Teenage Female Patient In Hospital Bed Using Cellphone

You Know You're a 'Hospital Kid' When...

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When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count.

When I was in high school most of my inside jokes were with physicians who liked to dance every morning. I got excited about making toga costumes with hospital sheets and having photo shoots with the other girls in the clinic. My main priority, aside from going home, was befriending the nurses so they would steal pillow cases for us to tie dye or extra ice cream cups at lunch.

Every so often I reminisce with a few close friends, who I met in the hospital, about out “those days.” Many of us are in remission or have found ways to cope with our illnesses outside of frequent appointments and emergencies. Others are still struggling, but have an amazing network of family, friends, and doctors who are there to support them every moment of their journey.

There’s something special and unifying about being a “hospital kid.” There’s something comforting about knowing that other people “get it.” There’s a relief that comes with not having to explain yourself. There’s a sensation of belonging that is revitalized every time I text, “I just smelled Purell” and get a response that reads, “OMG yesss” or “I know what you mean.”

When I was talking with my friends, I realized we all had fond memories of our nurses knowing our favorite shows, what we were studying in school, or which activities we were excited to go back to! We all had jokes about which arms or veins were best for blood draws and IV’s. We were all confident we could navigate the hospital so well, perhaps better than our own towns, that we could give directions to other people even to this day; most importantly we knew approximately five ways to get to the cafeteria!

So, when I asked my friends to respond to the phrase, “You know you’re a hospital kid when…” here’s what they said:

You know you’re a hospital kid when… 

1. Your biggest allies are the nurses.

2. You almost always anticipate that your plans will fall through because of an unexpected trip to the ER (or an appointment you forgot about!).

3. Random things like the smell of Purell, concrete staircases, or writing your order with a golf pencil at restaurants remind you of the hospital.

4. Your best friends are people you met in the hospital, and over a decade later you still keep in touch.

5. You laugh whenever someone asks you to rate your pain on a scale of one to 10.

6. You’ve perfected realizing when someone isn’t really “fine” because you too perfected looking “fine” when you’re not.

7. Even though it’s a bit twisted, you get excited if you learn someone has the same condition as you.

8. Getting blood drawn or an IV is “no biggie.”

9. You watch “Grey’s Anatomy” and scream at the TV because that would never happen in real life!

10. Your hospital stories are so intense or dramatic that most people don’t believe you or think you’re exaggerating (e.g., “I relearned how to walk twice by doing PT/OT for eight hours a day for six weeks – twice! It was more difficult than the conditioning we do at gymnastics practice.”)

11. You can explain the spoon theory with more accuracy and detail than your actual homework!

If you ask most hospital kids, they’ll say their upbringing inside the walls of the hospital was definitely not traditional! They’ll probably tell you that they’d never wish chronic illness on anyone, but in hindsight they can’t imagine their lives without their stories of medical struggles and victories. Our illnesses don’t have to define us, but the definitely shape who we are and how we encounter the world.

Want to participate in the conversation? Add your thoughts in the comment section! There’s incredible power in connecting with others and realizing we’re not alone!

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Thinkstock photo by Monkey Business Images

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How I Participated in the Women's March When I Couldn't Physically Attend

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Last weekend I participated in the historic Women’s March that occurred throughout the world — but probably not in the way you imagine.

As excitement and enthusiasm for the march swept social media, the feeling of being excluded washed over me. While I watched women making plans to travel to Washington D.C. or attend a sister march closer to home, I couldn’t help but feel completely left out. Among the information being disseminated through various social media platforms, blogs, and meet-up sites, I was unable to find material about accessibility for women living with disabilities or illness wishing to attend.

As a woman living with reflex sympathetic dystrophy syndrome (RSD) I felt it was important that among the sea of worthy causes being championed, that chronic illness and disability be represented and made visible at the march. However, my current health challenges prevented me from attending physically. How could I participate and feel like I’m contributing in some way?

After scouring the internet, I was left feeling dejected. I was unable to find an organized effort to highlight the disabled community and those of us living with serious chronic illness.

