The Dalai Lama

Spirituality concerns our own motivation, while secular activity implies working in the world. Because motivation pervades all action, it is important that we have a positive motivation. Whatever we are involved in, whether it's politics, education, medicine, law, engineering, science, business or industry, the naturef our motivation determines the character of our work. --Dalai Lama
My comments:
So many are freaked out over the word spiritual. They link it with "organized religion" and claim it was "rammed down their throat from birth! I want nothing to do with it!!!" That is religion which is gathering in an organized fashion to practice a set of beliefs that may be believed in by that organized group. I quote the Dalai Lama because it is spiritual. I don't share the same religion as he, but I find much attraction in what he has to say because I find it spiritual: it nourishes my soul...it may not yours. You find what works for you. What feeds you, but do not fear spirituality!

You've got nothing to fear in spirituality~tending to one's soul is a good thing. Nourishing it, feeding it, and giving it oxygen by clearing out all the unnecessary "applications" running around in the background--clean out those mental "applications" think clearly, feed your soul...and then more "mental RAM---Random Access Memory, if you will--to borrow from a friend: what is to fear of that??? You think more clearly, you are able to be accountable for yourself (is that what is feared?), and fulfill your life in ways you may have never dreamed possible!!!

That is not to fear: that is to seek...to look and search for a "greater knowledge within."

I am becoming disabled a bit by pain: my body--not my mind!!! NOT my spirit--YOU CAN'T HAVE THAT!!!
The more adept we become at cultivating an altruistic attitude, the happier we will feel and the more comfortable will be the atmosphere around us. But if our emotions fluctuate wildly and we easily give in to hatred and jealousy, even our friends will avoid us. So even for people with no spiritual beliefs, it is important to have a peaceful mind. --Dalai Lama
Alturismis defined: Unselfish concern for the welfare of others; selflessness

Mycomments:
There is a satisfaction in helping others. It gives you a feeling within that cannot be topped, and sets you at peace and satisfaction with the world around us--you feel "on top of the world." It gives you a sense of peace.

If we cannot control our own emotions and let them run us, it almost always turns negative: haanger,tred, and resentments control us. We then let ourselves become someone we wouldn't even like. And end up not liking. Attitude creeps into it, and then we lash out at those who are trying to help; show us love. Show us kindness and aulturism, and slap away the hand, that is trying to help us...reaching out, however gnarled and twisted and ugly in appearance, it's what's in the heart behind it. Bfind a way to nourish your spirit, I think, even if it's as informal as it gets. Go camping and be in soliecome like that--your friends won't just avoid you: you won't have any!!!

Solitude with nature; meditate a non-spiritual tape—whatever it takes, to just brinng your body and mind--all connected; some peace.

Or you end up alone.

I do what I can to feed, nourish and give oxygen to my soul. 

My friends are most important to me!!!

Choose your friends wisely!

PAIN DRAWING: Let's be real--children, speak English, and not STUPID???

Who is sick of forms like this at the doctor?

It's from Mosby books.

Whaley & Wong's Pediatric Nursing Text book.

Over 18?

Speak English?  Understand English?

Have IQ >85

Try this one instead:  you're not brain dead?

PDF can be found at


www.aapmr.org/patients/conditions/pain/Documents/paindrawing.pdf

A Day in the Life...of Someone with CRPS/RSD

It doesn't matter what you call it, a day in the life looks much like this 

(assuming it's a good day)

Okay, I don't get Physical Therapy--I'm not even close to ready, so keep this in mind.....

I used to rise at 5am to go to work.  Now, my alarm sounds at 5 so the pills that must be taken on an empty stomach can be so I can attempt to choke down something with the pills that must be taken with food--like the Vitamin D-2.  Oh, and the Vitamin D-2.  I set the record for the lowest level ever drawn in the clinic (amongst my other malnutritional problems).

My D-2 was immesureable...my D-3 was barely 7.  Total was 7...I shall soon know what my blood level was 7!

I have met one person who had a level of 6; she has an eating disorder: anorexia.

Gastroparesis here, folks.  That's the constant nausea and vomiting where you're fortunate if part 2 isn't NUMBER 2.....

Meaning, part 2 being something like this:

Not this:

#2

Well, shit, I'm sorry, but--for one, at least the dog puked in the toilet....second, at least the individual responsible for picture #2 of Number two, had the good sense to take the damned picture...how many times have you been asked the details of your last bowel movement?

Well, I get asked what my puke looks like..."Breakfast" is usually the response.  Or whatever meal I was stupid enough to eat...so there's really no shit (excuse my language on my blog,) in my gut to produce like this person has...there's nastier photos, and be grateful I am well enough to use a little humour tonight...

