Category: Opinion

By Guest Blogger Shannon Leidig

Greetings everyone!  Happy Autumn! I so cannot believe we are almost to the end of October, which means the cold and snow of winter is just around the corner. I for one so am not NOT ready for that.  I truly hope everyone is doing well.  I have been meaning to write another blog for quite a while; however, this thing called LIFE just happened to get in the way – as this was not the blog I had planned to write.  That being said – there has been a situation that has happened that has totally rocked my world and that [is why] I feel I need to write this one titled: “Don’t Judge a Book by Its Cover”

I think we have all had these types of conversations with people:

Friend: How are you feeling?

Me: Oh I am fine, no worries.

Friend: Are you sure as you have missed work for a few days and I have been concerned – so what’s up with that?

Me: Oh, you know, just the usual severe RSD flare and the pain raging out of control.

Friend: Really, is that so?  You look fine.  Your legs look like they are back to normal so you could not have been down that long.  I mean you really look great, make up is on, hair styled, and you are dressed like always.

Me: Well, nice chatting with you. Catch me later.

I walk away shaking my head.  What did my friend/coworker expect me to look like?  Did she want me to come to work in my pajamas?  You know, it is such a struggle each and every day, each and every single minute the clock ticks.  Meanwhile, my legs are as FAT as can be; I struggle to get my jeans off.  My feet are so swollen and discolored, almost black. My shoes are killing me, yet I cannot sit at work with them off.   I pray for strength to get through it just to come home and battle it in silence.  We have all had conversations like this – and walk away wondering why.

I have had RSD for almost 27 years – diagnosed at the age of 19.  I remember that very day in April 1990 – my doctors told me I would not graduate from college, nor would I work and if I was thinking of getting married – think again.  HA! Last laugh on them, as I managed to do all of the above (even though I am divorced, which is [a story for] another blog) – and then some.  I recall telling my family and friends what I had and they looked at me as though I had four heads: “Really? What the heck is that?”  “We’ve never heard of it.” “Are you sure she really has it, or is it all in her head?”  OH MY GOSH.  Doctors even wondered whether or not I truly had RSD – as my case was not “typical.”  Is there really a typical case of RSD?  I remember telling people: “Please do not touch this limb” or “[Please do not] slam that door the vibration hurts.” [I was told to] suck it up.  The years would pass and I just finally pulled myself into my turtle shell. I felt so much safer on my own [versus] sharing. My family was doubting me, my friends were thinking I was a whackadoodle, yet I knew what was raging in my body.  It was this intense volcano blowing up in my body that I struggle with each and every moment – we all do.  Honestly, it took much more energy to deal with the people than it did with the pain. Then the endless doctor appointments and treatments literally suck the life out of you.

Fast forward to the year 1999 – the year prior to my marriage. At that time, my ex lived in Hawaii. Prior to leaving, I went to the doctors and asked them what I needed to do in order to decrease a severe increase in the pain. Their response was: “Nothing, just take your meds.”  Well, if anyone has ever flown to Hawaii, you know just how long that flight is.  While there, my ex and I hiked, saw the beautiful waterfalls, and everything [else] a “tourist” would do.  Flying home, I flew from Honolulu to Newark, NJ. That flight was horrific. I then flew from Newark to BWI-  coming off the plane it was butt stinking cold.  I noticed my legs looked much different and more swollen than normal. As Thursday turned into Friday, the swelling increased. My legs were much colder than normal and they were BLACK – that was the kicker.  The next day, I went to see my doctors and at that point it was either major nerve blocks along with a catheter or amputate my legs. WHAT THE HEY?!  The docs asked me if I did anything new or different and of course I told them.  I recall my nurse standing there (we later became friends and colleagues in the fight for pain awareness). She said: “Let me get this straight, you were hiking, doing this, that, and the other while you were in Hawaii in PAIN?  You walk into the office looking nice and tan and you say your pain is a 10?”  UM DUH. Y’all are talking about amputation. Am I supposed to look like I just crawled out of bed?  Do NOT judge me!  If I say I am in pain, I am in PAIN.  I hurt to the point I cannot stand it and yet you are questioning me?  How and why?  She later told me that I taught her a very good lesson through the years; never EVER judge a book by its cover – read the entire story!

