ABCs of RSD – T is for…

Temperature

T is for…

Thanks to Jaclyn for all her hard work helping with today’s list

Time
Time can unravel quick for us

Time, or rather the distortion thanks to the brain fog and all the other stresses and pain we go through every day that makes keeping track of time near impossible. And thank you Jaclyn for her suggestion that we never have enough…. recovery, time to do tasks, lots of examples and how we lose time

T is for…

Therapy, be it psychological or physical, we all need it sometimes! This can help offer us an outlet for the stress as well as help our bodies counteract the negative side effects from the advancement of the condition.

T is for…

Television
Television can be a great distraction

Television, throw on a movie to distract yourself if the pain gets bad. I highly recommend comedy’s or maybe a good drama to help you get some of the stress you have built up “cried out.”

T is for…

Triumph; something we can all do with time. But it can take a long while to get where we want to be. Don’t give up, just take your time and focus on where you want to be but don’t expect it happen over night.

T is for…

Tough…. we are tough cookies, but sometimes the dough we are made from is not always the best tasting.

T is for…

Tremors, one of the many symptoms that come along with the monster that can be very troubling for us.

T is for…

Temperature
Temperature can be deceiving

Temperature, we are sensitive to any changes in temperature, but at the same time can go through periods where we don’t’ feel any at all. So we need to be very careful not to burn/freeze our affected limbs; also diagnosis is dependent on difference of temperature between the opposing limbs.

T is for…

Talk, we still need to talk and be talked to, which is why the telephone (below) can be such a critical tool for dealing with RSD.

T is for…

Telephone
Telephone can be the lifeline you need when the time is most critical.

Telephone, our lifeline and our opportunity to talk with people who understand what we deal with.

T is for…

Tornado…. how we feel… like life was hit by a tornado and scattered

T is for…

Temptation – the desire to over do it and “live” in prior life. We can’t get back to who we were before, but we can definitely have a life after diagnosis.

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ABCs of RSD – S is for…

Sand

S is for…

From our Jaclyn:

Sand
Sand, don’t get your head stuck, or you just might drown in more than misery.

Sand… the sand some people chose to hide their head in instead of really learning about it. Don’t be afraid to research new options and opportunities for ways to approach this and your daily lives. Never know when you might fall on something that will work a lot better.

S is for…

Sleep deprivation, when Jaclyn gets silly, stupid (hey those are are s’s) and is giggling on the phone keeping me write my ABC’s at 11pm at night! But seriously, we all know that sleep deprivation is a common symptom and can make our moods horrible. Also the lack of sleep can make it easy to gain weight and difficult to feel like we can do our day to day functions.

S is for…

Shoes
Shoes aren’t just to get us from one place to another, but also offer us a great deal of insight.

Shoes, because despite how much pain we are in, we still need to stop and consider what it’s like to walk a mile in someone else’s shoes before we judge how they live their lives. They have a  reason  for how they do things, so don’t assume your path is the only one that works. We have to be flexible in life.

S is for…

Strength, because even though we have a limited amount of strength to get through the day, some how we keep pulling some more out of the bottom less pit of self being which we are. Don’t be afraid to say, “I’m done” though because you need to leave some of those spoons we were talking about for tomorrow’s daily activities too.

S is for…

SNOW
SNOW, in Texas!

Snow, the devil’s spawn. So pretty but so painful.

S is for…

Spoon, and no not the Tick’s calling card. Spoons are a term used by some to put a “quantity” to how much energy someone has through out their day to get stuff done. It might not make a lot of sense, but it works for those who use it so if you are confused, just go with it. You might find it works better than you think.

S is for…

Support, jock strap not included. (Back to that sleep deprivation topic) Because we all need support some times. Don’t be afraid to ask for it because those who love and care about you want to help any way they can. Even if they are far away.

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ABCs of RSD – R is for…

R is for…

(From Jaclyn our favorite rambunctious, rioter in the middle if the night.)

Restrictions
Restrictions is so important

Restrictions, necessary evils. We must help control ourselves and our health we have to restrict unhealthy behaviors and working on important things.

R is for…

Resourcefulness, never give up, you become resourceful in finding that if there is a will there is a way. We have strengths we don’t know we have.

R is for…

Religion
Religion can help you find peace with the pain

Religion, though not all are in need of religion, some find solace and comfort in finding faith in something beyond themselves.

