably see, by the second day, I was in more pain and could not focus quite as much. I tried to take notes as best I could. I was so impressed by the actions of Paul, Casey, Shaina and whoever else helped us.  Many of us, the pain patients who were in attendance, were very cold and very much suffering with a lot of pain, due to the extra traveling, unfamiliar surroundings for sleeping and having to be up and listening intently for such long periods of time. I know for myself, I’m on Disability and just not able to do things for very long periods of time.  They took the time to listen to us and got more blankets.  They brought in extra couches & chairs to give more people a place to rest and still take part in the conference.

All it takes is a kind gesture from someone else sometimes to make us feel cared about, and our pain acknowledged.  Just the fact that someone notices our needs or takes care of our wants  at times, really makes us feel good or at least better, even if it is feeling better inside of our own skin. There was a time during the conference when I was starting to fade. I was not feeling good and my pain was higher than usual.  I was so grateful to Paul, Casey, Shaina and the others who got the extra chairs etc., so that I could spread out a bit. At one point, Casey was in front of the room and she looked over at me. She could tell that I was not feeling very good. Mostly, you can see it my face when my skin turns more pale and I stop being the animated person that I usually am. Casey gave me a certain nod and smile; a glance to let me know that she knew and she cared. It meant the world to me!  Then Christa,(my “adopted daughter ” all of these years, whom I finally got to meet at this conference) who was sitting next to me in another chair with her legs also up on a different chair, took hold of my hand.  It was a feeling of friendship and deep feelings that one can only share with someone else who truly understands.  Then my husband and caregiver, Craig took my hand and I felt a rush of relief go through my body knowing that I had someone there with me who was in this with me for the long haul. As Ellen, another chronic pain patient, told me “we are lucky that we know a true connection and deep love, that others don’t get that lucky to experience”. I felt it again when Craig stood up to speak about care giving, after Stu had done such  a great speech on it. My husband got up in front of 50 Ambassadors, many other care givers and the administration of the US Pain Foundation, and professed his love for me. He spoke of how it is for him, on the other side feeling helpless sometimes. How he can only be there for me and how he “loves me so much”. It made me tear up and a rush of emotions ran through me as someone handed me a tissue.

That night we had a campfire, made S’mores and got to hang out with the neatest 13 year old boy I’ve ever met. He was “Ty” and he was the best.  How many 13 year old boys, would get up and get things so many times for all of these different people with pain? Ty did that and more. He brought me more soda and more cookies! He made me laugh at the fire pit and cry when I heard his mom read off all of his accomplishments to help children with pain. What a neat kid and one that any parent would be so proud to have.  I know that Casey is very proud of him. I am proud to know him and I know where he gets his strength and tenacity, we all do. I could see it in their interaction together, the mother/son bond is strong. Casey is someone who I was excited to meet and who became a close friend that weekend.

So many people that I felt a bond with that weekend. For about 54 hours, I had the pleasure of feeling a closeness in knowing that no one judged me and we all stood up for and looked out for each other. Nobody was left out and when I wanted to do a meaningful song in sign language, they found a way to let me do it in the hospitality suite on Saturday night.  The employee that was giving us soda and other drinks, had a blue tooth speaker. She hooked my iphone6 up to it and my song suddenly was loud enough for everyone to hear.  I used to be an Interpreter for the Deaf. Now, due to a MVA in 2002, I am Hearing impaired and have 2 hearing aids.  I don’t need to hear the words with the song together, because I learn the lyrics first and try to go with the music.  I got to do my “thing” that I CAN do. I am no longer able to Interpret, but I can do some artistic interpreting for a short period of time. I signed an ASL cover of the song “Stand in the Light” by Jordan Smith from the “Voice”. Sure, the music stopped a few times and it wasn’t perfect, but nobody cared. I got a round of applause and people told me it was “beautiful”. It made me feel so good. I remember, April came up and suggested that it be “the song” for the US Pain Foundation. How cool is that? I got to “do my thing”, but it was not for me alone; I wanted to give a “gift” to these people, these special friends that I had gotten to meet. To show my love for them and to express that we should still “be who we are, be true to ourselves; to stand in the light and be seen as we are”.

Thank you US Pain Foundation, for a beautiful, wonderful and memorable weekend. I got to make so many new friends and more whom I wish to get to know better. Craig and I made good friends with another couple who we felt bonded with, Stu and Ellen. I can’t wait for next year and I hope to be behind the scenes helping more, because I would love to be able to do more for those who are doing so much for us…thank you Paul,Casey, Shaina, Nicole, Lori and everyone at US Pain and everyone who was there…thank you so much!Photo Aug 04, 9 23 36 PM

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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.