It wasn’t until just days before the Women’s March was set to commence that I was connected to a group called Suffering the Silence through a fellow spoonie friend. I was elated when I saw their #MarchingWithUs effort to connect women unable to attend physically to a march due to illness or disability, with women who would represent them by pinning their photo banner to their coats!

sign that says #marching with me and a photo of the author

With just days to spare, I signed up and was paired with two women; Siobhan who resides in Los Angeles and would be attending her city’s respective march, and Brenna from Chicago, with plans to travel to Washington D.C.

I connected with both women via email and social media before the march. Brenna is a writer and performer from Chicago who initially had plans to travel to New York to meet up with her friends and then make the trek to D.C. When their bus, which was set to transport many women down to D.C. for the march, didn’t show, they made the decision to attend a sister march in New York City.

Through my chats with Siobhan, I learned she was a 27-year-old artist and cancer survivor. Diagnosed in 2014 with brain cancer, the last several years had been filled with surgeries, radiation, and chemo. She has been out of treatment for nearly a year now, and shared how privileged she felt that her illness allowed her to march on behalf of all women who are sick. With my banner pinned to her back, she carried the sign she designed proclaiming “WE ARE SICK”  and helped elevate the visibility of our community which grossly lacks representation.

woman holding sign that says we are sick

I was truly honored to be represented by both these women. With the help of my fellow sisters, I was able to contribute in a small way to raising awareness for a group I identify with, which is often forgotten and marginalized.

paper banner of the author's photo with text Marching With Me

I’ve kept in contact with Siobhan since the march, and she’s shared how disappointed she was that in a crowd estimated to be nearly 750,000 people, and over seven hours she did not see another #MarchingWithMe participant or representation for sick or disabled women.

We have to do better.

People living with chronic illness and disability are members of all communities, regardless of race, gender, religion, or political affiliation. We are here, and we deserve to be heard and represented. It’s critical that those committed to social justice give voice to our community, and help make visible those who are often made to feel invisible.

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Why I’m Tired of Writing About My Disorder

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I am 20 years old. I am a college student. I am studying journalism and media studies and theater arts. I am a gymnast. I am many things, but I am not my illness.

I have recently been writing blogs and articles for The Mighty and for the Reflex Sympathetic Dystrophy Syndrome Association about my experience and journey with my chronic illness, reflex sympathetic dystrophy syndrome/complex regional pain syndrome. After each article comes out, I am constantly overwhelmed by the amount of support I get from not just my friends and family, but also from the RSD community. People have told me that my articles have helped others with RSD and without to better understand it. However, it is always followed by, “When is your next RSD piece coming out?” Everyone automatically assumes that all I write about is my disorder.

Now I realize it is somewhat ironic that I am writing a piece about my chronic illness and not wanting to write about it. But it is still important. As a journalism student, I do a lot of writing. There are so many interesting things to write about, yet I always choose to stick with RSD. One of the main reasons I write about my disorder is to spread awareness and help others better understand what RSD is and what I go through. I oftentimes struggle to talk about it face-to-face. But now I feel that everyone thinks that my RSD defines who I am. But I am mostly tired of writing about RSD because it makes it harder for me to separate who I am from my illness. And that to me is terrifying.

I lived a “pain-free” life for 12 years. It wasn’t until 2008 when I got my injury that lead to my RSD. And then past that, it took another five years for me to get diagnosed. I would be lying if I said that in those five years, I did not change based on how anxious I was to find an answer as to why I was always in pain. Looking back on it, I can see where I lost sight of who I was. My main focus for so long was trying to find an answer. When I finally did, everything changed. I tried to hide it from people, pretend that pain did not exist in my everyday life. In my experience, when I share my RSD with new friends, that’s all they want to talk about. It makes me wonder if that’s all there is to me. Maybe being in pain is what everyone knows me by. Yes, obviously being in pain every day has changed how I do things and changed my outlook on certain situations. But has it really changed who I am?

No one should be defined by the struggles they go through. I do not want anyone to read my articles and feel bad. There have been so many times when friends have asked me, “How do you do it?” and “How are you always happy?” I purposefully pretend that nothing is wrong just to avoid thoughts like that. The more I hear this, the more I question myself. I went from never telling anyone about my condition, to feeling obligated at some points to tell people that I am in too much pain to move. I start to feel that my loved ones get tired of hearing the same thing over and over again. Writing these articles just adds to the discussion. How are people not tired of reading about my RSD? This belief pushes me into a shell and prevents me from telling my friends when I am in need of help.