One thing that whole experience told me is to say, yes I am, first and foremost, Shannon, who happens to have RSD/CRPS.  It is a beast and I am in severe pain 24/7, to the point it drives me to tears, but I suck it up so I can have a life.  Even to this day, family, friends, and coworkers who know I have RSD question if I really do hurt as bad as I say I do. Again, YES. Sometimes, I put that mask on really good while others [are unable to do so] but DO NOT JUDGE A BOOK BY ITS COVER! There are two sides to everyone’s story.  I am Shannon: daughter, sister, friend, employee, and coworker, and (oh by the way) a pain patient, too. I work full time, though there are days which I struggle even more than usual, but thankfully most of my coworkers know something is wrong when they can see how swollen and discolored my feet are. They can read it on my face, too.  Most of my friends can tell, though I will be honest, some do not want to hear it and that is fine. Those friends are not in my tight knit circle of support.  My family understands and they can read me like a book. My words get garbled though, as I do not want them to know how bad feel.

The next part of my chapter happens to be my doctors.  I am truly blessed to have the most amazing doctors – they are my supporters and biggest cheerleaders.  They so love to kick me in the butt when I am having a bad day.  Even when events were happening in their own lives, when their worlds were spiraling, they never looked any different. They still treated me, and all of their other patients, with respect and compassion.  I could tell something was bothering them; however, they said: “We got this, we are good.”  Okay…

Then several weeks ago, things hit the newspapers and made headlines, and honestly so many people rushed to judge and jump to conclusions.  I will admit I semi did, as I thought: “What happens if they close down? What do I do then?”  I cannot leave these guys, as they truly have been with me through thick and thin the past six years.  I started to think of their other patients, their employees, and other physicians, their families while sitting at work listening to whispers. “Oh, they are so bad. They need to be shut down.”  People were judging a book without opening it, delving into the many pages of the book.  Was that fair?  No, it was not.  Many other events have transpired to which my heart has been broken in two.  Once again, people are rushing to judge them and that is wrong.  It hurts me to hear this, as I know I have been judged so many times without people wanting to get to know me, know my condition, know what hurts/helps. Y’all know the drill. Dig into the book, learn by listening and watching. Sometimes, a cover of a book can be ugly, but the ending of the last chapter turns out to be beautiful.

As soon as I hear people rushing to judge the events of the past month, I am very quick to defend my doctors.  They have cheered me on when I was down and out, when I felt like I couldn’t fight any more. They would look at me and be like: “Really? You just want to say ‘done’ when you have done all this? Okay fine be a quitter.”  OH that gets me, let me breathe and turn the page. A new chapter begins.  Please do not judge, as we do not know what is happening in others’ lives.  Take time to read, watch their faces.  You can tell when someone hurts and is in severe pain. Listen when they talk, as that is a story in and of itself.  Please do not rush to judgment.

I, along with so many others, struggle to deal with the events that have occurred.  I just ask that when you see someone who is down and out, ask them what can I do to help.  Do they need anything?  Please do not pass judgment. “Oh they are sitting all alone, they just want to be by themselves,” well maybe they do, but is there harm in asking?  No. Do not close up the book without turning the page to the next chapter.  Sometimes, some of the ugliest chapters which we think will never, EVER end lead you to a beautiful start to something even bigger and better. Hang onto it and do not keep silent.  Share your story when someone asks if you’re okay.  Say: “Nope I am in a lot of pain.” If they ask, tell them what you have.  If we stay quiet, how else can we share our story and get the word out about RSD?  Do not judge as we have no idea what another person is reading. Out of the storms and chaos of thunder, lightning, hail, and downpours, the sun comes out and there is the most fantastic rainbow shining – and there begins our next chapter.

