Dear Workman’s Compensation

Offering a Helping Hand

Dear Workman’s Comp,

Yet another night goes by since I won my case and still my medication stays locked away in the vault called the pharmacy.

I was injured seven years ago. It wasn’t even my fault. I had to fight and prove I was really hurt. I had to go out and get a lawyer. Was forced to see multiple IMEs that had never heard of RSD/CRPS let alone how to spell it. Was told that although I am in pain I was only worth so much in your eyes. 

Everytime I called my nurse case manager I felt as if I were, in her eyes, no more than a pest. Begging and pleading for her to help me rebuild my life but instead got told I was a lazy unproductive member of society.

Yet, I trudged on.

Did what I needed to do and danced like the little puppet they wished me to be.

For WHAT?

So I could get medication to be able to function in my pieced together hodpodge life.

What happened next?

You deemed that frivolous spending and took it away.

If my pain medication were insulin would you still treat me in the same light?

Just because I won’t die without it doesn’t mean something inside me isn’t wasting away.

Your evaluators never gazed upon me or examined my physical complaints.

Yet they saw me as a number and words on a page.

Never stopping to wonder the damage this would engage.

On a beautiful young lady of almost 28.

Did you stop to think of ripple effect?

The tear soaked pillow or the pain in my chest?

No, you cast me aside without no thought or regard on how without my medication my heart was turning hard.

The hardness in my heart is becoming a daily struggle.

I am becoming Sisyphus and I’m always falling. The rock is forever hitting me in the face. Pain coursing through my body and I wake face down on the ground.

So please take this note and know you have been served.

I’ve had enough of being a number and being unheard!

Link between Enlarged Choroid Plexus & RSD/CRPS

Pain Taken Seriously

A New Study out of Aalto University

In conjunction with researchers from Helsinki University Hospital and Harvard Medical School , a study has shown a surprising connection that excites us here at RCDOM.

Pain Taken Seriously
When will our pain be taken seriously, the TIME IS NOW!

Their study consisted of 12 people with CRPS and 8 people with another form of chronic pain. Upon comparing their MRI’s, there was a strong similarity in all 12 CRPS patients that the other 8 lacked:

A 21% Volume Difference in the size of their Choroid Plexus.

For those that don’t know what your choroid plexus is: it is one of the major producers of fluid in your spinal cord and around your brain. This fluid protects and cushions the central nervous system and source for maintenance of the brain. It also is a point of entry for immune cells to enter the brain, so essentially it is a nervous system cosway.

In the past we have reported about glial cells. These cells are very important in the creation and maintenance of pathological pain state. If we can find out why glial cells are malfunctioning and why these researchers have found the choroid plexus is enlarged in patients with CRPS, we may find the cause and maybe even a solution to this pain that we are feeling.

This study is definitive proof that there is a connection between brain inflammation and chronic pain, such as CRPS. It also confirms suspicions that CRPS has connection to another well known autoimmune disease, multiple sclerosis. Multiple Sclerosis has been also found to be linked to a malfunctioning choroid plexus.

This new provides a large amount of hope to a community that needs it. I hope this opens many new doors for researchers to explore.

Study: 

Enlargement of choroid plexus in complex regional pain syndrome: http://www.nature.com/articles/srep14329

Additional studies of Interest: 

http://www.ncbi.nlm.nih.gov/pubmed/18354707

 May 25th, 2011
http://psychology.about.com/od/gindex/g/glialcells.htm

MAURY M. BREECHER Glial Cells and Pain Control
50th Annual Meeting of the American Headache Society  Boston, Massachusetts June 26-29, 2008

Life after Diagnosis: Evan Karp & The Snuggle Buddies

Snuggles

Life after the diagnosis can be hard. Many spend years fighting only to one day come face to face with the likelihood of progression and depression as their old life becomes a distant option.  Well we met someone who faced this and found his inspiration to overcome. He is living our motto, “there is life after diagnosis.”