Then a terrible thought crosses my mind and makes me question if my friends are being honest with me. I have lost friends because of my disorder. They no longer wanted to deal with me. I was a burden who wasn’t able to do everything everyone else could do. I get it. You cannot even being to imagine what my pain feels like. You aren’t living my life; you are simply watching me get by. But instead of giving me the cold shoulder, how about you attempt to think about how life is like walking in my shoes. Believe me, that walk would be excruciating.

Sometimes I will even try to make myself believe that I don’t have RSD. I want so badly to not have it identify me that I make an effort to ignore it. This usually does more harm than good. By thinking like this, my entire mood changes and I get angry with myself. Everything good seems so far out of reach and the idea of living a pain-free life feels impossible.

At that point, curling up into a ball seems like the best idea. I don’t expect anyone to understand why I feel the need to step back and just close my eyes. It’s very easy for me to get overwhelmed and frustrated. My friends who witness this try to help and I usually just shut down. I would like to apologize to them. I know it’s not easy to be around me when I am like this. But know that I do hear you and appreciate everything you say. I don’t want that to be who I am. The more it happens, the more I fall into that thought of letting my RSD define who I am and what I do.

handwritten note that says don't let your struggle become your identity

Through all of my struggles there are things that I love about my articles. I have had so many people reach out and tell me how helpful my articles were to them. Others use the words inspirational and encouraging to describe me. My writing has connected me to other members of the RSD community and helped me feel like I should not be ashamed of my disorder. Although I am tired of writing about RSD, I will never stop. This chronic illness is a part of who I am and affects my life. I can try to hide it all I want, but the reality is, nothing will make it go away. The best thing to do is to embrace it and use it as a platform to help others who have the same struggles as I do.

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4 Lessons My Rare Disorder Has Taught Me

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Earlier today, I was on my own and went for a walk. I woke up in more pain than usual but decided that it wouldn’t stop me from getting outside. If I hadn’t, I’d have spent my time — like most Saturdays — in my pj’s, wishing I’d had more energy to do something. Not that there’s anything wrong with that. But the weather will keep on changing. Colder isn’t better for me.

Anyway, there I was, walking along the park and feeling pretty good. I started thinking about new blog ideas and articles that need finishing touches and my schedule for this week. As I reflected on the goings-on in my online group, I realized we often revisit core points that affect all reflex sympathetic dystrophy syndrome (RSD) warriors. 

Lesson #1: People need people.

After my diagnosis, not only had no one in my life heard of RSD, but I couldn’t even find a support community focused on it. The nearest thing to one was a chronic pain group. It was not supportive. Everyone was deeply depressed and showed no hope at all. That’s normal, of course, to some degree. But the leaders did nothing to encourage us and to show us ways to try to feel even a little bit better.

Of course, there’s no way to instantly feel better. I know that. But the folks that headed up the group made no effort to help us cope. I stopped after two sessions. It was a difficult trip out there anyway. At least that’s what I told myself as I slipped back into my isolation. The truth is you can sit in a room full of people and still feel alone.

I have a wonderful family, a lot of support and I am so grateful. But it was next to impossible to really describe what my body was going through. That’s why it’s so important to find a good support system within the community. A perfect example — especially for folks who are less mobile or geographically isolated — is an online support group. Ideally, the group will share their experiences, good and bad, but also offer hope.

As I’ve said it in other blog posts, I would have given anything to have found a dedicated RSD patient group when I was first diagnosed. I was working as a registered nurse at the time, and no one knew what I was talking about. I think that scared me more than hearing the doctor tell me exactly what was wrong. None of the doctors and nurses — all from different departments — knew what RSD was.