There is a song from Hamilton called, “It’s Quiet Uptown” for which I will paraphrase:

“There are moments that the words don’t reach
There is suffering too terrible to name
You hold your child as tight as you can
And push away the unimaginable
The moments when you’re in so deep
It feels easier to just swim down

The Hamilton’s move uptown
And learn to live with the unimaginable

There are moments that the words don’t reach
There is a grace too powerful to name
We push away what we can never understand
We push away the unimaginable

Forgiveness. Can you imagine?
Forgiveness. Can you imagine?
If you see him in the street, walking by her
Side, talking by her side, have pity
They are going through the unimaginable”

Again, sometimes a cover is so stinking ugly and many chapters are dark and disgusting, like when we are diagnosed with RSD, have a bad experience with treatment, or are trying to explain when someone does not understand what we have and what we experience.  Don’t rush through that chapter; finish it to its completion.  When there are storms in the story of our lives, wait for a moment, and turn the page. There will be the rainbow that is the most brilliant of any we have ever seen. We will all be thankful that we did not judge a book by its cover.

WHAT DOES REMISSION LOOK LIKE?

Written by Dr. Katinka van der Merwe for the RSDSA blog.

Through the years of working with CRPS patients, I have often encountered what I refer to as “the myth of remission.” What does this mean, and why do I refer to it as a “myth?”

When patients who suffer from CRPS dream of remission, they picture themselves back in the life that they used to have before CRPS. They picture themselves “cured,” and as having no pain ever. The truth is more complicated. You have to remember that CRPS is not like lightning that strikes unlucky, healthy people. CRPS affects those who, for whatever reason, have unhealthy nervous systems, and/or unlucky genetics. I call this “The perfect storm.” While it is possible to compensate for your genetics, this does mean that you will have to live more carefully than most. However, it does not mean that you have to wrap yourself in figurative bubble wrap, living in fear of every bump and fall. I have had many patients, after completing their treatment, suffer injuries or undergo surgeries, with no ill effects.

CRPS attacks weak spots in the nervous system if it is unable to self-limit the inflammatory cycle. A body that is functioning correctly can switch off inflammation when it is no longer needed. A healthy body can move out of a “fight or flight” response when it is no longer appropriate. During the “fight or flight” response, a chemical released by the adrenal glands called norepinephrine causes the body to temporarily “borrow” blood supply from, among other, the skin, the GI tract, and small nerves. When the perceived threat or stress has passed, healthy bodies can reverse this. However, the bodies of patients who suffer from CRPS have difficulty to reverse this process.

Difficult does not mean impossible, however. In my experience, the bodies of CRPS patients can be supported and guided to once again obtain balance between the two autonomic states called the parasympathetic (“rest and digest”) and sympathetic (“fight or flight”) states. In order to do this, the Central Nervous System must be supported to heal, as discussed in my earlier blog. However, this blog is not about my treatment, or any successful treatment, but rather, on what comes after. What can a patient expect after beating the monster that is CRPS?

The “myth of remission” generally consists of the belief that once “cured,” patients will have no pain, ever. This may cause some alarm in you when reading this. Does this mean that you shouldn’t expect the pain to disappear? That you can’t dream of a normal life? That is not at all what I mean. Rather than thinking in absolutes, or black and white, you must envision life after CRPS as consisting of more of a gray scale. I prefer to see CRPS as “managed” rather than cured. The patient must understand that, while their pain levels may be drastically decreased and even gone altogether, they still inhabit a body in which the perfect storm once came together to ultimately result in CRPS. You are the captain of this body, the steward. You make decisions going forward that will help to support a body that was once so stressed, that it allowed CRPS to develop. Not all patients will become a 100% pain-free. However, the pain should be much more manageable, without the use of daily narcotics. Remission essentially is a process by which you regain trust in your own body’s ability to heal from within. Ideally, it involves a basic understanding of why/how you got sick in the first place, so that you feel more in control of your future health, rather than a sitting duck.