Evan Karp was 18 and just starting college to be a chemist and hopefully one day a doctor when he developed incurable pain. The doctors didn’t know initially what it was, but thinking possibly some sort of neuropathy had developed. It wasn’t until when he saw specialist in Philadelphia, Dr. Schwartzman, who identified it as RSD.

Evan admits from 18-20 he tried to live life pretending nothing was wrong. But he found himself more and more solitary, to the point he describes his next 6 years as he “gave up on life.” He was living a very solitary life with no purpose, no outlook.

Snuggle
Snuggle

To help him fill the time he would watch television, play games, look through articles online. But he one day he came across article about professional cuddling. He felt that with his only social interaction was with doctors, he saw the positive use for this in his own life.

For those who are unaware, there has been research studies that have shown just sleeping next to someone can extend your life. Physical interaction such as cuddling can also improve your state of mind chemically.

Now as Evan pointed out, “Pain from walking can be a huge discouragement,” so to have normal social interaction is not always easy for us. So he looked into the services available, and there were only two places available. So after some thought he became determined to try and make it more available to others, even if not for himself.

That is how he started his business, The Snuggle Buddies, in November 2013. He says it only took a few days to get his heart set on it. With a very awkward discussion with his first investor, his mother, he purchased the company’s domain and started the business. Within a few months it was self sustaining and now as he put it, it’s all fallen into place. And now when he speaks with his mother, he said she frequently reminds him of how proud she is of him.

Evan has had RSD (CRPS) for about 9.5 years as of now and is a business owner for the last 2. And as anyone knows owning a business is stressful. But he attributes the forced responsibility from running a business as to how he has kept his depression at bay.

When we asked Evan about his insight about how important he felt touch is for someone with RSD? “Really important as it (the lack of) does add to the depression being without it.” But he pointed out that even just being around people has helped the pain decrease, as there is something more to focus on than the pain.

Now Evan admits, he did doubt it would be successful when he started out. But his secret of success is one we can all learn from. His motivation is that he never wants to go back to the life before the business and being stuck in depression. His life goals have changed, he’s found a new way to live with the RSD. And he’d love to see an expansion plan of the company, in every state/every major city.

When we asked him about why he feels this industry is becoming so popular, he points to the increased role of technology in people’s lives. The lack of need to leave their homes, the decreased interaction with people on a regular basis. Not all of his clients want to cuddle, some have contracted appointments just to have someone to accompany them to dinner. One client went so far as to pay to take two women to Disneyland, which Evan admits he wishes he had been able to go.

His biggest word of advice to our community is know what your doctors are able/willing to try and what they aren’t. He moved from New Jersey to Nevada and his medicine in Nevada has been very helpful. When he went to consider moving back to New Jersey, the New Jersey doctors told him they would refuse to continue his medicine because it is an Alzheimer’s medicine, not a RSD/CRPS medication.
With the condition in both his hands and feet, he does not want to change medications from something
that seems to work for him, to something that might be an approved medication, but possibly not as effective.

Life after diagnosis is possible, as Evan is a great example. We just need to find what we have a passion for, what skills we can still use, and how we can continue to make them work. Don’t give up just because you can’t work somewhere right now. You are still valuable, you are still amazing. You just have new rules to live by.

And because we both of our interviewers use gaming as a therapy, we asked him. Yes, Evan does game, specifically Heathstone, as he points out, it’s not as hard on the hands.

Update your bookmark

UPDATE NOTICE:

As some may have already noticed, we have had an update to the site to make it easier to type, RCDOM.org.

But some sites and links are still pointing to our old domain address. I’ll attempt to contact those I can find, but for those users who have it bookmarked I wanted to make sure we tried to update you about this change.

We’ll be sending out a second notice the day before it cancels, to make sure you’re reminded a second time before your links go silent.