Then I started getting looks of pity: “She’s got some weird disease.” Oh, help! It was more than a decade before I really had the chance to interact with my fellow RSD warriors. The closest I came was seeing folks during the annual Achilles Walk for Hope & Possibility in New York each summer. Then my back and legs got worse, and I wasn’t able to attend. I believed I could walk without pain. Or if I did feel pain, then it would be worth it. My family finally convinced me that, with my pain levels out of control, the event would hurt more than help. So I stayed home. 

In terms of friendships we already have, just offering a kind word and normalcy is great. Don’t disappear on us, unless being friends with someone who’s in chronic pain, possibly disabled and trying to cope every day is too much for you. Then it’s absolutely OK to phase out. It’s better for everyone involved. Some might not agree, but I prefer honesty. It’s unhealthy to force a relationship that benefits no one. 

Lesson #2: Hope and joy help us cope.

There’s something to be said for believing that things will get better, even though we have no way of knowing if they will or won’t. Believe me, I don’t always walk around like “Polly Positive.” But I try to keep upbeat people around me. If you make me laugh, we will be friends. If you’re perpetually negative — a “Debbie Downer” — I’m sorry! I’ll chat for a moment, but we will not be getting coffee anytime soon. It’s not personal, it’s for my health and well-being — and yours.

None of us need constant reminding that our health is a problem. Believe me, we are well aware of that fact. Maintaining hope is crucial for me. Maybe it’s not even hope for a cure or major changes in my health. Maybe keeping hope for a good day, a funny Facebook post, for a night with more than an hour of sleep — maybe that’s enough. Hoping for the little things. Taking time to be silly and laugh. That’s enough. At least for me. I’m not an unrealistic person, but I need an incentive to move sometimes. Hoping helps me to do that. Allowing ourselves to have fun and sharing good experiences enables us to focus on something besides the topic that consumes us most: our health and well-being.

Lesson #3: Aggressive suggestions don’t always come across as helpful.

“Poor you. Have you tried (fill in suggestion here) because it really helped my best friend.” “I can’t believe that didn’t work for you! My sister said it always works.” Maybe folks who say things like that aren’t aware of how unhelpful those comments can be. They are, at times, toxic and unsupportive. And they make us feel worse. Comments like that — depending on how they’re made — don’t offer hope or help, they’re chock full of judgment. And that we don’t need.

I’ve had many interactions with people who, rather than making a general, well-meaning remark, make an accusation instead. It’s “Have you tried?” versus “Why haven’t you tried?” Maybe we have. Maybe we haven’t. Many of us have spent a long time finding combinations of treatments and meds that work as well as possible. It’s a lot of trial and error. I can’t even remember all of the meds I tried that didn’t help. Thankfully, after more than seven years of mixing and matching, my docs landed on a combination that really works — a plan I’ve followed for six years.

I’ve been lucky. I can say that now, but back then it wasn’t easy. And I’ve recently discovered that the lupus med I was able to take without problems 18 years ago doesn’t agree with all of the other meds I have to take every day. So when the lupus flares, as it has been for about a month, I’m in a watch and see situation. That’s an unexpected fail. But so far — knock on wood — I’ve been managing OK.

Most people are kind and genuinely mean well. And, honestly, many great ideas are passed along in our groups — things we haven’t known about that are amazing. It’s the people who believe they’ve hit the Holy Grail of 100 perfect perfect treatments — and somehow express that no other option is right — that concern me. 

Lesson #4: We’re still us.

Believe it or not, we’re still the same amazing people that existed before RSD. We’re just managing life differently. It’s far too easy to forget that. Even we forget it! 

I’ve sewn for most of my life, creating little crafts here and there. I loved making my daughter’s Halloween costumes. About six years ago, I began designing and styling costumes for a middle school dance program. It’s given me a creative outlet but, more importantly, a purpose outside of my home life. And I needed it. We all do! 

It becomes common to view ourselves in one light — as patients. But we’re complex individuals who love cooking, seeing movies, extreme sports and whatever else we enjoy. We’ve had varied careers, ambitions and plans. Although our abilities may have changed upon diagnosis, we haven’t! I started to look at myself as one massive medical problem, and one bad thing after another just compounded that feeling. Over 18 years, my self-esteem lowered substantially. Gradually, I lost myself in that negativity.