And that happens less often.  When you carry what you need around in a bag formerly used for a bowling ball, and some of it is pills, ok...most of it; then the siesta mask for the sudden migraines, countless earplugs, a couple jugs of your protein shake--some fennel so you can have a good shit and count them by the week not the month.

If your lucky you sleep.

If your not you sweat, scream, cry, vomit, take your body weight in pills:



This is what my hips look like--the right one is the one they drilled that I got RSD from.  The surgeon said ITBS (IT Band Syndrome)...but we've preeeettttttyyyy much ruled that out.  At least I am not this poor bastard:

Of all the things that suck about RSD/CRPS, is that even a needlestick by someone who is a bloody moron, you are basically fucked (sorry--my blog, my language, no one is forcing you to read), but talk about getting enough fluids, I should take a photograph of my meds, which mostly come in liquid....

This isn't my slush, but pretty fucking close: don't forget about the pile that I have to chew and crush...some perfectly helpful meds, I have had to stop taking because I couldn't tolerate the taste.  And because I have to make a slurry of it.......I chew/crush pills more

As my body gives out on me, as the betrayal continues...my right leg constantly feels something like this:

But none of these, or all of these combined accomplishes what I would like to find for RSD:                    |

|

                         \    |     /

                          \   |    /

                            \ |  /

                              \/      

         

 

One                          plus               TWO

equals

What feels like a million....

And it's fucking all you want!!!!!!

Putting out fire with pills-medications, spinal blocks, etc.....it's crap.

This mug reads:

"My own experience with a chronic painful medical condition exceeds your percieved medical knowledge"

       

No more "RSD099" please!!!

The first two hours of my day have been hard enough!!!

An Unwelcome Visitor

You are my unwelcome visitor,
Like a party guest who won't leave
Only you are so much worse
You come in and in one stroke,
Cause so much suffering, so much agony,
So much heartache, so much damage...
Living with you every day is a living hell.

No one wants you around,
The life I do have you are najubgy miserable.
A torturous, living, nightmarish living hell.

You stalk your victim like a wolf stalks its prey.
But at least the prey knows where to hide.
You are with me every minute
Of every hour
Of every day.
Now diagnosed with RSD,
I know you're not going away...

Going to hell is where you belong,
I want you to leave me alone dammit!
I deserve a LIFE!!!
You feed on people,
their negative feelings,
and that is how you survive,
how you grow and how you thrive!

You are worse than a parasite,
but smaller than a tick.
No one can see you,
Until you have deccimated their lives......
You are the perpetual thief,
You take everything away from someone,
Life, freedom, and a sense of peace...
You have solen my selse of well-being,
My ability to even so much
as get a peaceful slumber
It feels like I am forever your prisoner
Your servant and your slave.

I used to love and enjoy my life.
I was happy, satisfied, productive, and free.
You have stolen it all from me.

And with "malice and forethoughought"
as the CJS says
Like the murderer you are!
Oh, don't you remember Eric?
The tears his mother still weeps?
The memories of him we all have.
Eric before the pain and RSD.
Eric after the pain and RSD.
A different man. And different FATHER.
You crush a person's sense of hope
You steal their spirit. Their zest for life.
Their desire to live, and hope that something will help..
Eric drove away his wife; she divorced him;
begged him to come and see his girls
He refused, didn't want them to "see him that way."
He drove away his friends,
leaving him with only one,
who's help he also refused.

I could let myself fall into your deadly grasp.
Think that if I had to stay in that life
for the next 20 year, 40 years,
However long I might have, that,
Well, I might well put a bullet in my brain now
Because what you have stolen is hope.

But you can't have mine.
If I have to close my eyes and talk out loud to Him
I will, I will not, however, let you steal the ONE thing
that has gotten me through the medical HELL I have
been through...the MRSA, the sepsis from it,
The bowel resection from gangrenous bowel,
the poison that floated through my blood both times.
Both times I lay in the ICU, my temperature higher
than I care to think about.
and the damage it did too my body.

But I survived BOTH TIMES.

And although it's been longer than I've showered
than I care to think about, I won't let this
defeat me, I won't let let this beat me.
Though it feels like my
skin is being burned off
as soon as water of
ANY temperature (cold, tepid, or hot),
I will grit my teeth and get through it.

Because I do not allow in
an Unwelcome visitor.

Go away, get out,
you are not welcome here.

I have two huge Rottweilers
that can make it to the fence
in under 4 seconds......
the last dummy who tried to beat them
got 55 stitches.

How fast can YOU run???