Maria – RSD Changes Everything, Even our Shoes

RSD Angel Express Newsletter

I’m Maria; I’m a wife and mother, fashionista and shoe enthusiast.  Not all of my days are bad, but no one knows about the really bad days because I hide them. Often, I feel like my CRPS has stolen my sense of self. I have a great doctor and on my good days I really enjoy life. My family knows what my battle with CRPS is like, but no one else really has a clue, until now.

I have Complex Regional Pain Syndrome CRPS. This is #myinvisiblefight.

When I worked for a school district, I  prided myself in my dress. I identified my inner self with sense of style and always being well put together. I owned stylish clothes, a mountain of shoes with cute heels; wedges, stilettos, strappy shoes, mules and all in different colors. I adore shoes. I love jewelry and always accessorized and coordinated my outfits with my jewelry. I could never wait for pay day!loved browsing my favorite local boutique and more often than not would pick up a new set. I wore my makeup tastefully to highlight my eyes and hair. I loved dolling  myself up everyday so that no matter what the situation, I felt like I was ready to tackle anything.

When I was diagnosed with CRPS in April of 2010, I was not prepared for the life changes ahead of me.

CRPS is the most pain neurologic disease that can be diagnosed. On the McGill pain scale, CRPS is listed above a first birth, kidney stones and having an amputation. This is daily pain, inflammation, and swelling that never lets up. It is always there. The symptoms never subside completely. CRPS typically occurs after an injury or surgery, although spontaneous cases have been reported.

CRPS is a non-discriminatory disease.

The sympathetic nervous system runs through the nervous system, the bones and all the organs. It puts the body in constant “fight or flight” mode so swallowing; digesting food and even the resting heart rate can be affected.
The first things that begin to happen to my body were severe allodynia, or extreme sensitivity to the lightest touch. Even the air from a ceiling fan would cause extreme sensations and pain. I had to change what clothing I wore, some fabrics were simply to harsh and uncomfortable and painful on my skin.  I went from tailored clothes to loose fitting because of the extreme sensitivity.

I did not yet know right away but CRPS was affecting my legs, it had started in my upper torso. My cute shoes turned into flat loafers and I could barely walk by the end of my work day. Still, I had to fulfill my contract through the first week of June with the school district. So on I carried, in my flat loafers as best I could, until summer break.

I spent the entire summer having tests run, and by the first week of August it was official that the CRPS  had spread and the symptoms continued to progress. It became painfully obvious that I would not be able to return to work. Within months I became homeboundand unable to drive.

Here is what I want you know about my invisible illness:

  • I don’t ever go out without makeup and a cute maxi dress or capris and cute shirt. I may look cute but I am always in pain.
  • When I am at home, I do not wear makeup. I wear a tank top and underwear.I am never cute or put together.
  • If someone drops by unannounced, I am embarrassed.
  • My once immaculate house is no longer pristine. I can not do housework. I can not afford to hire help. My daughter and husband do what they can when they get off work from their demanding jobs. Occasionally I put dishes in the dishwasher or a load of clothes in the wash.
  • My carpets used to be impeccably clean.They are now in desperate need of cleaning. 
  • I am on Medicare at the age of 46, and have been unable to receive SSI Disability because I worked for a school district and they paid into an alternative retirement system.
  • My 24-year-old daughter stepped in to help pay bills and support me. Everyday, I fear that I am halting the progression of her independence.
  • My son moved out at the age of 21- he could not stand to watch this disease progress.

You can not see the tears and heartache of a family that no longer depends on me for anything. They don’t call me for anything. They call to check and see if I am doing alright. My son calls and asks how my day is going.
You can’t know the toll this on taken on my intimate life. My husband and I have been married 26 years and are still very passionate about one another. Except, either I can’t or don’t want to be touched. It hurts.
You can’t see the days I can not bathe. I towel off, don’t smell fresh, hair unkempt, teeth not brushed because it hurts too much. The fatigue can be overwhelming and I sleep for 16-18 hours a day.
You can’t know the frustration of having a husband sleep in another room because I am awake 2-3 hours in the middle of the night watching tv, or on social media on my phone. Sleep eludes me or pain won’t let sleep so I am awake disturbing him.