It’s taken a long time to shake that low sense of self. Yes, I have lupus, RSD and arthritis. Ok, so I have arachnoiditis and a hole in my heart. Yes, I take meds to function well. So what? I’m still a creative person. I’m a wife and mom, a daughter, sister and friend. I belong to a great online support community. I’m a blogger. I am more than my hospital chart describes. So are you.

Try to see past all of your medical issues and remember the true you. Even if it’s just a little peek, don’t forget to share yourself with the world. You’re worth it. There are other lessons. My eyes are open. I’m ready to seek out new adventures as my complete self.

And I look forward to learning about your journey, too. After all, we’re in this together. 

Follow this journey on painintheBECK.

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Lead photo source: Thinkstock Images

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What I've Learned About Accepting My Chronic Illness and Disability

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I’ve always felt pushed to live as “normal” as possible. Whether it be the latent forces of our ableist society, advice from friends or family, or my own internal dialogue, focusing on acceptance and embracing life with chronic illness and disability was never something I considered much.

Becoming sick and subsequently disabled at age 23, a time when most of us are still wading through the new challenges of adulthood and seeking comfortability within our own skin, I had no idea how to integrate my new identity as a “sick chick.”

Now officially a college drop-out and unable to work, what was I to do? Twelve years ago, support for those who were chronically ill and disabled was scarce. My peer group was comprised of healthy, able people who had never faced complex health challenges, let alone a serious diagnosis like reflex sympathetic dystrophy (RSD), also known as CRPS.

Well-intentioned friends and family encouraged me to be as normal as possible, with a heavy emphasis of hiding or concealing both the physical and emotional challenges I was experiencing. Their advice was born out of concern that I would be treated poorly, differently, or even discriminated against if people knew about my health challenges.

Heeding their advice, I made a tremendous, daily effort to conceal the physical and emotional effects of RSD/CRPS. I hid the edema and color changes with long clothing. Special makeup tips were garnered to hide the effects of pain-induced insomnia. Assistive devices were used as sparingly as possible. I pushed myself physically sometimes to the point of vomiting from the pain.

Any anxiety, sadness or despair I was experiencing was masked by a capacious grin and over-the-top positive attitude.

Outwardly, I was winning. While the world saw a young woman who had adjusted well to her diagnosis, internally raged a constant struggle of wanting to eviscerate RSD/CRPS from my life.

A part of me firmly believed if I was the perfect, compliant patient and pushed myself physically and emotionally on a daily basis I could make this all disappear on my own volition.

Acceptance was necessary, but in my self-made world of repudiation, acceptance equaled defeat. And that was one equation that would take years to solve.

When a good friend of mine wanted to set me up with her brother-in-law, I met her idea with a resounding refusal. It had been 11 months since my RSD/CRPS diagnosis, and I had finally resolved to the fact that I would die alone, partnerless. A year’s worth of grueling medication trials, physical therapy, and interventional treatments had taken a toll on me, and the facade of everything being OK was beginning to crack. My ability to keep up appearances during the now dwindling encounters with family and friends was ebbing. How could I even think about dating?

I was suspended in a state of pseudo-acceptance. I certainly hadn’t accepted my diagnosis, nor the fact that I was disabled. What I had accepted was the myth that I could not live a fulfilling life with RSD/CRPS.

As the world continued on seemingly without me, thoughts of wanting to check out drifted in and out of my consciousness. It became incredibly painful to watch my friends do all the things I was supposed to do: graduate from college, travel the world, get their dream job, and meet their life partners.

Despite the incessant rejection of my friend’s desire to set me up with her brother-in-law, she accomplished her goal through a careful plan of trickery which I would later come to praise her for.

Under the ruse of wanting to have a girl’s poker night at her home, I mustered up enough will to attend. Not wanting to expend energy on some of the usual exercises in concealing the physical effects of my illness, I threw on an old hoodie, tied my wet hair back in a bun, and abstained from my usual spackle makeup job to cover up my insomnia-induced under-eye circles. Coupled with the velcro flip flops I was now begrudgingly wearing because of swelling, I was the antithesis of cute.

