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.

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..