It may sound like my marriage is unhealthy, but it is just the opposite. It’s better than ever. I never knew how much he loved me.

My husband has climbed in the shower to help me bathe, calls me to see if I have eaten and brings me food, he calls me from the grocery store to get a list. If I’m having a flare in the middle of the day, he or my daughter will leave work to be with me. They worry when I cry because I never cry. If I wake him at 2 am and I need to go to the emergency room, he is dressed in record time. That has happened a dozen times in the last 5 years. If he wasn’t able to take me for some reason there is always my daughter. She has given up days of work for me. Her boss understands and works with her.  For all of this, I am so grateful.
You can not see how much I miss driving to the store or taking myself to a restaurant. I have to wait for someone to pick me up be home. At this age I feel like a teenager waiting on my mom and dad.I have watched my daughter take on an authoritative role and I am the dependent. I hate this but at times it is what is needed. I am dependent on my family. They are #myarmy. 

You can not know how it feels not to be able to bathe myself or comb my own hair. This is not an all the time thing, but there have been spans of time where this is my reality. From totally put together to completely disheveled.

My despair is not constant, but when the depression settles in it comes with some dark thoughts. I have found myself thinking, Why am I here? What do I contribute? Am I a burden? Do I want to live?

That last question worries them the most. They assure me that I am wanted, loved….From what do they draw that conclusion? Don’t get me wrong, I am not suicidal but learning to be me in this skin has been tough. I will always share a smile, and a positive thought or phrase because I do believe better days are ahead. I do have faith and a belief that God and my family are reason enough to be here.
But my private thoughts aren’t always so bright.That is why you will never know how much I depend on a laugh, kind word, social media post a message on my phone….It is the simplest of gestures that get me through. They mean so much because someone took their time and energy to think of me when I can not always give in return.

So, that has become my purpose.  To be a beacon of happiness as best I can; to give back to others and to remind them of how they should be happy! There is so much to be thankful for and happy about. Lifting someone’s spirits because the same has been done for me is my mission.

“Never ever think your voice is lost in the universe….It is unique and needed…..You don’t know but I am listening for it.”
~Maria Anne Tripp Martinez

Reshared with Maria’s permission. Originally posted on patientworthy.com

Ask an Angel: School Age CRPS & Education

Education

My child has had CRPS for a few  years now! It’s in the foot, ankle, and hand but really bad with pain in their ear( permanent headaches, nausea, vomiting, dizziness, and fainting)!

They’ve started taking some medicine which really improved the joint symptoms; the pain is still constantly there but it’s easier to deal with. Then they have more medicines for a stomach pain and nausea and has been on medicine for migraines for 6 weeks now.

School
Going to School with Chronic Illness is hard, with CRPS it’s an Ineffable Challenge.

My child copes really well with these symptoms when they are all the time but when suddenly they worse, they communicate with the teachers at school that symptoms are extra bad and most of the time they are letting her leave the lesson.

  1. As a mom, how do kids cope trying to deal with this and going to school?
  2. What can I do to work with school (who are probably going to get fed up in the end) about the need to get out of class?
    1. I get the impression that they think that as soon as my child feels a remotely sick its communicated to them. But this is not the case, as my child actually feels bad constantly and only tells them when it has progressed to the point my child’s has blurred vision and head is spinning!!

Any advice on how to help would be really appreciated!

CRPS UK Conference

CRPS UK Conference

CRPS UK Conference

CRPS UK is a patient led non-profit organization which is applying for registered charity status. As part of our aim to support people with CRPS we are hosting our 3rd conference on November 14th, 2015 9:30 am to 4:30 pm where people can meet others with CRPS, learn about current CRPS research and treatments and hear personal stories of living with CRPS.