When I showed up, it was my friend, her husband, and the man she had been trying for months to set me up with. As I came in, I shot her an epic stare befitting the swindler she was and began to prepare myself for an awkward evening.

To my surprise, we hit it off. He himself had faced health and disability challenges as a child and seemed to understand firsthand what I was going through. Despite my pessimistic and dismissive position, I reluctantly accepted an invite for our first date.

On the day of our first date, I frantically spoke to several friends on what to do with my shoe situation. We were going to a trendy restaurant, and ugly flip flops would not be copacetic. I was so embarrassed — not only was I limping badly and would need help navigating stairs, I was dressed nicely but had to wear these horrific flip flops. As I contemplated cancelling, friends encouraged me to force my feet into a pair of shoes and deal with it. But it was my younger sister and roommate at the time who was the voice of reason. “Noelle, your foot is three times it’s normal size. It’s these flip flips or barefoot. If he’s embarrassed of that then he’s not the guy for you.”

He turned out to be the guy for me, and we were married four years later. Through my relationship with my husband, I was able to recognize that if he could accept me, chronic illness, disability and all, others could too. Maybe one day even I would.

The distress I experienced over which shoes to wear on our first date was analogous to many other areas in my life. It was never really about the shoes but more about me not accepting my chronic illness. It took many more experiences over several years to quell my insecurities and foster an environment of acceptance.

I’ve spent years working on accepting living with chronic illness and disability. It’s taken real work and patience by myself and those closes to me.

Acceptance is fluid and a lifelong process. It is not static nor fixed. Acceptance does not require you to submit to your illness or dismiss your sadness, grief or fears. In fact, acceptance is acknowledgement and the very permission to experience all those things without shame or judgment, allowing you to embrace all parts of yourself, even the ones you sometimes wish were’t there.

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Thinkstock photo by Eyecandy Images

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Why It’s Too Painful for Me to Take a Walk on the Beach

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It is difficult to explain to someone who doesn’t have reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) what it feels like. I’ve heard many explanations during my 16 years of battling it, and here’s the best one that I’ve heard: Imagine the blood being drained from your veins. The blood is replaced by lighter fluid and a match it lit. This, in a nutshell, is RSD/CRPS.

However, there’s one symptom of RSD/CRPS that’s difficult for people to understand when I try to explain it to them: allodynia: It’s a painful response to a non-painful stimuli. What does this mean? It means that even something seemingly as harmless a breeze hurts my body. My pant legs rubbing up against my legs is torture. A shower feels like knives stabbing me. The blankets I sleep with at night to keep me warm feels like sandpaper against my skin.

When I try to explain allodynia to people, they respond by just staring in disbelief. This response is understandable, because it sounds so ludicrous that a breeze could cause me to curl up in a ball and cry. However, it’s true. Something as simple as a walk on the beach, which is supposed to bring a sense of calm, makes me want to jump out of my skin. Because of this, I only stepped foot on the beach on my honeymoon to Aruba a handful of times, and instead chose to spend my days on the chairs by the pool. Things that others take for granted — taking a bubble bath, enjoying an outdoor wedding and spending the day at the ocean — are terribly painful for me.

I have tricks I use daily to help lessen the effects of some of these (what should be) non-painful activities. For instance, I wear knee-high socks every day. Even in the summertime. The static pressure of the socks is less painful than feeling my pant legs rub directly against my skin or a breeze when I’m walking or sitting outside. While a lot of people enjoy taking long showers, I take quick ones to keep the stabbing water droplets to a minimum. When my legs are really hyper-sensitive from the allodynia, I’ll make a little blanket tent in bed, so the blankets can still keep me warm but don’t touch my legs. 

It’s hard to fathom living a life where things that should be comforting are so incredibly painful. I know this because I wouldn’t have been able to understand it either before I was diagnosed. However, that is the reality for so many of us with RSD/CRPS.

Please don’t take the things that comfort you for granted. Any day, there could be a change in your health, and those comforting things are now your enemy. When I have a day where my pain is lower, I take off my socks for a few hours outside or take a shower that is just a minute longer than normal. I cherish those little victories, and I look forward to the day when I can take a walk on the beach with my husband again.

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Lead photo source: Thinkstock Images

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