Chronic Pain Syndrome: Can't explain/fix it, so we blame the patient...hmmmmmmm

I don't know if I fell on my own sword, as they say, but I had to look this up....it just reeked.. I was going through insurance claims, and saw this "Chronic Pain Syndrome diagnosis coming (but only really from the Physical Medicine & Rehabilitation Clinic; no on else was submitting this diagnosis--THAT is what got my attention;) and the fact I'd realized what bastards they were and fired their asses so anything that puffed out of their butthole was suspect-in retrospect, initially it had seemed like a good way to sum up the "plethora" of problems....but sum it up NOT get to the bottom of it!!!!!!

I was doing just was they were: throwing PT and meds at it (which I'd been doing for AGES before I showed up. And I still do PT and some beginner yoga exercises off a DVD I have, and this is DAILY) but I can't use the pool anymore at my friends' apartment because she moved. But water feels like acid on my skin, at this point, so I think right now, I will turn down the masochism.......

But here's the Chronic Pain Syndrome

and just when we thought we had some legitimacy, and dropped the stupid crap like Munchausen and all that other bullshit like oh.....ho hum........like how about what's that word when you're trying to get out of work and obligations???? Yeah, love it!!!

Background

Chronic pain syndrome (CPS) is a common problem that presents a major challenge to healthcare providers because of its complex natural history, unclear etiology, and poor response to therapy. CPS is a poorly defined condition. Most authors consider ongoing pain lasting longer than 6 months as diagnostic, and others have used 3 months as the minimum criterion. In chronic pain, the duration parameter is used arbitrarily. Some authors suggest that any pain that persists longer than the reasonable expected healing time for the involved tissues should be considered chronic pain.  No one ever hear of RSD???

CPS is a constellation of syndromes that usually do not respond to the medical model of care. This condition is managed best with a multidisciplinary approach, requiring good integration and knowledge of multiple organ systems (since RSD affects all of them!)

Recent studies

Mork et al investigated whether physical exercise and high body mass index (BMI) influence an individual's risk of developing fibromyalgia. The study included 15,990 women, none of whom at baseline had fibromyalgia or any other physical impairment. By 11-year follow-up, incident fibromyalgia had reportedly occurred in 380 women. The authors noted that only a weak association typically existed between exercise level and fibromyalgia risk; they determined, however, that women who were overweight or obese had a 60-70% greater risk of fibromyalgia than did women of normal weight, with BMI found to be an independent risk factor for the condition.

In overweight or obese women in the study who exercised for at least an hour each week, the relative risk (RR) for fibromyalgia (in comparison with women of normal weight and a similar activity level) was 1.72, while in overweight or obese women who did not exercise or who did so for less than an hour per week, the RR was 2.09.^[1]

In a study by Alonso-Blanco, a connection was found in women between the number of active myofascial trigger points (MTrPs) and the intensity of the spontaneous pain and widespread mechanical hypersensitivity; nociceptive inputs from these MTrPs may be linked to central sensitization.^[2]

Pathophysiology

The pathophysiology of chronic pain syndrome (CPS) is multifactorial and complex and still is poorly understood. Some authors have suggested that CPS might be a learned behavioral syndrome that begins with a noxious stimulus that causes pain. This pain behavior then is rewarded externally or internally. Thus, this pain behavior is reinforced, and then it occurs without any noxious stimulus. Internal reinforcers are relief from personal factors associated with many emotions (eg, guilt, fear of work, sex, responsibilities). External reinforcers include such factors as attention from family members and friends, socialization with the physician, medications, compensation, and time off from work. f multiple organ systems.  (Let's just bury your bullshit in some terms--> HEAD CASE/DRUG ADDICT, that is what your conclusion(s) are?  And reading on....)

Patients with several psychological syndromes (eg, major depression, somatization disorder, hypochondriasis, conversion disorder) are prone to developing CPS.

http://emedicine.medscape.com/article/310834-overview#a0101 (Background)http://emedicine.medscape.com/article/310834-overview#a0104 (Pathophysiology)


Chronic pain syndrome refers to persistent pain that usually has no identifiable source and is associated with abnormal illness behaviors, including expressions of pain (moaning, groaning, gasping, or grimacing) that are grossly disproportional to any underlying cause, substance abuse involving prescription drugs, non-prescription drugs and alcohol; self-imposed prolonged excessive disuse; self-limitation of social and recreational activities; and a self-perception of total occupational disability.

Chronic pain syndrome is complex and involves multiple factors, but should be considered if a person does not respond to appropriate medical care within a reasonable time frame or if the person's pain behavior greatly exceeds the usual response to a specific disorder.

Risk: Chronic pain is reported more frequently in women than men. There is no racial predilection for chronic pain. Risk for chronic pain syndrome is increased in individuals with psychological problems such as major depression, somatization disorder, or hypochondriasis.
http://www.mdguidelines.com/pain-chronic/definition

What is chronic pain syndrome?

Chronic pain syndrome (CPS) is a term used to define patients with severe persistent pain from virtually any source which has resulted in marked changes in behavior, self-imposed restriction of daily activities, and heavy, largely ineffective use of the healthcare system. CPS overwhelms all other medical symptoms to the point of becoming the problem itself. It is often accompanied by bouts of irritability, uncontrolled anger, and depression.

What are the causes of CPS?

CPS has no specific cause but rather is the cumulative result of a combination of conditions including the one(s) causing pain. CPS is not fictitious or psychogenic pain but rather the body's psychophysiologic response to chronic pain.

Is chronic pain syndrome preventable?

Symptoms of CPS must be recognized early and the disorder treated using a multi-disciplinary approach. There is some optimism that those at high risk of developing CPS will be identified in the future prior to injury, and treated more agressively during the acute phase.

http://www.painmd.com/types-of-pain/general-pain/chronic-pain-syndrome.html

IMHO:

 

A little hypocrisy...it's out there

I have had almost nothing but nightmarish experiences with these online "support pages," and I almost landed myself in the hospital with the last one....fucking insane that I was going to give up some a new Lazy-Boy recliner men's size that I can sleep in on occassion (not all the time), for a cheap laptop computer so I couldute post on one of those sites.

P4P is only one example.....there are scads of them out there--DS, Inspire, you

name it, it's probably got a title out there...

And several "BFF" self-appointed drama queens/kings of the site....the Borderline

Personality Disordered and Histrionic Personality Disordered type (minor in psych
nursing) seems to be the ones running rampant on each site......and each week
it's like they publish a list of people you are/are not allowed to be "friends" with.

War after war....and it churns my stomach.....

My doctorordered me off, and I ignored him...under threat of hospitalization and my friend confiscating my computer....I gave in and went "404" (aka, gave into the drama).  

Then the ones who don't follow the rules that should be there:

...they promote products; like some things a friend recieved in an email:

"NOPALEA produced by Trivita. Nopalea is Cactus juice that has amazing anti-inflammatory properties, anti oxidents, and powerful molecular restorative

properties..."

I get the RSDSA newsletter this is claimed to be in, and no mention.....

Drama and histrionism runs rampant on all of them. God help you should you

cross one.

Question one. And they have medical histories that would make Jesus

Christ Himself cringe....but they do it "with such 'courage, grace, and dignity'...and intolerance, hatred, and impatience towards others."

Kinda backwards, don'tcha think????

I do.

I dumped my membership to the latest one.

I have sworn them off.

I will write here. I am the Queen, but I always allow, and welcome comments

from readers....My blog is my support network; those who respond will be my
supporters; I have others who aren't posting here, but are still supporters.

And to you, I tip my hat.

Your own trials and suffering, you are supporters.

God Bless each of you....

Epidural Spinal Block--So Why Was I Turned Away Last Time? BEFORE I Even Had RSD?

My neurologist's last great thoughts on this matter were to do an epidural spinal block.  Needless (hahahaha) to say, I have some concerns:

• Last time I was referred for an ESB for my sciatic pain, I was eventually turned away.  Why, you ask?
• Severe, anaphylactic reaction to iodine, which they do say they need to use to guide the needle, as nonionic contrast is not dark enough for them to see where they're going.
• Risk of, as has happened, the steroid, getting into my CSF (cerebrospinal fluid), and then causing a severe, and acute manic episode with probable psychosis (resulted in 4 days in seclusion, 2 days in restraints to protect me from myself
• It did not work--not even slightly after multiple tries...I begged them to keep trying when they said, "Hey, it's not going to work if it hasn't by now," and I was so desperate for relief, I was willing to keep trying, even when it was clear it wasn't going to work!!!
• If it's done by an interventionalist who is totally clueless as to how to use care with RSD patient, and they do it even slightly wrong, you can wake up from Stage 2, with fair pain control......you could wake up with raging, rampant, running Stage IV RSD:

This is the mechanism of RSD

There is an injury to the hand, foot, arm, leg, etc; even hip surgeries can cause RSD....  The Sympathetic chain of nerves is triggered to send a signal to the brain.

The Original injury initiates a pain impulse carried by the sensory nerves to the CNS.  Instead of the pain calming down, the sympathetic nervous system "gears up for battle," and triggers the inflammatory response...this doesn't mean that ibuprofen will cure but it will help!  Anything that helps with the inflammatory process: Omega 3, 6, and 9 Fish Oil are powerful NSAIDS! 

The resulting symptoms we all know so well:  a burning, firey, nauseating pain that can even result in muscle spasms from their severity, and the muscle spasm causes vascular spasm, leading to increased swelling, sweating, cramping, and pain....left un-checked, it results in more swelling, sweating, cramping, and pain....

It's a vicious cycle!!!!

Oh, am I giving someone RSD099???  So sorry!!!!!!  I honestly meant to just keep it to myself~~not spread the wealth....Gee, I had no idea!!!!

But picture that from head to toe, day in and day out...  That can happen from one incorrectly placed needle, improperly done procedure by a doctor inexperienced with RSD!!!  Those are few and far between in the area.  So it's not so simple as "Gee, I'll try the nerve block (again, even though they didn't do shit for my sciatica!!!)..."

Life suddenly gets much more complicated, doesn't it???

While I watch my education and career circle the drain.....Well, I kinda knew that was toast~but maybe not forever, I am not going to give up!!!!!!   I just wish I had a better timeline; just seems far  away right now....

 

How to be Helpful to Someone with RSD, Chronic Pain/Illness

How to be Helpful to Someone with RSD, Chronic Pain/Illness:

• Say, “I'm going to the store tomorrow. Is there anything I can pick up for you?"
• Listen without advising or judging. Listen until it hurts...then listen some more.
• Offer to take him to the doctor or dentist and do something fun afterwards--Beat them inside and pay the copay for them (usually only $15-30, but on disability this adds up!!!)
• If they have furry friends, stop by with a bag of whatever brand your friend feeds their cat/dog. Or cat litter, or a new "pooper scooper" that might be easier for them to manage....
• Offer to take care of her kids for the day.
• Show up with cleaning products. Bring her a favorite beverage and a new magazine and tell her not to be embarassed...”That you've seen it all before”
• Bring her flowers or a healthy dish. Or both.
• Give him a gift subscription to an encouraging magazine.
• Send a gift card to his/her favorite online reading, hobby site--many RSD-ers are on disability or some form, if they have a “Kindle,” for example a gift card for one or two Kindle books; or one or two audible.com books (www.audible.com is a Amazon company)
• Give her a gift certificate for a massage, a pedicure or the movies. Something that when you are “living broke” you aren't going to have for “an occassional extra”
  
• Buy him an encouraging book and include a bookmark with a note from you.
  
• Buy matching mugs and agree that whenever either of you uses or washes them, you will pray for the other person.
  
• If you are a neighbor, ask if they would like you to bring their mail (they may be working on increasing activity) or if they want someone to walk to the box with and back, and then help them get settled and comfortable...
  
• Have a “girly day,” visiting a craft show, having tea/Starbucks, getting your hair done, or seeing a “chick flick.”
  
• Help and encourage home PT programs—offer a ride to the YMCA, maybe while your kids are in lessons
  
• Ask what, if any, chores they want or need help with (this part can be hard to admit for your friend—be patient. Let them know to think about it, write down your email (clearly), and let them know when they are ready they can ask.
  
• As much as your heart may be in the right place, do not email articles on “RSD that you just happened across”. Chances are-to them, it's RSD099, and it's frustrating, and can feel somewhat condescending. Remember: They live with RSD every minute of every hour of every day, and it's little more than a waste of time, and kind of hurtful.
  
• Trust that your friend is working with at the very least, a neurologist, who has treated RSD before.
• Trust is the basis of every friendship, every good and working relationship. Trust that your friend will not jump into the deep end of the pool blindfolded on the first day. Also remember that insurance companies, not doctors basically run the show, so know that it's usually some pencil pusher with a pocket protector, a computer, no working knowledge of RSD, etc, though that is going to dictate what treatments your friend has to, for the sake of cost, even with the best insurance, try the less expensive methods first.
  
• But know she has done her homework, thought about it, prayed about it, and probably talked to some of her spiritual guidance leaders, and a few other friends she trusts first. If you wonder why you're not amongst them, ask yourself about your actions during that time in her life:
  
  • Did she feel judged?
  • Did you send continual articles on RSD to her during the early times of her diagnosis?
  • Did you tell her to “pray more?”
  • Perhaps that “God was sending her a message?”
  • Telling her that she was making a “bad” choice?”
    
  • Telling her she was “drugged”
  • Looking at her funny when some of the other coping, such as ear plugs, if done in public were somehow “wrong?”
  • Interfering with previous medical care in past years?

• Support the decisions that she (or he) is making within the limitations that s/he probably has to make them, whether it's one you would make for yourself or not.
  

Remember: It's their body—their disease—and their future that they have to keep in mind when weighing all the factors. You can say, for example, “just have a nerve block.” Well, the RSD affects my entire right leg. There are hundreds of sympathetic nerves. Also, for example:

• I have a manic/psychotic reaction to steroids, if they are used.
• They have to hit exactly the right nerve of hundreds of perhaps thousands of nerves
• 50% chance, if that, that it will work
• If the needle is inserted even slightly improperly, I could end up waking up with Stage IV, full-body RSD.
  
• I have a severe iodine allergy.....as in anaphylaxis....
  

I am the one who has to live with the consequences......on the other hand.....

• It could work, and I could find relief. 
• No garuntees. But relief would be nice. 
• Just please, please, don't tell me what to do!!!

But don't become an un-paid caregiver either: no one wins! If you find yourself in this role, a gentle, but honest and firm conversation about what you can/can't or will/won't do each week is best for both parties. Don't leave until you're both clear on what you can/can't do. Stick to your boundaries, or you will end up resenting the relationship and will find yourself dodging the other person, or “hating” them..........and yourself.



Be honest. Be a friend. But if your friend ever offers to pay at the movies or fast food, graciously accept and say”Thank you,” rather than argue about how they can't afford it. It can hurt, and ruin someone's long-awaited way of feeling like they are “finally giving back.” When you are broke most of the time, it can feel good to treat for a change, even if it sets you back!

Things to Not to Say to Someone with Chronic Pain/Ways to Help Someone with CP

Some "Unhelpful" Things to (NOT) Say to Someone with RSD

1. You can't be in that much pain!!! (the alternate version I got was; "You're too young to have had all this happen."  Well, clearly I am not--dummy it's there in front of you,  can we get down to business; and don't act like I am stupid, I am well educated, and I don't need any of your crap; RSD gives me plenty of that, thank you!")
2. No pain, no gain!  (Uh, huh.....you done PT with RSD....when do I stop before creating damage, and when do I stop at the right time that I have benefited myself????  Oh, come on, you know--you are the one who sends me "RSD101" every morning!!!)
3. Stop being lazy and get a job.  (My RSD doesn't take breaks, vacations, etc.....dealing with it is a full time job, thanks....)
4. Your illness is caused by stress.  (Presently, it's the confusion created when my mind has to override the body's basic desire to choke the daylights out of someone [presently, you] who so desperately deserves it!!!!)
5. It's all in your head.  (What's in my head is some very un-Christian thoughts about choking you, but I pity your ignorance instead.....and how insulting)
6. It's all in your head.... (yeah, the confusion created when one's mind has to override the body's basic desire to choke the daylights out of someone [like you] who so desperately needs it!!!)
7. You're just having a bad day... (actually this was me on a good day!)
8. This will pass....I had one neurologist tell me that basically RSD has been known to "go away over night" (Now, I know about remission, but this chick told me I'd go to bed one night, and wake up the next morning and not have RSD!!!  Uh, someone get me that woman in seclusion and restraints--she's dangerous! :) )
9. Just get more exercise....(Yeah, gimme a power chair and we can do laps til the batteries are dead!!!)
10. But you look so good.  (Compared to what?)
11. Hang in there  (where?   My closet upside down like a bat?)
12. Guess you'll have to learn how to live with this, won't you, then? {snide tone}
13. You'll just have to tough it out....(uh huh, right!!!)
14. Just pray harder.  If you were a better Christian, you would be healed.  (I will pray for you tonight...that the hoofprints of 1,000 chronic pain/chronically ill people don't find out where you live...seriously, that you could belittle anyone's suffering with such an ignorant statement, I hope you never end up with something like RSD....cancer.....and have a doctor tell you to just pray harder.  Sure we pray for something, and for strength, or a good night's sleep; but you're sounding awfully judgemental....)
15. It can't be that bad.... ("Oh, it can feel that way....")
16. It could be worse....  (RSD can get worse you blockhead!!!)
17. It must be nice not to have to work.......(and watch my hard earned education go down the toilet, re-direct old clients, miss my work, miss the distraction, and know that though in work, I earn vacation, holidays, etc, my pain is there every minute of every hour of every day: no "smoke breaks," no lunch breaks even, and some days parts of my body are useless...a life-threatening emergency surgery could cause my RSD to go full body...I feel like I live constantly with my "deer in the headlights" look, like I am looking over my shoulder because it could save my life and change it forever; throwing me into full-body RSD: I've 2 close friends this has happened to.  One was saved with ketamine coma, the other lives in constant misery.
18. There are people who are worse off than you are....You think I don't know that--that my constant fear isn't that my "treatment" will turn on me?  That I don't fear I will become one?

So, yes, the RSD101 is archaic--although well meaninng


And my life has changed: if you ever stopped in for a real listen....you would know.


(c) 2011 JJC

DELETE the "Peanut Gallery"

Burning, firey, hellish pain

endured day after day;

It comes into existence when

least expected, and is here to stay;

It will abide, continue, endure, last, remain, and stay,

just when you think you can't take another step;

the RSD tells you "NO!"

Some stubborn, if not childish bore

in your head says,

"I'm gonna give you the finger,

and I might pay tomorrow,

But YOU will NOT have the last word, step, stitch, or whatever.

The next day you are in bed,

hating yourself, cursing your own stubbornness,

asking why did you have to be such a fool?

 

It wasn't foolishness you sought.

It was normalcy.

No pills by the bucketload....

no "experimental procedures,"

that could kill you, cure you, disable you for life,

cause a spread, cause  it to worsen.

 

But all these "RSD101" articles in your email

almost on a daily basis when you think, 

"Uh, former nurse-think I might have done some of my own?"

Or that my specialist might have caught it

ten or twelve years ago 

when it was first written..

You sigh, and hit that well used button...

Laura Black: CRPS

This girl has been beaten down by pain:  I won't go down like that!!!!

But our stories are way different!


http://www.abc.net.au/catalyst/stories/2621515.htm

RSD-Another Video-The Unwelcome Visitor

Originally posted

~August 15, 2011~You are my unwelcome visitor,
Like a party guest who won't leave
Only you are so much worse
You come in and in one stroke,
Cause so much suffering, so much agony,
So much heartache, so much damage...
Living with you every day is a living hell.

No one wants you around,
The life I do have you are miserable.
A torturous, living, nightmarish living hell.

You stalk your victim like a wolf stalks its prey.
But at least the prey knows where to hide.
You are with me every minute
Of every hour
Of every day.
Now diagnosed with RSD,
I know you're not going away...

Going to hell is where you belong,
I want you to leave me alone dammit!
I deserve a LIFE!!!
You feed on people,
their negative feelings,
and that is how you survive,
how you grow and how you thrive!

You are worse than a parasite,
but smaller than a tick.
No one can see you,
Until you have deccimated their lives......
You are the perpetual thief,
You take everything away from someone,
Life, freedom, and a sense of peace...
You have solen my selse of well-being,
My ability to even so much
as get a peaceful slumber
It feels like I am forever your prisoner
Your servant and your slave.

I used to love and enjoy my life.
I was happy, satisfied, productive, and free.
You have stolen it all from me.

And with "malice and forethoughought"
as the CJS says
Like the murderer you are!
Oh, don't you remember Eric?
The tears his mother still weeps?
The memories of him we all have.
Eric before the pain and RSD.
Eric after the pain and RSD.
A different man. And different FATHER.
You crush a person's sense of hope
You steal their spirit. Their zest for life.
Their desire to live, and hope that something will help..
Eric drove away his wife; she divorced him;
begged him to come and see his girls
He refused, didn't want them to "see him that way."
He drove away his friends,
leaving him with only one,
who's help he also refused.

I could let myself fall into your deadly grasp.
Think that if I had to stay in that life
for the next 20 year, 40 years,
However long I might have, that,
Well, I might well put a bullet in my brain now
Because what you have stolen is hope.

But you can't have mine.
If I have to close my eyes and talk out loud to Him
I will, I will not, however, let you steal the ONE thing
that has gotten me through the medical HELL I have
been through...the MRSA, the sepsis from it,
The bowel resection from gangrenous bowel,
the poison that floated through my blood both times.
Both times I lay in the ICU, my temperature higher
than I care to think about.
and the damage it did too my body.

But I survived BOTH TIMES.

And although it's been longer than I've showered
than I care to think about, I won't let this
defeat me, I won't let let this beat me.
Though it feels like my
skin is being burned off
as soon as water of
ANY temperature (cold, tepid, or hot),
I will grit my teeth and get through it.

Because I do not allow in
an Unwelcome visitor.

Go away, get out,
you are not welcome here.

I have two huge Rottweilers
that can make it to the fencein under 4 seconds......

the last dummy who tried to beat them
got 55 stitches.

How fast can YOU run???


Bipolar and in pain...Take Some Ally for relief!!!

September 19, 2011

You have no credibility...
None whatsoever...when the average person
tells their doctor they're in pain,
they're taken at face value.....
It's assumed they really are in pain.....
But I have "bipolar" so God knows
I couldn't possibly be in pain....
Couldn't possibly be sick if I said I was...
Because I am not to be believed....
Always order a "psych eval" first,
make sure I am telling the truth.

Let me tell you a story...one of my life...
I was sick as a dog...in pain and throwing up...
No doctor would so much as "take a picture"
of my abdomen; see what might be going on;
I'd not seen any of the psychiatrists within
the "world-class" teaching hospital by my house
I kept banging my head on the wall with them...

Til one day when I wised up....and I'll tell you why.
I got a look at my chart, and saw what they
had decided was wrong with me;
They would needle me for blood on nearly a daily basis,
But I am certain to say now that they probably
simply threw it in the trash, if they'd run it;
even done a CBC, they'd have seen I was critically ill.
But no, I am bipolar, so in my chart,
my primary diagnosis of course is bipolar,
underneath which, a third year, untrained med student
scrawled in his pen "Munchausen Syndrome."
It was not confirmed by faculty,
but treated like "holy grail."
The work was done...by a kid who's braces had
only just come off, unless using Invisilign....
Forgive my sarcasm, it nearly cost me my life...

I caught on and finally landed in the lap, thank God,
of a talented surgeon, and one who also trusted his gut
ironically enough...and I had not one but two
primary tumors...one in the reteroperitroneal cavity,
and on went my eighteen month gig with chemo,
and the horrors that go with it.......

I pray for Ally,
her story touches so close to home....
I dedicate this to her....
I forgive those people at the hospital,
that's the type of person she is....
she's the inspiration for this

Too weak for the chemo for a bone marrow,
my son's stem cells were infused into me
in hopes of stimulating normal growth of cells...

July 4, 2011 was my Independence Day;
My 3rd birthday from having cancerous cells in my body...
I am free of cancer
I am free of resentment and anger

Thank you, Ally!

Hurt By the Fam...AGAIN--Shame on ME!!!!!!

You hear the phrase "Once-shame on them, twice-shame on them, three times-shame on you!!!!!"

Shame on me for trusting the wrong people; and shame on me for thinking that a conversation would stay private.

Shame on me for someone taking me at my word; and remembering that RSD has no cure, only treatment, only hope and prayers that thingsss will improve.  Shame on me for thinking that my family would remember that I don't sleep well; and sometime for days at a time!!!

Shame on me for believing that any member of my family could believe my pain is actually real!

Shame on me for trusting any of  them at any point in time.

They deserve what they get; they'll get what's coming to them; of that I must have faith!!!!!

I want to say I hate the whole lot of thhhem, but I don't.  I just hope they don't ever get something like RSD.......

I pity them, feel sorry for them, and pray for them... but I am about, except Lisa, surprisingly, to cut the whole lot of them off--they're about to drive me nuts with the hypocrisy.
I can't trust my brother to go running to my mother...who makes my life hell now that she's retired and got nothing else to do; and I want to scream; I wasn't 100% sure I could trust him, and now I amm 1000% sure I can't.  And it hurts--my big bro is supposed to protect me, watch out for me, and and I should be able to trust him....

But my heart hurts, feels broken in two that I can't tell him something, without it making it's way to her hurtful, angry, horror--stricken heart...her heart is so cold, like ice...


It's so sad; someone had to have hurt her bad to make her this way.....

But shame on me for trusting her hurtful heart....her angry, hateful, borderline, narcissistic heart...it is what it is.

I know better next time.

My Resolutions for RSD today

I have RSD.  Here's my resolutions:

1. I am going to do laundry no matter how my leg burn or sweats.
2. I am going to do something enjoyable, no matter how bad the pain.
3. It's the day after my 37th birthday; I might catch up on som sleep, if I can.
4. Today I will make a video.

My RSD Tribute!

The Things You Take for Granted

To the "normie,"

There are so many things you take for granted.  Don't beat yourself up, I once did too.  Keeping food down without medication that makes you slur your words like a drunk.

Chronic infections.  Being even able to eat without medication at all.  Let alone medication that makes you talk, look, feel, and act stupid........

Exhaustion at a level you never knew before, you take medications that slow the nerve impulses, and they make you feel, look, and act drunk.....You are accussed of being and talking and acting drunk....you are abusing drugs, you are doing something you shouldn't be.....Everyone is suspect, everyone is giving you a "psychiatric diagnosis."

It's funny; the specialists--right down to a damned dermatologist (and really-who would sit and aspire to be a dermatologist??????  At least a plastic surgeon and treat burn patients, do something useful, rather than rashes that can be cured with Gold Bond and mouthwash....) get an ego about it if you ask a question; even explaining that youwere a nurse in another lifetime.......

But they can throw something as damaging as "Chronic Pain Syndrome," which sounds benign enough:

http://emedicine.medscape.com/article/310834-overview
http://emedicine.medscape.com/article/310834-overview#a0104

So now you're a head case.  Why not come right out and say "Munchausen Syndrome" which I was diagnosed with when  what was the correct diagnosis?

Cancer.  To be correct, Stage 2 non-Hodgkin's Lymphoma.

By an unsupervised third year medical student, and no faculty or resident signed off on it, but it went down as a "primary diagnosis.

Cute.

But to forgive and let go is to find freedom.  To hang onto resentments annd anger serves only to burden the soul...and bring more pain.

Got enough in that department.  But make sure CPS ain't on your file, or you're screwed...marked for life...just like any patient with CP who are on "those meds" are always encouraged to find a way to get off.

I'm entitled to life, same as you.  Whatever it takes, it takes.  But no one gets to label me except my Creator.


J

Sleep, unassisted.