CRPS Wedding Chronicles: Venue Hunting

CRPS wedding chronicles. Sammie and Aaron are preparing for their wedding. Sammie has CRPS. This week, she details touring venues for the weddingBy 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 4th 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

Rock for RSD
A collage from the first Rock for RSD

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.

CRPS Wedding Chronicles – The Engagement

Sammie and Aaron get engaged with zebra print cane in hand. CRPS engagement story 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

Aaron and Sammie at the Achilles Finish Line walking to raise awareness for CRPS
Aaron and I at the Achilles Finish Line in 2015

How My CRPS Pain Plot Twist Changed My Life

Meme stating "If something goes wrong in your life, just yell 'plot twist' and move on" as it applies to pain and CRPS

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!

Audrey Johns poses with her new cookbook, which you can buy on Amazon now. She blogged about how pain and CRPS positively impacted her life.

5 Do’s and Don’ts When It Comes to People with CRPS

CRPS Do's and Don'ts are particularly useful for friends/family of those living with CRPS/RSD
Anna with a friend that follows the Do’s and Don’ts

By Guest Blogger Anna Evenosky

So often we find ourselves in situations where people are trying their best to help us when in reality they very well may be hurting us. I can see how being a loved one of someone with CRPS can be challenging in more ways than one. You may find yourself not knowing what we want from you. I hope these 5 Do’s and Don’t give you more insight as to how you can help and comfort us.

DO: Ask us how we are doing.

Our CRPS is something that is always on our mind and we appreciate knowing that somebody is thinking about us. You don’t need to worry about bringing up a sensitive topic because, chances are, we have already been asked what you are wondering. I know you may feel uncomfortable approaching the situation, but with it going unspoken about it is just as uncomfortable! You asking us how we are doing and if anything is new shows us that you care and gives us somebody to talk to.

DON’T: Ignore and fail to acknowledge that we are going through a hard time.

We know you may feel sorry and not know what to say or how to handle the situation. You not acknowledging the situation makes us feel hurt and abandoned. It makes us wonder how we are supposed to handle the situation on our own without our loved ones support.

DO: Listen to not only the happy parts of our illness, but the sad parts too.

Use the stories you hear from us as knowledge that you can then share with others. Awareness is key; knowing that you are helping spread awareness is one of the most comforting things you can do for us.

DON’T: Disregard the “ugly” parts of our illness and only spread the happy parts.

This is hurting us in so many ways. It stinks but these days people need to see the bad in order to support you and have sympathy (although sympathy isn’t what we are after). It is so often that CRPS gets brushed aside and people don’t believe how much we suffer. This is because you are only aware of the person who benefited from a treatment, the success stories, or the smile that we always have on our faces. People are not aware of the person who is bed ridden, has lost all function, or breaks down more times than one can count in a day.

DO: Offer us your help when we are not feeling well.

Even though there is nothing you can do for us that will cure us sometimes just knowing your willing to help is enough to put a smile back on our face. Please know that any way you help is benefiting us, no matter how big or small.

DON’T: Say “I’m sorry” and give up on helping us because you think it is useless.

When we text you saying we don’t feel well, take that as an opportunity to help us or take it as a call for help. Sometimes just having your company is enough to put a smile on our faces. Although when you give up on helping us and stop offering us help it makes us feel as if we should give up on feeling better.

DO: Offer to come over and lay in bed with us or make us something to eat when we unexpectedly cancel plans.

So often, our needing to cancel last minute is seen as not wanting to spend time with you. In reality, we are heart broken that we can’t get out and do something fun with you. We would still LOVE to have your company even if it means you sitting next to us as we doze in and out of sleep.

DON’T: Accuse us of not wanting to hang out with you when we cancel unexpectedly.

We are already upset enough that we can’t see you. When we see that you are annoyed or disappointed with us it makes us fall into a deeper state of depression. Please know we really want to spend time with you and that we are in a constant fight with our body!!!

DO: Tell us that you can’t understand completely but are always there for us and will do anything to understand better.

It is ok to tell us you can’t relate. That doesn’t make us feel sorry for ourselves, it actually makes us happy since it shows that you believe that what we are going through is very hard. We love to know and it’s comforting to know that you will do anything it takes to understand or even get a glimpse of what our life is like.

DON’T: Tell us it could be worse and not support us.

You have no idea what we are going through and are not in a position to tell us that it can be worse. That is the most disheartening thing you could tell us. It shows us that you don’t believe how much we suffer. Please remember that different hardships come with different illnesses and no two are comparable. This comment is not comforting to us.

Next time you find yourself in a situation where you are not sure what to say or do, please remember these 5 things. These can make a huge difference when it comes to our relationship with you and our overall well-being. We hope this helps explain everything a bit better and gives you a glimpse of our side of things. Thank you for supporting us and if you are a loved one reading this- thank you for making an effort at helping us.

Please consider making a donation to RSDSA today!

Living Beyond Your Illness – Getting By With CRPS

Hands in for CRPS/RSD AwarenessBy 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!

Cats help raise hope for CRPS/RSD

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Think Twice About Eating That – CRPS and Diet

By Patricia Calderon, Guest Blogger for RSDSA

Who would have ever thought that what we eat while having CRPS/RSD would cause us more pain then we already experience? I found out the hard way when my symptoms were getting worst and worst each day, then some days not so much. “There has to be a reason for this,” I said to myself. So, I kept a diary of all the foods I ate and my pain scale throughout the day. Low and behold, I found out that I was making my pain increase each day with the foods I was eating. Consuming a lot of processed foods was one of them. Because I am always in pain and can’t stand for more than 10 minutes, microwavable foods were all I ate at one point. In this article, I will be sharing what foods to eat and which to avoid all together, along with a recipe that has helped my inflammation each day.

CRPS/RSD is often described as injury to a nerve or soft tissue that does not follow the normal healing path. Many physicians agree that the complications and pain from CRPS are due to inflammation. Basically, if you have CRPS, you suffer from chronic inflammation. Eating an anti-inflammatory diet focuses on eating foods that heal and naturally reduce inflammation and also reduce triggers of inflammation. Foods that tend to trigger the body’s inflammatory response can cause an increase in joint pain, stiffness, redness, swelling, heat, and even loss of function. Since most sufferers of CRPS/RSD already have a heightened inflammatory response, eating foods that can increase inflammation can worsen already inflamed and painful areas and lead to further damage.

Benefits of an anti-inflammatory diet

Following an anti-inflammatory diet provides the building blocks to:

  • prevent further nerve damage
  • help heal current nerve damage
  • increase circulation
  • improve sleep
  • increase energy
  • decrease pain perception
  • improve mood
  • increase joint mobility
  • strengthen immune system

Let’s talk about foods to avoid. Coffee and chocolate contain oxalic acid -so too much of these can inhibit mineral absorption. It has been stated that chemical compounds in coffee can interfere with the opiate receptor sites in the brain, interfering with nerve transduction and pain relieving mechanisms (though I haven’t read any scientific research on this) which results in a decrease in pain tolerance. So you have to imagine that I, a caffeine junky, can’t have caffeine anymore. This was one item in my food diary that I started to slowly ween off of and day by day I noticed less pain. My pain was not fully gone, just relieved a bit more than other days.

Stay away from sugars. Sugar triggers an inflammatory/aging process called “glycosylation”. Avoid white refined sugars and flour products including white bread, bagels and white rice. Also to be avoided are sugary sodas and other high sugar drinks.

Animal fats contain an inflammatory agent called arachidonic acid (AA). Unfortunately, this means avoiding or strictly limiting red meat, butter and whole eggs. Stay away from processed meats (hot dogs, sausages, bacon, etc.) that contain nitrates, which can really increase inflammation.

Now that we got the bad food out of the way, let’s talk about foods to eat. I know what you’re thinking… Do I have to become a vegetarian or go vegan? The answer is no, but if you find that eating that way works by all means GO FOR IT! Eating a variety of colorful fruit and vegetables, and rotate them, to get the maximum nutrients (don’t just eat the same vegetable every day). Smoothies are a great way to get more nutrients into your diet if you are in pain and not feeling particularly hungry. I found that smoothies where the way to go for me in the morning and at lunch because they were less time consuming and due to all the medication I don’t feel hungry enough to eat a meal. Prepping the smoothies ahead of time and storing them in the freezer is best. When you feel like having a smoothie, all you do is empty the contents in the blender and add juice.

Turmeric, ginger, nutmeg, and cinnamon are particularly good spices to try to include in your diet. Not only do they enhance flavor, they also have various phytochemicals that have been studied for their anti-inflammatory and analgesic properties. Below is a turmeric juice recipe I drink every morning. This helps fight inflammation throughout the day.

Anti-Inflammatory Turmeric Juice

1 Medium Carrot

1 tbsp Ginger

1 juice from lemon or orange

1 tbsp Honey

2 tbsp Turmeric

2 cups Coconut Water

Directions: Place all ingredients into a high speed blender and blend until smooth. Drink as is or strain through a strainer. ENJOY!

Note: This is based on the writer’s experience and opinions.

RSDSA Spotlight: How CRPS Taught Me to Live In the Moment

CRPS enjoy the moment: Someday you'll be someplace else, enjoy here nowBy Anna Evenosky, Guest Blogger

Rewind to that time that is so vague in my head that I can barely remember it. The time of my life when I was as free as a bird spreading its wings for the first time. The time of my life when I didn’t know CRPS existed.

I can’t recall what being pain free feels like. Although, I can recall the happy times I would be lying if I said I didn’t miss. Going from a life where my biggest worries were passing a class, or getting something done on time, to a life of chronic illness, was an adjustment to say the least. Something I wasn’t exactly ready to take on. Although, I’m sure at no point is anybody ready to handle watching their life seemingly crumble to pieces.

Reflecting on my life before Chronic Illness is something I do more often than not. I always find myself coming to the same conclusion and same regret – why didn’t I appreciate how good I truly had it? Why is it that we don’t know what we have until it’s gone. No matter how many people claim that they don’t take for granted being able to walk from point A to point B, truth is they don’t know anything different to be able to appreciate it. To those people who wake up every morning and complain that they are “too tired” to get out of bed. I hope you appreciate that on top of fatigue you don’t need to deal with pain worse than child birth, swollen limbs, and wondering if your body will give out on you when you stand.

Surviving in a life with CRPS is something that nobody should need to face. To those Warriors who have no choice but to fight, I hope I can convince you to always live your life in the moment. Every Warrior deserves to live as “normal” of a life as possible. In fact you’re so busy fighting, worrying, thinking about the future all the time, that sometimes you must learn to let it all go and do what makes you happy. Life is too short and our ‘good days’ are too short to waste them on things that don’t ultimately leave a smile on our faces at the end of the day.

On that rare occasion where you have enough energy and feel well enough to go out with some friends or your family, but you’re torn on what to do, because you have a test in school tomorrow, or have been struggling with too much on your plate at work and should really work overtime, do yourself a favor. Live in the moment. Realize that not getting that A+ won’t make a huge impact on your grade; and realize that you avoiding your work for one more day won’t make a huge difference. Don’t think about what impact this decision will have in the days, weeks, months to come because chances are it has no impact that far into the future. Sometimes, we must stop striving to go above and beyond in everything we do, but shift our focus on making ourselves happy. I’m not saying school and work shouldn’t be a priority. I’m simply stating that your overall well-being and happiness should be just as important. Sometimes it isn’t even a matter of choosing between one or the other, but a matter of finding a happy medium. When a good opportunity comes your way, no matter the sacrifice you may have to make if it’s going to bring you happiness jump at it. You never know when your health may take a turn for the worse and that opportunity may no longer be available to you.

You, a CRPS Warrior, go through and have lost too much to lose your happiness too. Maybe there is no pill we can take or treatment to cure us, but I can assure you that happiness can go a long way and make this life you live a whole lot easier. This is one thing that you can do to truly help yourself. So next time you say “What if?” or “I can’t, I have a lot of work” or “I wish I could, but I really should ­­_______” , smack some sense into yourself and treat yourself to something you deserve. Never lose touch with what brings you true happiness. After all, we never know what the future may bring and I’m sure you would hate to look back at your life and have regrets. Live in the moment it truly is the best medicine you can give yourself.

So You Want to Dance – A New Way to Help CRPS

Lucrecia teaches dance as a form of physical theraphy for CRPS/RSD painBy 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.

RSDSA Spotlight: Dear Body

RSDSA Dear Body Melissa LovitzWritten by Melissa Lovitz, Guest Blogger for RSDSA

Dear Body,

I’m sorry for wishing you were different and calling you flawed. Living with chronic pain for twelve years taught me to question a lot and dislike much about you. In the chronic pain world we’re encouraged to constantly ask ourselves, “are you hurt or does it just hurt?” We live in a world where “find a distraction” is our first line of defense because “find a reason” and “find a solution” aren’t always possible. The absence of an explanation from you about why it hurts makes me crave reason and logic that much more; that directly conflicts with my experience of pain for which there is little semblance of such amenities.

I’m sure many other bodies with chronic pain can relate to the psychological scrutiny they experienced when they first sought treatment for why they hurt. Doctors and family members alike were determined to tell me that you’re making it up – it’s all in your head. IT’S NOT IN YOUR HEAD! The only things that are in your head are the decisions you make and the ways you live your life each day in spite of and because of your chronic pain. Body, I spend a significant amount of energy and effort fighting for functionality and normalcy which both come with their own unique consequences. For example, the cultural notions of what a “perfect body” looks like has made it easy for me to find reasons to dislike you. Mainstream media tells me ableism and thinness are indicative of ideal bodies; for you, that’s not realistic. It’s hard for you to attain what the world depicts as the “perfect body” because often there’s no explanation or quick fix and, in some capacity your physicality is limited. I’m sorry if there were some days I pushed you too hard. When you live with chronic pain, you’re taught to simultaneously be hyperaware of yourself, question yourself, and ignore your pain whenever possible.

The dismissive nature of ignoring your hurting, ignoring you, can be minimizing to a body plagued by chronic pain. It perpetuates a narrative that suggests that I can just think your pain away and that it’s psychological, maybe even not real. I think this makes others perceive your experience as less severe. Living with an invisible illness means that if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Likewise, for you, that same narrative makes good pain days much more deceptive. I sometimes find myself questioning your experiences – asking “is it really that bad?” Sometimes, I even feel like those other, bad, days are someone else’s life, a dream, or something you conjured up. That’s what they want me to think! The problem is, if I’m questioning you, why am I surprised when others do too? What accommodations, narratives and misconceptions are others supporting or creating about chronic pain that keep us questioning you?

Here’s an idea, Body, rather than criticizing you let’s, together, accept your reality, reclaim your strength, and demonstrate all the ways you can be excellent? All the ways, WE can be excellent.

Sincerely,

Me

 

RSDSA Spotlight: When to Listen – A Day In The Life With CRPS

RSDSA Guest Blogger Autumn Strand. Why people need to hear those of us with CRPS/RSDBy Autumn Strand, Guest Blogger for RSDSA

I, like many, had never heard of RSD/CRPS until it actually happened to me. I remember on the ride home googling it after the 3rd doctor I had been to said it is what I more than likely had. After many tests and even more treatments, I was diagnosed with this mysterious disease but I still wasn’t sure what was happening to me. I have done a lot of research, and I am still learning new things every day. In my experience, most doctors do not know very much about RSD/CRPS so how can other people know?

In the world of invisible illnesses it is almost impossible for people without them to know what it is like to be you. I look fine. I look like a normal thirty-something woman who is going about their day. I may look a little strange because I am pretty much always carrying my right arm around but for all intents and purposes I look “normal.” Now let me tell you the real story. If I am out of the house I probably have makeup on or my hair looks halfway decent. To look halfway decent required A LOT of effort. I winced, and took breaks, and sighed, and cursed the pain gods many, many times. I am also sweating from not only the effort but from the pain. To top it all off I am nauseous because I am almost every day. Yay, now I can leave the house. If I am riding as a passenger in a car I have to deal with a passenger side seat belt. This is constantly a problem because if the seat belt touches my collarbone it hurts and then causes a domino effect making my pain worse than it already is. Let’s say I get to my desired location, now I will carry my RSD infected right arm around with my left hand. I have been doing this for a very long time and the reasons are: because it hurts just hanging there, I feel like I am somehow shielding it and I am likely having a tremor. You may see me out in a store or at the library and I may seem fine. I am not. I am screaming on the inside. I am trying not to think about the pain. I am on fire but you can’t see my flames.

A lot of the time staying at home just sounds so much better. But, the same thing happens no matter where I am.

So I have painted a slight picture of what I deal with and now I want to talk about listening. People who do not have RSD/CRPS do not know what it is like. I constantly hear other people tell me their arm, leg, finger, toe, head, neck, etc. hurts and I am positive it does. Does it feel like you are literally on fire and there is nothing you can do about it? Probably not. Does it feel like you have ten thousand angry fire ants crawling in your veins? I hope not!!! Does it stop? I really hope it does.

Mine does not.

There are days when the fire is a slow burning flame and the ants aren’t as angry as before, but it never goes away. There has never been a day where the swelling wasn’t pulling my at skin, or the intense throbbing wasn’t another heart beat I was feeling. There isn’t a day when sitting in a chair or laying on a bed wasn’t causing me actual pain. When I make a passing comment of “my arm/shoulder hurts,” it doesn’t just hurt, it’s just all I said. Sometimes people with these invisible illnesses just need to be heard. I know I try to explain it to those around me and even though they may try, they do not know. There is no way to know unless you live it. I know I am seen as ungrateful, a complainer, lazy, and that I exaggerate but those people don’t know. I am glad they don’t know the hell I live in because I wish I didn’t, but they also don’t listen. They hear you but they don’t listen.

In life people generally just want to be heard. People with chronic pain need to be heard. We need to tell people that something on us hurts without hearing back something on that person hurts too. We aren’t being narcissistic, or at least we are trying not to be, but it’s not the same. We don’t know the pain you are in, but you most certainly do not know the pain we live with every second of every day. We all just need to listen more and those without chronic pain need to also understand more. We didn’t ask for this and we would give anything to not be living here.