There is a big difference between living diligently and living in fear. Living in fear means that anything can “get” you, at any time, like a predator stalking you in the bushes. You are constantly aware that it is always close by, ready to pounce. It means you are a victim with no control. Living diligently means that you are respectful of your health, as you have seen the damage that ill health can wreck on your life, your psyche, and your loved ones. It means that you make daily choices that are most likely to result in health. It means that you are in control. Special care must be taken during times of great stress, such as the death of a loved one, illnesses, or injuries. Think of your body as a building with a roof that has been repaired. During a monsoon, you need to be extra diligent, or your roof may leak and ultimately collapse. Do not ignore any “leaks” of energy.

I think it’s also necessary to talk about the actual process of healing.  In my experience, when patients fantasize about what healing will look like, it generally resembles a smooth road without many obstacles in which everyone lives happily ever after. In these fantasies of Nirvana, there are no drawbacks, healing happens fast (hence the word “cure”), and something brings about this healing from the outside in (a magical procedure, surgery, or drug). The reality is much different. For this reason, I thought it would be valuable to share the characteristics of healing that I have observed over time.

1. Healing is hard, hard work.

While healing can be extremely rewarding, exciting, and fun, it also involves incredibly hard work. Besides the initial work when researching treatments, as well as the practical problems you will have to sort out (financing, lodging, etc.), the actual process of healing can be very challenging. Essentially, you are signing up for a roller coaster ride of ups and downs, as well as rapid changes that all will require that you have to adapt. Your medications will have to be adjusted by a professional and you may go through withdrawals and detoxification reactions. In addition, you will have to learn what your new boundaries are. While you may soon feel like a butterfly emerging out of a cocoon, ready to spread your wings, your nervous system more resembles a newborn fawn, vulnerable and shaky at first as it acclimates. For this reason, I caution patients during the early stages to do only 25% of what they feel capable of doing. It also helps to enter the process of healing with the mindset that you are a willing, active participant, ready to bring whatever it takes to the table.

2. The body heals on a priority basis.

The body has a finite amount of energy available to it at all times. As the law of energy conservation states, energy cannot be created nor be destroyed, it can only be transferred. Why this is so important? Let’s pretend this energy is equivalent to a $100 bill. Each function and metabolic process in your body requires a predetermined amount of energy. For example, the simple act of walking may require $5. However, if you have an injury to your right foot, such as a twisted ankle, walking may now require $15 instead of $5. The additional $10 cannot be simply created, it has to be transferred from other areas. This may leave every other body part and function now lacking the energy to be performed optimally. The injured part is essentially ‘vampiring’ energy away from other parts of the body. The brain will not allow this “energy leak” to go on fruitlessly for too long. If an injury does not heal, after a while, the brain will start to ignore it.

Using the same reasoning, the nervous system will always focus most of its energy on the injury that threatens your survival the most. While CRPS may be your most painful injury, it may not be your most life threatening injury. If you have heart problems, for example, these problems may be silent but ultimately prove to be more deathly. Your body, in its infinite wisdom, knows where to focus its healing energy. Conversely, as the main sight affected by CRPS begins to heal, you may feel pain somewhere new as your body is cycling through old injuries as it now has the energy freed up which allows it to shift focus. This means that old injuries (such as disc problems) may suddenly hurt more.

In addition, my patients have frequently reported that as the limb/area affected by CRPS gets better, they will now feel the pain of CRPS elsewhere in the body for brief periods of time. This does not mean that the CRPS is spreading. It means that CRPS was already affecting other parts of your body, you were just not aware of it. Pain is used by the nervous system as a fire alarm of sort. It alerts the brain to areas that require healing. You cannot get better unless your nervous system is made aware of every malfunctioning area or body part.