CRPS UK Conference
CRPS UK Conference

Our distinguished speakers include:

  • Dr Andreas Goebel whose research into CRPS and immunology offers hope for new treatments.
  • Professor Candy McCabe who has focused her research on the relationship between sensory and movement systems and pain in CRPS.
  • Richmond Stace, a pain specialist physiotherapist with expertise in treating CRPS
  • Danielle Brown MBE, a Paralympic and Commonwealth gold medallist with CRPS
  • Julie Weymouth, an expert patient volunteer who works at the RNHRD with people in the hospital for CRPS treatment.
  • And many more.

The event is to be held at the Hilton Hotel Bath and costs £35 per person including lunch and refreshments. The fee covers the room hire, lunch and refreshments; all other costs are being met by CRPS UK.

For more information or to request a booking form please email admin@crps-uk.org
If you’d like to add this conference to your calendar, click here:

Remember:

We’re all in this together. We have one life, let’s make the best of it and work for a universal “CURE” as A.M. Styles called it.

You are the Cure – 1 in a Trillion
You are the “C.U.R.E.” It is within you to be the C.U.R.E. (Create Uplift be(silent) Resilient Everyday). Once you know and accept that you have the “C.U.R.E” inside then you are now rebuilding yourself to be the “T.R.I.L.L.I.O.N” dollar person like the Six Million Dollar man. You can rebuild your life by “Trying it, Remembering it, Investing it, Living it, Loving, It, Owning it, Needing it.” Which is all part of life. We all are valuable we just have to know “IT” and believe IT. So when asked about a “C.U.R.E.” tell everyone that you are the C.U.R.E. and that you are 1 in a T.R.I.L.L.I.O.N.

Posted by A. M. Styles on Monday, October 12, 2015

Local Manitoba Meet Up

Manitoba CRPS Meetup

As many know we have our chats online to help those in areas who do not have local groups but we gladly share the local support groups on our support page. One such group is asking us to “Share and Make Aware” because they have gone above and beyond to try to make their first meet up as successful as they can so we’re doing what we can.

Manitoba CRPS Meetup
Manitoba CRPS Meetup

Manitoba CRPS Meetup

Chronic pain can be very isolating, so we are trying to reach as many people with CRPS in the province as we possibly can. To this end, I’m sending this email to disability accessibility offices, professional therapeutic associations, and medical clinics, among others.

Facebook has an upcoming local group for the Manitoba CRPS Community. Because pain is so personal, the group is a closed one, but we quickly accept new members.

They have organized an evening event for people with CRPS with a presentation and discussion led by Dr. Matthew Bailly, a clinical psychologist and chronic pain specialist.

There is a public event, their first, posted for you to sign up on Facebook or add it to your calendar by clicking here: . (You shouldn’t need a google calendar to save it.) The event is on October 22, 2015 from 6:00PM to 8:00PM, at the Henderson Public Library, 1-1050 Henderson Hwy, Winnipeg. There is no charge for this event and the library is fully accessible. There is parking in the strip mall where the library is located, and it is also on a bus route.

Please pass this information on to anyone you know who has CRPS, and they offer anyone interested in the local Winnipeg area to put this poster up on a bulletin board for others to see. If you can think of someone who could pass this information on to others with CRPS, please send this email to them.

Thank you all for being such huge supporters of each other every day. It really is a hard thing we deal with and we are proud to see such great things coming from our members. If you are needing to contact the planners please contact them via their Facebook event linked above or email us so that we can provide you contact information.

Can You Color the World Orange?

November 2nd is Color the World Orange Day!

Color The World Orange™
Color The World Orange™ follow them at: www.facebook.com/ColorTheWorldOrange

Color The World Orange™ is less than a month away, we here at RCDOM wanted to share some ideas on how to get involved in the second-annual event aimed at spreading awareness of CRPS/RSD.
The easiest way to be involved is to wear orange and post a picture to social media with the hashtag: #CRPSORANGEDAY.

Some ideas:

  • You could ask local businesses to have orange outfits on their mannequins.
  • Ask your family/friends to talk with their employers to have a everyone wear orange day?

For more ideas, see Color The World Orange™’s website or their Facebook post: