siren on emergency vehicle

How CRPS Is Like a Wailing, Screaming Alarm That Never Shuts Off

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One thing I’ve learned in seven years of living with complex regional pain syndrome is that there is almost no one in the regular course of my life who truly understands what constant, unwavering and intense pain really feels like. I am glad for that fact as I wouldn’t wish this on anyone, but it does make it harder for people to relate to my daily experience. So I am going to try to do my best to explain.

First, it may be helpful to explain, in very generalized fashion, what CRPS is at its core. Now remember, I am a patient, not a doctor, and nothing I am explaining should be considered medical advice or opinion. Basically, complex regional pain syndrome is a malfunction of the autonomic and central nervous system. The autonomic nervous system regulates fight-or-flight along with body temperature and other systemic functions. In CRPS this system gets activated and cannot be turned off, resulting in a feedback loop of pain signals.

 

The example my pain doctor gave me when I was diagnosed was to think of the big, initial flare of pain you get when you burn your finger or stub your toe, something everyone can relate to. Now imagine some crossed wires in your body become unable to turn off that warning system. That initial pain flare, enough to cause you to jerk your hand away from the flame, or jump around cursing your stubbed toe, never goes away. That warning system has now gone into overdrive – warning you of an injury that no longer exists. And it never stops trying to warn you. Ever.

One of the ways I like to explain it is that it is like a car alarm that malfunctions and can’t be stopped. It wails and screams its warnings and nobody has the code to turn it off. How long would it be before you felt yourself getting annoyed? Frustrated? Distracted? Overwhelmed? Angry? You can maybe close the window, or put earplugs in to try and lower the volume, or turn on the stereo or TV to try and drown it out, but you just can’t escape that wailing, screaming warning. You’ve been to the mechanic, many mechanics actually, and there’s nothing wrong with the car that they can find. They’ve run every test, tried everything they can think of to try to disrupt it, but the car just won’t stop sounding the alarm.

Now imagine you have to keep this malfunctioning car for the rest of your life and it is always within ear shot. You can’t walk away from it. It follows you everywhere. And the alarm never stops. Screaming, wailing, warning of an emergency that isn’t there… Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Feeling any stress or anxiety yet? That is CRPS in a nutshell. We can takes medication to help manage the pain or help us sleep, but it really can only serve to dampen the “noise,” if you are lucky.

Now I know any rational person would get as far away from that car as humanly possible, but that isn’t an option for me. That screaming, wailing warning is constantly in my head and in my shoulder, neck and back in the form of pain. Burning pain, stabbing pain, aching pain, stinging pain, crushing pain, simultaneously red hot and ice cold. And very, very, loud. There are other symptoms, too, but pain is the big one. And it’s intense. The most intense pain known to man according to the McGill Pain Index, a scientific measurement for pain created by McGill University in 1971.

For most people there is an inciting event such as an injury, broken bone, sprain or surgery, like me. In many cases it can spread to the opposite limb, up or down the arm, leg or spine, and can even spread throughout the entire body and internal organs. It can cause changes in skin color and temperature, excessive sweating, swelling, weakness, muscle spasms, altered hair and/or nail growth, muscle atrophy, short-term memory issues, depression, anxiety and the list goes on. Not everyone has every symptom and some symptoms come and go, but the pain never wavers. There is currently no cure. There are many treatments intended to help reduce pain and in some cases allow for full or partial remission, often temporary. But mostly treatment is aimed at managing pain and keeping or restoring as much function as possible.

It isn’t always easy dealing with the pain, weakness and disability that comes along with a CRPS life, but I do have my ways of getting by and enjoying some quality of life. I hope this helps people understand a little better what complex regional pain syndrome is and what it’s like to live with this horrible disease.

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Thinkstock photo via kyolshin.

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Why I Celebrate My 'Disabiliday'

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On April 1, 2017, I celebrated a new disability-related holiday — Disabiliday here in Winnipeg, Manitoba. I just entirely made up a holiday. I figure someone has to have started every other celebration, so why can’t I do the same?

Last year was my 15th anniversary of having complex regional pain syndrome, a severe chronic pain disease. With such a large milestone, I knew I could either get very depressed or make something positive out of it. It wasn’t something I could just ignore. Instead I chose to make a celebration out of it. I hadn’t just been in pain for 15 years — I was in pain for 15 years and was still going.

It became my Disabiliday.

The event turned out to be so positive and wonderful that I decided to hold a second one this year. I ended up making more progress this past year than I ever had, in terms of function and ability. I wanted to celebrate that as much as anything — that I’ve been in pain for 16 years and am now going somewhere. I don’t really know where yet, but I figure I have another year to figure that out.

I think Disabiliday could also be relevant to other people with disabilities. When you’re disabled, you can often feel isolated, or like you’re not having the same kind of lifetime milestones other people have. Maybe you can’t move out and have a housewarming, or maybe you haven’t had a long-term relationship with engagement and marriage and babies. Of course, plenty of people with disabilities do just those things and I’d never discount them or their lives — but I, at least where I am right now, don’t feel like I’m able or ready for them. And even birthdays can feel like you aren’t where you should be in life, especially compared to people around you.

So I wanted to do something new and different. I wanted something that fit where I am in life, where I am emotionally.

And thus, Disabiliday. A day to celebrate that despite the amount of pain I’m in, despite the limitations caused by my disease, I still am. I still have worth. I still have a presence in people’s lives. I am still going.

Surrounding myself with the support structure I’ve been so lucky and honored to have found in my life, I was able to sit back and take in just how many people love and care about me. Without them, I would never have gotten through so many years of pain. They’ve made the time worth it.

Disabiliday is a way of reinforcing my place in life. The place in my life, and in my family and friends’ lives. All of the often-invisible ways people care were made evident. It might seem silly to just make up a holiday out of nothing, but a terrible pun my friend came up with to have a “Disabilitea Party” has become so much more. If I’m going to make up a celebration, I might as well get a full day out of it.

And it was a lot of fun too. I got my hair and makeup done at Sephora and Mario’s Salon (now Aura Polo Park) respectively last year and felt amazing once I was all made up. This year I got my hair highlighted, trimmed, and makeup all done at Aura Garden City. It’s superficial to some extent, but I felt so much better once finished. It’s an external thing, but that doesn’t mean it doesn’t matter.

Last year we went to Sam Po Dim Sum and also introduced all of my non-Jewish Winnipegger friends to the deliciousness that is a shmoo torte from Gunn’s Bakery. It’s a layered angel food and whipped cream confirmation that’s North End of Winnipeg Jewish tradition.This year I upped my game with a wonderful dinner at Kildonan Park’s Prairie’s Edge restaurant and a cane cake from Dolce Bake Shop.

I’ve used two canes for quite a few years now (when I wasn’t in a wheelchair), and I’m finally starting to walk on my own. In fact, I made a great entrance to my party by walking in. That alone made the night amazing. But I wanted to step it up. I went to this awesome bakery (I recommend the chocolate cupcakes with pistachio buttercream icing) and had the pastry chef make a custom cake for me — a replica of one of my canes.

And man, did slicing that thing up feel good!

Cake shaped like a cane.
Cake shaped like a cane.

Other highlights of this year’s Disabiliday party included a featured guest, my physiotherapist Maria Pawlyshyn of Movement360 Inc. She is a huge part of why I’ve made so much progress this past year. Working with her, I’m doing better than I ever have since developing complex regional pain syndrome.

Other features included a dinosaur balloon- a DisabiliT-rex of course (I hate myself for these puns just as much as you do) — and a truly stunning purse my mom and I designed and she made for the event. We’ve made a lot of purses over the years, but this one has to be one of the best. Just really gorgeous. The writing on the front of it is my handwriting.

We also filmed the Disabiliday parties for a documentary Dr. George Fulford of the University of Winnipeg and I have been filming for a few years now, with the assistance of Steven Mellor for sound. Originally meant to be the first of a series of five minute videos of young adults with disabilities, this project has ended up capturing the huge amount of progress I’ve made over the past couple years. I was at my worst when we started this project and I’ve made such huge gains. To actually walk on my own — I never expected to do that again in my life.

DisabiliT-rex.
DisabiliT-rex.

In other bragging about things news, my best friend got me the most amazing sets of rings for a Disabiliday present. This isn’t quite as materialistic as you might think. For many years now, I’ve developed open sores and wounds all over my body. My doctors think with the amount of pain I’m in, always, the skin has gotten very weak and opens up into wounds. I don’t do anything to create them — they just open up without any influence or action on my part. They eventually close up but leave scars. Even though the scars eventually start to fade, it doesn’t help because more new wounds have already opened up.

To detract attention from my wounds, I wear lots of rings (and makeup) to both cover up wounds on my fingers and attract attention away from wounds on the rest of me. My friends know this, and the rings really do mean a lot to me. Plus they are adorable and I totally love them.

So Disabiliday does really have some meaning. One one level, I realize how weird — and how self-important — it is to make up your own holiday and expect people to celebrate it. On another hand, this matters to me, and my friends honestly do support it. If it makes me feel better, if it doesn’t harm anyone else… why not?

Finally, I want to thank Prairie’s Edge for hosting us, Dolce Bake Shop for a delicious cake, and Aura Garden City for totally making me over.

And I really want to thank my best friend, Eryn Schor for not only organizing both of my Disabiliday events, but actually sticking around for the better part of five hours as I got all made up. Now there is a truly loyal friend! She means so much to me and has been by my side since we met in elementary school. Without her, these events would never have happened.

Thanks also go to Dr. George Fulford for filming the whole event – and for filming my life over the past few years, and to Steven Mellor on sound. Dealing with that boom mike was not easy!

And lastly, thanks to my parents. My dad was unable to be in town for the event, so we got him on Skype on a phone to take some family photos. With my parents, all of my friends, and my health care providers, with all of their love, care, support, understanding, work, and through their thought, research, and education, I can truly say that despite the amount of pain I’m in, the past 16 years have been entirely worth it.

Happy Disabiliday!

This story originally appeared on Pain Matters.

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My Advice to Patients as a Physician With CRPS

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I am a physician and I have complex regional pain syndrome (CRPS). My diagnosis came after a car accident followed by neck surgery. It took two years for someone to finally confirm my diagnosis. Now, instead of being on equal footing with my colleagues, I was trying to explain how the smell of pineapple and strong perfume made my pain worse. How my children couldn’t walk across the floor too loudly or rain drops hitting my arm made me scream. When the barometric pressure dropped I became completely nonfunctional. Pharmacies I used to call prescriptions in to were now treating me like a drug-seeker, often making it very difficult to get my medication. I was used to dealing with this for my patients but the fear each month of possibly not getting my medication continues even now, six years later.

I worked for three years after my symptoms started. At the end I was lying on the floor between each patient. This was a practice I built. I knew each and every patient by name and most of their families too.

Like many stories I have read, what my doctors didn’t give me was a true, realistic picture of CRPS and what to expect. How will it impact my life? What are the long-term consequences? How do I adjust my life? How do I deal with pain flares? Not one doctor knew that every single form of recreation I had ever known had been taken away. No one asked. I had exercised five days a week since my teens and now I couldn’t. What should I do? No one ever told me we can’t fix this. No one ever set realistic expectations.

Truth be told, our training leaves us poorly equipped to do a lot of this. This is no excuse. As a physician, having a patient with a particular illness is by far the best learning experience out there. Obviously we have to know what we are doing prior to treating you, but listening to the patient, hearing their experience and listening to their needs is where the fine tuning in our training comes in. What I am saying is I hear you all when you say your physicians let you down in some ways. What I am asking, of people who already fight too hard, is please understand medical knowledge doesn’t compete with real life experience. Please tell your doctor exactly what you need from them. Share your symptoms and how bad they truly are. Share what works for you and what resources you find helpful. We as physicians can be your biggest advocates but sometimes forget that even though we can’t fix something, we certainly can make it a lot more tolerable by listening, acknowledging your pain, encouraging you to keep going and researching information you bring to us.

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Thinkstock photo via Wavebreakmedia Ltd.

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If My Life With CRPS Were a Skit From 'The Muppet Show'

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If my life were a skit from “The Muppet Show” it would definitely be the one where Kermit the Frog is reporting news from a different planet.

This is Kermit the Frog reporting from Planet Koozebane. Water found on the moon [a long hose from the moon connects to a sprinkler on Koozebane but it is so far away only single drop reaches the planet]. In other news, humans have spent millions of dollars and countless man hours in pursuit of alien life forms. Why didn’t they just look her up in the white pages? *[insert photo of me wearing earmuffs at the pool]

Kermit’s report of an alien wearing earmuffs at the pool is a true story, though I am technically not an alien. I am a human — a mother, wife, daughter, sister, friend — but some of the things I have to do to cope with my disabling condition makes me look odd. I have complex regional pain syndrome, a rare and painful neurological disorder that affects my upper extremities, ear, and face.

In the summertime, I have to choose between the pain of the cool air on my skin and the pain of covering the affected areas. I wear earmuffs, headbands, and arm wraps in the house because a single draft of cool air from the compressor can be excruciating. If I go grocery shopping, I have to stay away from the open coolers of meat, dairy, and frozen foods. When I go to the doctor’s office, I have to move my chair so it is not under the air conditioning vent and pray he is running on time so I can get out of there quickly. When I’m visiting friends and family, I have to ask them to turn off their ceiling fans and close the windows. When I’m riding in a car I close my vent, but the air deflecting off the driver is unnerving and feels like my skin has been filleted and stuffed with dry ice.

I am no longer able to work, but when I was still working I was in the process of obtaining a permission to use a service animal to help me cope with the debilitating arm and facial pain. The idea was to use the service animal to would provide a source of warmth (the animal’s body temperature remains stable at 101-102.5 degrees) and the sensation of its fur to help desensitize the painful areas. At the risk of looking like a pirate with a parrot perched on my shoulder, I was willing to try anything to make it possible for me to continue working.

service animal lays on woman's face

With the earmuffs, arm wraps, unwashed hair, and an animal laying against my face, I realize I sometimes look like I am from another planet. I can easily imagine that Kermit could find many interesting observations in the ways we, each of us, cope with our health issues. On Planet Koozebane, there are a lot of unusual specimens with remarkable traits and behaviors. There will always be people who look at our situations and form opinions about what we do and why. We can’t change that, nor should we spend the time and energy to try. As they say in biz, the show must go on!

“It’s time to play the music. It’s time to light the lights. It’s time to meet the Muppets on the Muppet Show tonight.”

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When Money Is More Important to Hospital Administration Than Saving a Rare Disease Patient's Life

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On April 5, 2017, I went in for a surgery, which was to expected to be a successful and smooth outpatient procedure. When I woke up, I was hit with horrible pains from my complex regional pain syndrome (CRPS) and spasms from my super rare disorder, Stiff Person syndrome (SPS). I can’t say I didn’t see that coming though. However, my medical team will ill-prepared to deal with my complex needs.

The best part was that my head, which was the area they cut open and drilled into, didn’t even hurt. Oh, the irony! Afterwards, I got X-rays taken to confirm everything went well and all was good. They got me up to my inpatient room and I was OK for a few hours. Not pain-free, but it was manageable. At about 7:30 that night, the wall of CRPS pain and SPS spasms hit me like a Mack truck. I sobbed and sobbed as I shook and spasmed all night. They offered me a painkiller, which I turned down because it doesn’t work for my CRPS nerve pain. The nurse and charge nurse were baffled and felt so horrible as I shook and spasmed for hours, sweating so badly the bed was soaked. I struggled to breathe due to pain and diaphragmatic spasms and my heart rate soared to the 170s while my blood pressure dropped. This continued for about 14 hours because the doctors didn’t know how to deal with my rare conditions. Eventually, one of my old doctors was permitted to step in and help me out. He prescribed the medications I needed at the dosages I needed and got my custom compounded medicines approved. I quickly started to stabilize. However, in the process, he put his job on the line to help me, to give me a standard treatment, because saving me was more important than what the hospital administration thought.

You see, the hospital administration doesn’t let him treat rare disease patients because one of his most successfully used treatments isn’t profitable enough for the hospital. Therefore, over 700 patients with rare and chronic illnesses were left to fend for themselves. Over 700 kids and young adults don’t have access to life-saving treatment because it doesn’t make enough money. I get that money is important, as medicine is a business too, but what is the purpose of a hospital if it can’t help patients?

I ended up having to stay a total of six days after my “outpatient surgery,” but it would have been much worse if the doctor hadn’t gambled his job and helped me. Simply by being my doctor, he could have lost his job. Why must doctors who are only trying to act in the best interests of their patients have to risk not having a job because they were the one individual who could help the patient or save their life?

While this is my experience (and one I’ve had many times before at a variety of hospitals), this is not an isolated problem to my local hospital. Brilliant and well-respected doctors trying to help their patients often have their jobs threatened each time they agree to help rare disease patients. This is not OK, and more awareness needs to be bought to the issue. Alone, we are rare, but together, we are many!

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Thinkstock photo by sudok1

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5 Tips for Evaluating Health and Disability Charities

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Tax time forces many of us to look at where we spend our money. When I was working, I was able to take care of my family and financially support a few non-profit organizations with small cash donations. I gave a little money to a lot of organizations, but I did so without really knowing how the organization was using my money. For many years my benchmark was simple; if an organization asked, and if I believed they were doing good things, I made a donation at whatever level I could.

My finances changed dramatically two years ago when my battle with complex regional pain syndrome and cluster headaches forced me to stop working. I’ve realized how important it is for me to learn about the organizations I choose to support with my limited time and money. Simply put, I need to think like an investor, not just a donor. A donor gives because they are asked, but an investor gives because they know and care about the organization’s long-term future. As an investor, I have a duty to learn all I can about what the organization does, who is in charge, where it gets its money, and how they spend it.

It is not always easy to find reliable information about an organization, but if you know where to look, a short online search can give you a wealth of information. Here are some tips that investors in non-profit organizations may want to explore:

• Search their website. Consider an organization’s website as the front door to its operations and core mission. A disease-related organization’s mission, for example, might be to provide support for those affected, education about the disease, and research to find a cure. An organization must be accountable and transparent to its investors and their website should provide an annual report of its accomplishments from the previous year and goals for the next. You will need to review several annual reports to evaluate if the organization is making progress on the previous year’s goals.

• Download their tax returns. Examine the organization’s tax returns to learn about how they operate, where they get their funding, and what proportion of their money is spent on programs to help people versus administration and fundraising. There are a few exceptions, but most non-profit organizations’ tax returns are public information, meaning anyone can inspect them. I find ProPublica  to be the easiest place to find these documents. When you compare two or three years of the organization’s tax returns, you can get a sense of the organization’s financial stability over time.

• Identify their funding sources. In order for an organization to remain financially healthy, it must seek funding from different types of revenue streams, such as grants and corporate and individual donations. For example, an organization may accept donations from pharmaceutical companies or charge membership dues or fees to attend their events. Investors need to know where the organization gets its money. If the organization is growing and thriving, you will see a steady increase in the money they bring in (revenue), the money they spend (expenses) will remain proportional to their revenue, and their bottom line (net assets) will remain stable from year to year.

• Learn where they are spending their money. There are well-established benchmarks for how much of an organization’s budget should be spent on direct programming versus administration and fundraising. Organizations should be spending at least 75 percent of their revenue on programs that benefit their members and less than 25 percent of their revenue on overhead. As a reference, Charity Navigator publishes an annual report of CEO pay that finds mid-sized organization pay their CEO’s in the low $100 thousand. Regarding fundraising, the Better Business Bureau’s accountability standards for indicate fundraising expenses should not exceed $.10 to $.35 per dollar raised. As an investor, we want to see these figures as low as possible and ensure they are aligned with organizations of similar size and type.

• Engage with the organization at all levels. If an organization is worthy of receiving your financial support, it should also be worthy of receiving your time and talent. Volunteering for the organization is an important way for you to increase the value of your investment. Non-profit organizations depend on volunteers to help them run programs, raise funds, and promote awareness. When you find the right organization, consider pledging a monthly, rather than a one-time annual donation. Large foundations who offer grants to organizations want to see repeat donations because it is an indication of a healthy, growing organization that is capable of using their grant money effectively. Staying involved with an organization helps ensure your investment is used to its fullest potential.

As a person with a disability, I have too little time and too little money to waste on an organization that is not using its resources wisely. In the past, I made donations to organizations because they asked, and because I believed they were doing good things. In the future, I am determined to raise the benchmark for who I support. As investors, we are in a unique position to help ourselves by helping others. Each of us have the responsibility to learn everything we can about an organization and to use our power as investors to make positive changes within an organization. It will take a bit of effort, but once you have found an organization that is a good fit for you, please share your research and experiences with others in your community. Together, we can make our money work for you, me, and us.

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Thinkstock photo by Echo EVG.

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