Why…

Why are some people just…stupid, for lack of a better word. I mean seriously. You don’t call or see someone for more than, oh let’s be generous, 2 weeks out of the year. And suddenly, after more than 10 prior surgeries, this PARENT, and yes, I said parent, has their kids show up after they’ve had a stroke acting all concerned and like they want to take over. These kids weren’t concerned during anything else, and that included a pacemaker/defibrillator surgery. So, it makes you go hmmmmm. Oh well, I guess. Just makes you wonder what these people are thinking, if they’re thinking at all.

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Hi, I’m CRPS/RSD

A friend found this, and shared it with those of us who have chronic pain issues. To clarify again, this is what I have, and hopefully it helps you to understand.

“Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.

I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.

I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyway I please. And, I will. Constantly.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.

I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.

I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.

Some of my other inflammatory disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.

I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.

Shortness of breath or “air hunger?” Yep, probably me.

Bone density problems?

Can’t regulate body temp and poor circulation?

Constant ‘electric jolts’? Yep, probably me.

I told you the list was endless.

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.

I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.

They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.”

AUTHOR UNKNOWN

Pain and more pain

How many of you have a stool or chair in your kitchen that is there when you are in too much pain from standing while cooking or doing the dishes? I do. Usually I am up and down while doing both. The pain in both ankles feels like burning, with severe stabbing pain. Then, if I’m standing or walking up on my feet for too long, I can feel them swelling up, and that is a different kind of painful.

Then I have severe wrist pain. It’s difficult to pick up, hold, grab anything, or put any weight on them. The pain comes and goes. I put lidocaine patches on them and wrap them, to try and help ease the pain. Sometimes it helps a little, sometimes not at all.

I also have lower back pain along with bilateral hip pain. These intensify when I stand or walk too long. If the hip pain gets too bad from walking, my body has the tendency to not want my legs to work, and then I trip, trying to fall on my face. If not for my husband and daughter, I would have face-planted several times already. The lower back pain gets very intense and sends hot,shooting, stabbing pain down my behind down to my knees.

There’s also shoulder pain. It hurts to reach, and it only allows for reaching so far. Sometimes it just appears to hurt for no reason. Have you ever tried to get dressed and put on a bra and shirt while having sharp, stabbing pain? What about combing your hair? It’s not fun.

And finally, there is the excruciating neck pain caused by DDD (Degenerative Disc Disease) and Spinal Stenosis, cervical edition. This nasty pain makes it difficult to look up or down or even turning your neck from one side to the other. It also gives you a wonderful headache, that they think is stress induced.

So, by looking at me, you wouldn’t see all or any of this going on. I do wear an orthopedic brace on my right foot and ankle that comes up just below my knee, so you would wonder. I also use a cane when I walk to help take pressure off the right ankle and foot. But that’s all you will see. My point is don’t judge someone, don’t call them names like lazy, or talk about them behind their back. Until you have walked in their shoes, so to speak, please be quiet. You have no idea what is affecting someone , so until you know what it is, and how it affects them, do yourself and everyone a favor and shut the f up!!! End rant.

Books

Since I have the plague, I have been reading more. (I am normally a very prolific reader). One of my all-time favorite authors has some amazing series.

One is hilarious, and is called ‘ The Dysfunctional Chronicles’. I guarantee that it will make you laugh, most likely out loud, like I do every time I read them. Sadly, no spoilers here, as I think most everyone would enjoy them.

Another one is what I consider to be fiction, adult fiction. I’m not sure what else to call it, but it’s a very interesting series. If you like demons and mythical things, I think you would really enjoy this one. And I’ve given all the spoilers I’m going to on this one.

Now for my favorite series, ‘ The Dreams & Reality Series’, it ‘The D & R Series’. It’s a combination of suspense and horror, with some humor injected. I can’t give you any spoilers on this one, they would give away too much.

The author is Hadena James. The first two books in ‘The Dreams & Reality Series’ are free on Amazon for Kindle. They are ‘Tortured Dreams’ and ‘Elysium Dreams’. The first of the ‘ Dysfunctional Chronicles’ is free also. It is ‘The Dysfunctional Affair’.

So if you have the plague like I do, or just enjoy a good book, check these out. And don’t forget to leave a review!!

Colds, sinuses, allergies, and the plague

I have been feeling like crap. One day it was allergies, another it was sinus issues. Then came cold-like symptoms and migraines. Currently, they have all decided to combine to form the plague. Yes, I said plague. A friend of mine called her never-ending cold that, and with what I have going on, it also fits.

I can normally deal with any of these one on one, but together, I feel like dying. NyQuil, DayQuil, and promethazine are my best friends at the moment. Also, sumatriptan.

If I survive this, I will be very happy. If…

Chronic pain

Most people think they know what chronic pain is, and how it feels. They also assume that the majority of people who have it are addicted to opiates. Truthfully, they assume incorrectly. I would know, I suffer from chronic pain and so do several of my good friends.

Some physicians think that we should all just “suck it up and deal”. I was personally told that for years, and since no one would do anything, I had no choice but to do just that and put on a smile and act like nothing was wrong. But I could no longer do that a few years ago, and pitched a fit until they decided that I needed help. I have CRPS (Chronic Regional Pain Syndrome), it was previously known as RSD, which is Reflex Sympathetic Dystrophy. It is something that is not fun to have, and it’s spreading.

Originally, it was just in my right ankle and foot. Now, it has spread to my other ankle and foot, along with both wrists and possibly my hips. I have severe burning in those areas, along with swelling. There are also some nasty muscle spasms to go along with it. The main problem is continuous, severe pain that makes you want to cry constantly. Those of us who have it this bad need medication just to function.

I need it so I can do dishes and cook. Along with trips to the store that are agonizing. We don’t show this in public, we are wired not to. A friend needs it so she can write, as it is her livelihood. She is having trouble getting treatment so she can function.

None of us want to be “high or doped up”, we just want enough relief so that we can do some basic things. We know that the pain isn’t going to magically disappear, some is still going to be there, at least 50% of it. But that’s okay, we just want some relief because this is too painful to deal with alone.

Self esteem

Do you have it? Personally, I have zero. Literally. My husband thinks I should have some, but nope, not happening. I probably have the worst self esteem on the planet. I don’t wear makeup anymore, as I need my glasses to see what I’m doing and that just won’t work. Doing my hair is difficult due to a shoulder issue. I wear big shirts and leggings. The leggings mainly because I have an orthopedic brace that goes below my right knee and down into my shoe. This means that I can’t wear just any shoes. Put it all together and yep, you guessed it, total zero self esteem and self confidence. I’m debating whether or not to put up a profile picture. Maybe.