Category: Stories of Hope

By Guest Blogger Barbara Wall, Power Over Pain of Arkansas

This is a success story from someone with RSD/CRPS that saw Dr. Katinka van der Merwe. To read our article on Dr. Katinka van der Merwe’s approach, click here.

I was living life and enjoying all things around me. I did not feel that I took much of anything for granted. In 2005, I suffered a severe injury to my cervical spine (broken neck) as well as other injuries. As if dealing with a broken neck was not enough I received the diagnosis of Reflex Sympathetic Dystrophy (RSD), today known as Complex Regional Pain Syndrome (CRPS). I had the opportunity to practice as a registered nurse for twenty five years. I was hoping to get beyond this illness and the acute daily pain in order to continue my professional career. I did absolutely everything the doctors ordered and pushed myself each and every day during physical therapy. After a host of medication changes and numerous stellate ganglion blocks, lumbar sympathetic blocks, and cervical epidural steroid injections my body did not go into remission. I was forced to quit a career I absolutely loved and began focusing on my health. Every day was full of appointments, disappointments, physical therapy, occupational and pool therapy.

I was able to establish a great team of medical doctors and felt comfortable with my care. The pain continued to overwhelm my mind and body. My family remained so supportive and encouraging, but I needed a strength so far greater than they could give. Each day was such a challenge, but with God, family, and my own inner strength I was able to wake up every morning and tell myself “I can and I will do this.” As days, months, and years passed by with constant pain, I was able to keep my attitude in the game of life and continue to fight this fight. I was finally approved for a spinal cord stimulator (SCS) and responded well to the three day trial. Months after the trial I was approved for a permanently implanted SCS. My quality of life was drastically improved and it gave me enough relief most days to continue my daily regime of physical therapy and two hours of pool therapy. We could not decrease any of my medication or I would have a setback. I totally relied on my SCS for pain control because I did not respond to narcotic medications.

I would define the past ten years with full body RSD as mind blowing, traumatic, overwhelming, and most of all changing. I have a great joy for life and all the wonderful opportunities it has to offer. Opportunities are not without work and living with this condition is work, hard work.

In June 2015, things would again change. Even though I continued to live with daily pain, that would also change. Yes, it changed for the worse. I made a simple movement with my neck and felt a horrible pop with lightning pain. I could not raise my head and the pain was intense. My SCS would not touch the pain which was unusual. After weeks of sleeplessness nights, severe pain, and diagnostic tests we found the culprit. I had damaged two of the discs in my neck and therefore, pushed my SCS paddle to the right. Because the paddle had shifted, I lost all coverage for pain on the left side. Now I had to decide what to do and how to treat this. My concerns were so overwhelming about surgery and the risk of exacerbating the RSD. My spine specialist was concerned about the surgery and the risks involved. We did not want to send my body into a state that would push me back to the initial insult. I did not want to EVER go back to where I was ten years ago. I have dedicated my life to rehabilitation and maintaining what I have achieved with all of my therapies.

After lots of research and answers to many prayers, I found a doctor in my home state of Arkansas that was having amazing results with RSD patients. Dr. Katinka van der Merwe is a chiropractor that specializes in Quantum Neurology. Quantum Neurology is all about restoring balance in the Autonomic Nervous System. October 12, 2015, was my first appointment with Dr. Katinka and I was cautiously optimistic. I had never been evaluated nor treated by a chiropractor before. She does not perform manipulations as part of her “Three Punch” system. The treatment modalities and techniques that she uses are unlike any I have ever received. Her technique is painless, non-invasive, and does not require any medications. The day I arrived at her clinic my pain level was 8/10. After my initial evaluation and treatment my pain had dropped to a 4/10. As the weeks and treatments progressed my pain level has remained at a zero the majority of the time.

As most of you are aware RSD has no known cure, but there is hope in hopeless situations. Even with my continued spine issues and the need for surgery on my cervical spine, I have been able to maintain low to no pain with my RSD. I cannot tell you how amazing it is after ten years of chronic pain to actually sleep throughout the night, to not feel like you are burning from within, and to finally be able to plan events in my life.

After completing ten weeks of treatments with Dr. Katinka I have been able to slowly stop all of my RSD prescription medications. My mind feels so much more alert and the ability to communicate without losing your train of thought is amazing. I am forever grateful that Dr. Katinka has such a passion and desire to help those who suffer from this isolating, devastating, life altering condition. Do not accept life as it is if you are suffering, and never give up hope! I encourage you to be your own advocate and get help.

By Samantha Barrett, Special Events Coordinator

Last week, you were able to read about a bit of my engagement story. I got engaged in October and we instantly started planning (hey, I’m an event coordinator by trade, it was only natural). We signed up for all of the wedding planning websites, bought a giant wedding planning binder, and started keeping a wedding planning idea notebook. So now it’s time for the next story in the CRPS Wedding Chronicles!

Since we’ve been together for almost nine years, we’ve talked about some of our wedding details before. Our colors are purple and silver, our theme is Beauty and the Beast, our bridal party was selected instantly, and our potential vendor list was easily made. Just a quick fun fact for you, our wedding is Beauty and the Beast themed because that has been our movie for years. People used to joke and call us Beauty and the Beast because of our personas, our looks, and some likely unknown factors. But my Beast is the reformed Beast.

We picked a date for our wedding and realized that it’s a rather touristy time. We live by Cape Cod and have a summer wedding planned, specifically for the weekend right before the 4^th of July. We had to dive right into looking into the venues and seeing if they would work for us. I sent a few emails and made a few calls to our top four locations. After speaking with the locations, I instantly cut two locations. (TIP: If the people start to give you an issue as soon as you call, don’t waste your time with them). So, we went to tour one of the venues. We brought my mom along with us, just as a third set of eyes. This location had great meaning to me, so my expectations were unfairly high.

We drove up and I instantly got butterflies. The building was under new management, which made me nervous. I had only talked to the woman via email, but she seemed pleasant enough. I wasn’t thinking to ask what entrance to use for this massive building, but naturally I went to the wrong entrance to start it all off. The main entrance was on the opposite side of the building, up a hill a bit. Since I had two people with me, we walked up the hill to the main entrance. It was unlocked (thank goodness) and the new manager was there. She looked at me and instantly felt awful for not clarifying what entrance to use. Sometimes, I forget that most “twentysomethings” don’t use canes or wheelchairs on a daily basis, so I get surprised when others get surprised. Oops! Of course, there were no hard feelings and we started our tour.

We took the elevator upstairs to where the ceremony and cocktail hour would be. The building had recently had some renovations done and the room looked gorgeous. I went to the middle of the room and turned around in a circle, picturing everything. It was perfect. There was a chandelier that reminded me of Beauty and the Beast, there were sconces that looked like candelabras like Lumiere from Beauty and the Beast, the windows let in the perfect amount of light while maintaining privacy, and there was just so much potential. My mom was holding my list of questions and started going down the list. We have a really large guest list, so we wanted to make sure the room would hold everyone and still be handicap accessible. The manager really listened to all of our concerns and offered up suggestions for different things we could do in terms of setting up the room, grand entrances, and all of that jazz. So far, so good. We then took the elevator downstairs to the main room. I instantly teared up when we stepped into that room.

Flashback to little Sammie. About a year after I was diagnosed with CRPS, I started my own series of fundraising/awareness events called “Rock for RSD.” I organized concerts in this massive venue in my

hometown because I was frustrated that people didn’t know what CRPS/RSD was. I organized every element of these concerts-

sponsorships, bands, raffles, advertising and public relations, ticket sales, and everything else. I was only 14 when I started. This was how I started my connection with RSDSA. My concerts were extremely successful events. I went on to have one each year until I graduated high school. This entertainment venue happened to be the place that I was touring for the wedding. Funny how things come full circle, right?

Back to the story! We mapped out a bit of the floor plan and thought about décor. What’s fantastic about this space is it can be a blank canvas for us. We’re both relatively creative people (Aaron is an artist, I just get ideas), so turning this space into exactly what we want should be fun! Even better, once we figured out all of that, we were brought into the green room. More memories flooded my brain when we went back there. I had all my meetings with my bands there (and yelled at a few grown men for trying to break contract). I was very familiar with the space. We were told that we would be able to use that the full day. So if I have a lot of pain or my POTS starts acting up, I can go back in there and relax without being right in the spotlight. All I have to do is go through the doors. It’s perfect!

We discussed some figures, my history with the hall (the manager had heard of my concerts and wanted to get me in to plan another one), and more of our vision. We then said goodbye and left the hall. When we got into the parking lot, we all stopped to chat. We were so impressed with what could be done, how accommodating the venue would be, and by the manager. We can bring in our own caterers, DJs, cake bakers, whatever we want. After calculating the minimum price from the other location we thought about touring, we decided it wasn’t even worth it to tour. We picked our location!

So, if you’re planning a wedding and are in the venue hunting stage, here are my tips:

• Tour more than one location. (I happened to have already experienced events in the locations I had wanted).
• Have a list of questions that you want answered with you. They may answer these questions before you ask them, but if there is something that is important to you, make sure you ask about it!
• Bring trusted people with you. I’d suggest your fiancé/fiancée, but maybe consider bringing a member of your bridal party or a family member that may think of things that slip your mind (excitement happens).
• Check for stairs, hills, gravel walkways, and other obstacles. A venue may say they are handicap accessible, but it may be difficult to navigate certain areas. The place you want your ceremony/reception may not have a realistically handicap accessible route.
• If there is an area that you may not be able to get to, see if they will offer you some kind of accommodation. They may have a portable ramp, an alternate route that you don’t see, or another suggestion.
• Bring some images that act as your inspiration for the big day. Do you want a rustic wedding with bales of hay as the seating? Bring that in as a picture. Bringing in a few images will help the venue manager see what you want and will help you determine if that is realistic at that location.
• Consider your creativity. Some venues are beautiful without needing anything else, whereas others need some decor help. If you don’t want to spend extra time/money on decor, pick a location that is already picture perfect. If you want to utilize your Pinterest DIY pins, pick somewhere that is more of a blank slate.
• See if there is a quiet area that you could escape to in case you get a surge of pain. Stress can impact your pain levels. At some point, you may want to just get away from the vibrations of the music and all of the people (no, don’t use this to escape your in-laws. You’re stuck with them now).
• Beware of hidden fees. They are everywhere. Some locations, if you go over your time by 2 minutes, they’ll charge you for an hour extra for the room fee plus the fee of staff. Make sure everything in the contract is written out clearly. Bring up any concerns you may have.
• See if the venue requires you to use their vendors. Some venues have bakeries, caterers, and DJs that you must use. If you have your heart set on a certain bakery for your cake, that may be a a deal breaker.
• Go with your gut. If you are getting negative vibes from the coordinator, manager, or other staff member that you will be in direct contact with, don’t bother with the place. You don’t want that negative energy to bring you or your loved ones down.

That’s it for this issue of the CRPS Wedding Chronicles. Next time, join me as I go dress shopping for the first time.

By Samantha Barrett, Special Events Coordinator

In 2015, I had one of my worst CRPS flare ups, thanks to a dislocation from EDS (Ehlers-Danlos Syndrome). It was scary to me because it was the one limb I had not experienced pain in. But, it happened and I was in a wheelchair. I fought my way out of the wheelchair and back to my zebra print cane after a few months. I was ultimately used to flare ups at this point, as I was nine years into my diagnosis with CRPS.

What did I do when I was able to move again? I went to a renaissance fair with my boyfriend and a group of friends. I had been looking forward to this fair for over a year, but I started the day off by forgetting my wallet at home… Spectacular, right? I blame pain brain. I knew I could not make it through a full day, between my pain and my mood, but I decided to make the most of it. And how can you not laugh when everyone you are with is in costume, which makes your boyfriend buy a kilt to have something to wear. But he kept running off with the males of the group while I went around the park with my friend. (Note: Looking back, I realize this was very uncharacteristic of him, especially in crowds where he likes to protect me from anyone that may bump into me). We met up for lunch and he brought me “Love On a Stick” that they sell at the fair (a purple rose). And then we went our separate ways again. The biggest event at the fair is the jousting tournament between the knights to try to win the princess over. That was the end goal for us. When it got to be an hour before the tournament, we all met up. We wanted to get a good place to view the event, so we headed over there early. My arm had been hurting from carrying my coat in the crook of my arm all day, so he took my coat. But then he took my water, my rose, my phone, and everything else from my hands and passed it off to our friends. I was quite embarrassed because I thought I was starting to look like a privileged princess myself. But then I was turned around to see him kneeling on the ground, and he was not tying his shoes.

After eight and a half years of dating, four years of college, three new diagnosis (for me), and already a lifetime of memories, my best friend proposed to me. You can even see my zebra print cane in all of the pictures that people took from the proposal. That face is pure shock. I had absolutely no idea. I think the number one reason I really did not expect it is because there were so many people around and Aaron (my fiancé) is extremely shy. We are middle school sweethearts that were set on each other from the start. Our friends have called us mom and dad since high school. Now that we are engaged, that means a wedding has to be planned! Do not worry everyone; I have only been planning my wedding for seven years. It should not be that hard… right? Okay, stop right there. I can hear you laughing through the computer!

I consider myself very lucky. I had been diagnosed only a few months before Aaron and I started dating. He was petrified by CRPS at first. But then he sat down and researched it with one of the members of his family so they would know what to expect. He went from being a boy with a blue mohawk to a man on a mission to help me along this ride that we call life. I was told by various people for a very long time that he would get tired of loving a disabled person and would leave before even considering marriage. It was discouraging to say the least. But I knew he was different than that. And he continues to prove to me every day that he is different. He has even started to educate people about CRPS on his own. You may even see some of his graphic designs at upcoming RSDSA events. All of this made me realize people can tell you your life will be a certain way, but that doesn’t mean it will be. I was told I’d never walk again when I was 13- I was able to walk again. I was told I’d never get through college- I graduated summa cum laude as a double major. I was told I’d never get married- that’s about to happen now. I realize now that your life is not to be dictated by others. You are so much more than your CRPS. You may have to try a few times and you may need to do things differently than some other people, but you can do virtually anything.

Let me entertain you for the next year and a half as I plan my wedding. You will get a firsthand account of all of my trials, triumphs, and stumbles along the way. I know that having CRPS will require me to think of some things that other brides do not have to consider. At this point, it is second nature for me though. From finding a wedding dress that does not hurt my skin, to finding a venue that has options other than stairs (and everything in between), you will get access to what is happening in my wedding planning life. Balancing CRPS, a job, and a wedding is not necessarily a cake walk, but I am going to make the most of it! (Oh, I forgot about the cake testing. Yum).

Our bridal party has been selected (a total of 16 about people). Right now, I am working on guest lists. Our guest list went from “Let’s keep it around 150” to “Mom just added more people, so we are at 220.” Oh boy. Wish me luck! Stay tuned for the next CRPS Wedding Chronicles story!

– The Future Mrs. Anderson

By Guest Blogger Audrey Johns

I came across this meme on Facebook this morning and some emotions (both good and bad) came flooding back from yesterday. I have a disease called CRPS, a painful nerve disease that makes everyday a new struggle… heck I’m writing this to you from my bed, atop my 4 inch memory foam mattress pad, the only place I can be when in extreme pain.

Yesterday I was working with a new pilates instructor, I was exclaiming how wonderful it was to feel pain from exercising, not CRPS pain but pain that was positive and that I knew was making me stronger. She did not understand, I had given her some guidelines before we started like not to touch my left leg (the pain from someone touching my leg can result in being laid up in bed for a few days) but she still had questions after my telling her how much I enjoyed having positive pain for the first time that week.

As I laid on my back on the reformer machine feeling the pull of the straps I felt a tear roll down my face… I pulled it off as sweat but I also went on to explain what CRPS was and how it has affected my life.

I am a very positive person (some may call Pollyanna optimism) but I told her briefly about the disease and then immediately (and even a little involuntarily) went into how it has changed my life for the better. I explained that I used to be in property management and now I am an author because of my CRPS, I explained to her that in my boredom after being diagnosed I started my blog, at first just typing one handed, eventually getting hired by newspapers to write columns and now publishing a cookbook with a NYC publishing house (check out my new cookbook here). I told her that I would never have the wonderful and fulfilling life I have now without the extreme burden of my disease.

Now I know what you’re thinking, that I started talking about the positives to ease her uncomfortableness, people hate hearing you are in pain and if you can give them a positive, it makes them less uncomfortable… but this was also for me, I can’t dwell on just the negative. For me, dwelling on all the pain and hell I go through everyday makes me depressed and only makes my CRPS worse, but if I can find something positive to focus on I can get through.

To be very clear, I wish I was free of this disease, but I am grateful to be the person it has turned me into. Defiant and strong spirited even on my worst days, the defiance is growing everyday, and especially today as the glorious soreness of exercise spreads over my body. It feels amazing to be in pain because I kicked ass yesterday, not because my body is kicking me down.

So, back to the meme I found that prompted this article, something went very wrong in my life, I have CRPS in over half of my body, but I can choose how to react to it. I can use this “plot change” to better my character and even parts of my life. I can choose to make my life better, to find things I CAN do (like Pilates!) and I can be a warrior everyday, even if that means I am Sargent Pollyanna!

Click here to purchase Audrey’s new book on Amazon!

By Guest Blogger Suzanne Stewart. Originally Featured on her Tears of Truth blog.

Hello Luvs,

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

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

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

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

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

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

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

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

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

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

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

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

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

Please consider making a donation to RSDSA today!

By Ryan Ferrell for the RSDSA website.

Do you sometimes struggle to get Enrique out of your head?

Yo quiero estar contigo, vivir contigo

Bailar contigo, tener contigo

So does Lucrecia Martinez, a physical therapist from the Silicon Valley. She wrote about wrestling with her chronic pain after an injury in last summer’s Community Update (page six):

Until then, my passion in life had been dancing. My husband and I met dancing. We loved to escape on date nights to dance salsa, cumbia, merengue, and any other Latin-infused music.

At first, I denied that pain could rob me of my passion. I would grit and push myself through the pain. I feared that, if my husband and I could no longer dance, he would feel sad. All of this dancing in denial, however, would cause are-ups that lasted for days.

Some years later, while working with my patients, I realized that neither dance nor pain needed to dictate my life, that my life was mine alone. I taught patients how to modify and pace their activities, helping them to manage pain, regain function, and reach personal goals. Why not do the same for myself? Why not modify dance?

Lucrecia’s article on modified dancing a great read, complete with a playlist of songs whose rhythms are easy to adapt to new moves, no matter one’s physical limitations. Even better, she has now released videos on YouTube!

So if you’ve wanted to dance, but needed new moves… open YouTube, make some room, and start to groove.