R is for…

Relinquishing control, sometimes you need to. Let go and let things happen they way they are supposed to.

R is for…

Random interjection, because in conversations with us, nothing will come out in logical order. It will probably come out but won’t necessarily make sense to those who are unfamiliar with brain fog.

R is for…

Research
Research

Thanks Andre for:

Research,  because it’s important to research RSD to know and understand how it affects those who suffer from the disease

(And more from Jaclyn)

R is for…

Ready, as in: ready or not here I come!

R is for…

RSD, reflexive sympathetic dystrophy another name for this stupid monster!

RCDOM
RSD/CRPS Doesn’t Own me
RSDSA
RSDSAOrg
RSDHope
RSDHope

RSD Hope

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ABCs of RSD – Q is for…

Question about Medicine

Q is for…

Quack
Quack

Quack, also known as the doctor we wish we had never gone to see in the first place. We all end up seeing at least one quack in our lifetime. Let’s hope it was just one for you.

Q is for…

Quarentine
Quarentine

Quarantine, we quarantine ourselves for quiet time. Because getting away from family during get together is sometimes a necessary quarantine because the vibrations of people walking, the movement of air, and the fear of touch is terrifying with holiday events.

Q is for…

Question
Question

Question, because there are so many questions that still need to be answered. But so many answers that just don’t exist. Be patient with your friends and family as they ask how you’re doing, and be patient with your doctor as he doesn’t know always how to help. This is a learning curve for us all.

Q is for…

Qualification, when it comes to qualification many of our doctors know less than we do. There’s no one particular branch that has a better grasp on it than another. Be patient with your doctors as they look to you for guidance just as much as we turn to them for help.

 

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ABCs of RSD – P is for…

P is for…

Perception
Perception changes dependent on what you are looking for. Keep looking up!

Perspective, how we perceive the world and how our body perceives the world are two different things. We see, feel, taste, smell, touch but our body seems to think that which we have around us is 10 times, a hundred times, a thousand times more insane than it really is. Be patient with your body and knows your limits. If you don’t know them yet, take the time to find when it starts to be too much, not when it is, but when it starts. Because doing this can be a key point of learning to develop when you hit your limit for the day, the hour, the minute.

P is for…

Precious, every moment with or without pain can be precious. We have so many things to give in life: our time, our experience, our love. Don’t stop to think about the little things that are important in life that most people take for granted. Sure you might have been a hiker, or a dancer, or the government officials flying all over the world. But in your head you still have knowledge, your experience; in your heart you have so much love. Everyone around you: family, friends, or fellow RSDers, to them you are precious.

P is for…

Pace, because we must pace ourselves throughout the day. We only have so much energy and if we overdo it in the early morning we can’t get anything done in the afternoon, evening, and maybe even the day after. So take your time. Baby steps are okay, because as long as you get where you need to be, you are rocking it.

P is for…

People
People, can hurt and help, and sometimes at the same time. Be patient with others.

People, they can be our greatest support and our greatest failures. The people around us can help make us get through the day or can make the pain 10 times worse. Emotional stress is it G trigger to make the pain worse, so if you find that something is too much if someone is too much then you need to step away for a while. Well it may hurts and they may not understand ultimately you have to do what is best for you, but if you can try to explain it to him as you just need a little time.

P is for…

Plague, it might sound weird but when I saw the words like in my dictionary, I thought it belonged on here. Not that RSD that can be spread from one person to another. But because it can be its intimidating factor in how people tend to shy away from us because its “sounds contagious” so people step back. And also, ironically one of the plagues, (the bubonic) had vitamin C as a key factor in fighting it off so the correlation just kind of stuck in my head.

P is for…

Progress
Any step in the right direction, even if its after two to three steps backwards is always progress.

Progress, every treatment there’s potential of progress, potential of a period of time where the pain is diminished or SAT farther back in its process. Yes that means you have to go to the hills of the last few weeks to months to years that you just did all over again, but progress means it also has to go back through all that again before it gets any worse. Don’t give up because it didn’t take it all away everything counts.

P is for…

Pride, pride is a very dangerous thing. It can lead us to do things that would hurt us just because we don’t want to depend on someone else. But if that person wants to help you, wants to be there in your life for the rough times, let them have the chance. Don’t let pride drive a wall between you and someone who loves you.