 3. You will lose your “pain callous.”

Healing means ups and downs rather than smooth sailing. Some days you may feel incredibly good, and other days may plunge you back into the bowels of hell. People who suffer from daily chronic intense pain will develop what I refer to as a “pain callous.” This is a protective mechanism used by the brain that prevents a massive daily leak of energy as discussed above. You cannot survive for long if you are hemorrhaging precious energy. For this reason, your brain is forced to start ignoring pain to a large extent. The minute your brain unleashes your inner healing, your body will return to a state where it experiences pain the same way normal people do. For this reason, you will now experience pain differently. This means that when the pain does come back, even though it won’t be worse, you will perceive it as more intense.

Coupled with this phenomenon is the fact that no matter how many times I tell my patients that ups and downs are to be expected, and that the pain won’t disappear for good after one treatment (except for a very lucky few), a part of them will still be crushed by disappointment when they have a bad day. It is one thing to hurt every day and have an uneasy acceptance of this daily pain, but to get excited, and have a glimpse of heavenly normalcy and then to hurt again, is petrifying. The first thought that will pop in your mind is: “Oh no, is the pain back?! Was it too good to be true?” As time goes by and your pain goes down again, and your new low pain levels become more stable, you will learn to trust your body’s ability to rebound.

 4. Change is scary!

When you picture being healthy again, I bet you never expect that feeling better may be petrifying at times. That makes no sense, right? I have observed, however, that healing is, in fact, very scary. It took me a long time to understand this phenomenon. As humans, we are naturally scared of change. Change requires our nervous system to adapt to its new circumstances and it requires our lives to change as well. When you suffer from a chronic condition, you start to view yourself differently. Others start to view you differently, too. You getting better will require those around you to get used to a new you, too.

Your daily responsibilities at home change in some very practical ways. You may no longer help around the house, cook, or do your own laundry. Your relationships change also. In addition, if you have suffered from CRPS for a year or longer, you typically have been forced to change your circumstances in order to adapt. You may no longer be working. You may have given up on hobbies and traveling. You may have lost friendships and other relationships. You and your partner may have changed the way you relate to each other, as you became the dependent one, and your partner the caregiver. Healing may require practical changes in your relationships. If you share children with a partner, they may have gotten used to being a single parent essentially, and making all decisions on their own. They may also be used to being in charge of most of the decision making when it comes to other things, such as finances. While this may be a burden, it may also be hard to give back some of the power they have grown accustomed to. This does not make them controlling, simply human.

Getting better may leave you feeling a little bit like Rip Van Winkle, waking up to a changed world.  You may have to start all over, in a sense. If you have ever observed a butterfly breaking out of its cocoon, you will know that this change has to happen very slowly. Luckily, most people will adapt after a few months and embrace life with a gratitude that can only come from literally having been to hell and back. After you return to normal life, you will always appreciate it in ways normal people will never understand. This will be a gift that you get to keep, one of the few positive things that CRPS will bring to your life.

Dr. Katinka van der Merwe is a chiropractor who practices in Fayetteville, Arkansas. She treats the Central Nervous System, (specifically the Autonomic Nervous System) with the “Three Punch System”, recently revised to the “Four Punch System.” Her work is detailed on this site in an earlier blog. She has treated CRPS patients from all over the world in her clinic, and is the author of “Putting Out the Fire: New Hope for RSD/CRPS Patients,” expected to be released on Amazon in November. Her clinic number is 479-304-8202.

By Patricia Calderon, Guest Blogger for RSDSA

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

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

Benefits of an anti-inflammatory diet

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

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

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

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

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

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

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

Anti-Inflammatory Turmeric Juice

1 Medium Carrot

1 tbsp Ginger

1 juice from lemon or orange

1 tbsp Honey

2 tbsp Turmeric

2 cups Coconut Water

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

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

By Autumn Strand, Guest Blogger for RSDSA

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

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

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

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

Mine does not.

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

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