P is for…

Paint, when I saw this I thought of the “Color of the World Orange” event and a video of the young lady wanted to do to for a song that she wrote about RSD. Check it out, I think she did a great job.
[youtube=https://www.youtube.com/watch?v=YVoQczI0gxY]

P is for…

Paradise, the world free of RSD/Casualgia/CRPS, that’s paradise for me. How about you?

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ABCs of RSD – O is for…

Orange

O is for…

Orange
Orange, the primary color of the RSD ribbon

Orange, because orange is AWESOME! And because its the primary color for the RSD/CRPS community. (With red flaming tips on the ribbon which often is left out but it so truly difficult to find a good ribbon like that.) if you have orange, please wear it this month as often as you can.

O is for…

Opinion, man, does every healthy  have one. Some great, some less than helpful. But ultimately they are just trying. They are just hoping they can help in some small way to make life more bearable. Because no one likes to see great people hurt. And lets face it, most of us, have the patience of Saints to make it through this day to day.

O is for…

Obligation
Obligation to try and help ourselves and our family the best we can.

Obligation, to ourselves, our health, our family, our friends, and most importantly our future. Because even if it sucks now, tomorrow is a chance for change. A chance for hope. A chance for a new restart after a successful therapy. And maybe one day in our/your life time a chance for answers and to get somewhat better.

O is for…

Omission, we are all experts at this. We hold back so much; limit what we tell people out of concern of the cost.  But yet we sometimes just need to let go. So find a RSD support group. In person, online, doesn’t matter where. But go where there are others who know what you are experiencing and let it all pour out. Because it helps to just let it out.

O is for…

Observe
Observe how your body acts and what might be influencing it.

Observe, because we must constantly observe our bodies and how it acts for potential signs of it spreading or new symptoms. Don’t get discourage. This just means we have a chance to know ourselves better than our friends and family.

O is for…

Opportunity, not always available, sometimes can be hard to decide if it is worth a try or not. Every opportunity, be it for healthier options, for financial situations or really anything should always be weighed carefully. Because there is potential for bad recourse from some opportunities that might seem grand in the beginning, but end up making our lives even worse in the end.

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ABCs of RSD – N is for…

N is for…

Narcotics
Narcotics stink!

Narcotic, yes even though many of us don’t ever want to touch the stupid drugs, they’re almost a necessity just to be able to make it through the day. Just remember if you’re on medication, you need to protect your stomach for any adverse side effects. They can be pretty corrosive and cause even more problems in the long run.

N is for…

Never, say never. One day, this will all makes sense. But in the meantime, we will stand tall, be it with a cane or wheelchair, we will stand tall through all of this.

N is for…

Nerve
Nerves can we for us or against us. Here’s to looking to having teamwork again some day!

Nerve, these are just the beginning of our problems, but at least we have a lot of nerve to keep fighting back. Don’t give up and if/when you have those temptations to end the fight, the best thing you can do is reach out to your pain family. Be it online, over the phone, in person because RSDers are going to glad be there for you so you’re still here tomorrow.

N is for…

Non-stop, a concept that is truly hard for a healthy person to understand. Because the only thing that they truly never stop doing is blink and breathe. So the next time someone tries to understand how often you’re in pain, you could compare it to how often they blink or breathe.

N is for…

Nuclear

Nuclear
Nuclear because we just feel like we’re radioactive when we hurt.

, because this is what our bodies feel like when we’re having a flare. We have a nuclear bomb going off inside but it doesn’t always have a particular location it does so at. Sometimes it just wants to be everywhere.

N is for…

Naughty, just really our body is just being really naughty and not listening to the fact it’s healed.

N is for…

Nutrition, is insanely vital for not only attempting to not make us sicker(diabetes and cholesterol), but to help or immune system fight off the day to day crud we are exposed to.

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ABCs of RSD – M is for…

M is for…

Melancholy
Melancholy, because its OK to be down. But you don’t have do it alone.

Melancholy, for many this is a semi permanent state inside. Regardless of the smiles we carry. Just remember, it’s ok to be honest with others who have the condition. When healthies and family are worried about you give them solace by venting with your favorite RSDer. Because they just want to help, and many know they can’t but at least by opening up to others who know and understand, you can be assured when you feel like stopping the pain by force, that those who say we UNDERSTAND and that we don’t want you to leave us. It truly is coming from someone who can feel your cries and knows how bad it can hurt inside.

M is for…

Medicine, is the bane our our existence. We are constantly offered medicine by those who know us. Rejected it when we run out and the pain flares into a raging fire off hours by those who don’t. And stuck with the side effects wrecking havoc on our bodies. It truly is the double edged sword we swallow every day.

M is for…

Major/Minor
Major/Minor is a great comparison word. Is it greatly impacting your life or only subtly at the moment.

Major/Minor, the severity of the pain. It’s not a “it’s gone” kind of thing, it’s a “it’s just not directly impacting my ability to function at this moment” kind of thing. It’s hard to put labels to it, but I find this pair work fairly sufficient.

M is for…

Mattress, oh how our mattress can be our best friend or our worst enemy. Sometimes we feel trapped in bed, the pain is so excruciating we can’t bear to set-up. With that in mind, remember a comfy matters for your back and sheets that don’t aggravate your skin, such as satin or silk or some sort of synthetic, are so very helpful on days like these.

M is for…

Modification, as we’re sometimes but in difficult situations that make our pain flair up more than usual. Modification of our perception of the situation can help decrease it or at least not help make it worse.

M is for…

Myself
Myself, because I KNOW I will always be there when a flare hits. So I can turn to myself to help get me through it always.

Myself, because I am my biggest supporter. I am the only one who was always with me. I can be my strongest advocate, or my worst enemy, and they sure as heck would rather be the first and second.

M is for…

Motivate, because it is a key feature in our life. Without motivation many of us would give up. We would let the pain consume us. So find something to motivate you, something that matters. As you seen before and mention volunteering. I encourage people to form friendships (online or locally) with others who have this. But also find grounding in your day to day lives as well. Because having people physically there when it’s rough can make it completely different.

M is for…

Monster
Because Grover worked so hard at RSDSA, we thought he’d be a great representative of the better monsters in our lives.

Monster, because Grover was sad I didn’t include him for G! But I think he’s so much better as the representative of the better monsters we’d like to have in our lives.

 

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ABCs of RSD – L is for…

L is for…

image

Love, somethings are more important than physical toys and things we need, want, and none of them were nearly as important as the love and care we receive from our family, friends, and caregivers.

L is for…

image

Laugh, because it’s so very helpful to combat pain. It helps with the chemicals in our brain to combat depression, our perception of the severity of pain, and come on, it’s FUN to laugh. So grab a comedy and let them rip!

L is for…

Living, because even if it’s not the life we wanted to live growing up, the life we worked for in college, it’s still a life we’re living by circumstances. And through living, we open opportunities we make a difference in others lives. And as such that is what makes us different. We can educate, we can offer support, we can lead those who need our help going forward in life to make their differences to. So be honest but keep our short do they don’t get confused.

And from our favorite Jaclyn

L is for… love

L is for… Laughter

L is for… Labs and the blood they take and the hair we lose waiting on results

L is for… Live life to the fullest

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ABCs of RSD – K is for…

Kisses can hurt

K is for…

Be kind
Be kind, it might be just what you both need

Kind, because a single kind word can help another have a better day. Studies have shown it’s much easier to spread negativity than it is positivity. So remember when you think someone might be having a rough day, be kind to them. It might be all they needed to turn their day around.

K is for…

Kickstarter, an opportunity site that those with a business idea/product but not the funding can propose ideas to the world to get financial backing. Just because we physically can’t do work, doesn’t mean your minds can’t.

K is for…

Karma, balance of the universe
Karma, balance of the universe

Karma, a foreign word that has over the years taken root in the English vocabulary, but it’s a very old concept. Similar to the golden rule, it suggests what we do now impacts our lives in the future and our past affects us now. Positive bringing positive, negative bringing negative. It’s amazing what life can be like if you’re surrounded by positive people, even in your darkest hours.

K is for…

Kudos, a very unique word that I think deserves a place here. Because if we give support and kudos to those who make a difference in our lives, hopefully they will feel it’s worth while to keep doing all that work.

K is for…

Kisses can hurt
Kisses can hurt, but air kisses are definitely awesome!

Kiss, affection can be brutal physically, but a kiss, a hug, can make the world of difference in our day. Just remember healthies, air kisses/hugs are highly encouraged!

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