My Response Letter to RSD

RSD,

You an unwelcome "party guest" who won't leave, who is totally drunk off their ass, and you have been asked repeatedly to leave, yet you refuse to do so.  My primary physician doesn't now you well, and you may get me thrown out, all because of you-I am so tired of feeling like I spend my life in a doctor's office for one reason or another, or the ER, the line at the pharmacy. 

You take more than 50% of my income which is less than 60% of the US National Poverty Level, when I used to make six or seven times this.  I am tired of my first conscious thought being pain, and my last conscious thought being pain.  I am tired of not being taken seriously.  In short, I am tired of YOU. Oh, and it hurts mentally when doctors think RSD is like any other form of chronic pain: give pain meds and you automatically get better when your benchmark is people who suffer at your hands DON'T get better, "even when treated with pain meds. 

God, how I hate you.  Every time someone loses you chalk it as a "win," you stinking jerk.

Even if it was a life on disability, I want my life back-I hate you and all the misery and pain you bring-the suffering and the sickness.  The moodiness and depression, the sheer and utter exhaustion--and the frustration.  That effective treatments aren't "allowed" in my state, and unlike so many, I can't AFFORD to travel and I am tired of having my diagnosis being labeled mental. 

I dread opening envelopes from my doctor: especially when a miscommunication on my part may have been responsible, I fear, now with you breathing down my neck and ROTFL every time a blow shows up in my mailbox.  Whether it's my labs are crappy.  I won't be seen by some pain doctor...and so much has happened today, I am scared.  And you are ROTFL (Rolling on the Floor Laughing). 

And every heartache you cause too, I know you are ROTFL.

I didn't want you, if I could wish you away but the burning tells me you are oh, so and way too real.  I will fight you every step of the way.  And I will be ROTFLMFAO (Rolling On The Floor, Laughing my Fucking Ass Offl when, one day, I smear you-and use you to mop the floor with you.

I will get my health back-physical, spiritual, emotional, and that you've pushed me into a state of ill-health, mentally incompetant, as my own family believes: is BS--just as they are as cruel sometimes in their words as you are to my body--they are to my heart.  I will work hard and kick your ass all over-in every way I can!!!  So we really will see who wins in the long run who wins-you may have won one or two battles-but in the war, I will prevail and show all who are there that those only with ROT in themselves ARE ALWAYS LONG TIME LOSERS!!!  As are those who victimize are losers who cannot recognize the ROT WITHIN, and they are hopeless causes!!!

GET OUT OF MY BODY: YOU ARE NOT WELCOME HERE!!!

Your Un-Victim,

JJ

A Letter FROM RSD/CRPS

Dear the One Who Least Expected it...

You are the sorry one, not me-I am laughing right now...

You may call me "Really Shitty Disorder" and join support groups with others I have come to torture, and to those who have to PAY for their own treatments, who would spend any penny (if you hadn't spent it on ME, hahaha!), or sell every last possession (if you haven't already or just don't have any) you had to get rid of me, I have news for you: I am not ever leaving.  

My mark has forever been left forever upon your body: your portacath because I came passing through before you knew what I was and sought help from some clueless doctor who wasted your veins doing labs and maybe lab draws-if you were lucky, giving you something to temporarily relieve your pain.  I am also KNOWN as the dreaded "chronic pain" though I hate it's accuracy of "intractable pain" or "intractable chronic pain"....

and when those PCP's "give up?"  Oh, I get closer...so much closer...What will the doctor try next?  I wish him (or her) luck.

Or when the man with rats in cages whispers in his ear again and he does something else admittedly stupid

I am in your internal organs now.  

Tick, tock, tick, tock--and I sure am not your biological clock-or Father Time? But, only I, you silly thing, will know for sure....hahaha, that is gone too, ya sorry excuse for a person...no--that is either the clock ticking on those long and sleepless nights when no one, not even your "loved ones" (yeah, some loved ones, seems they can't get away from you fast enough or far away enough), tick...tock....tick tock...oh, I am so having the fun!

 For relief you take powerful medications, would subject yourself to experimental treatments if you could afford to..gone is your job you said you loved, and gone a career you worked for-I am proud of my skills as a thief.

But I know you are wavering, oh, how I know--like many before you: I want your spirit;

I won't leave without it.

Tick tock....as the medical equipment piles up in your home....IV's, TPN....tick tock, tick tock....

But I am patient, I will wait.  I love the broken spirits.

You seek companionship from others I haunt, you see that some are in it too for themselves--oh, who to trust, who to trust;  You can fight, you can talk amongst yourselves how to beat me.

Keep talking.  I am a patient listen

With love,        
RSD 

November 2011

March 2012

MINUS 76 POUNDS, IN 5 months

"The Thief of good health."                                                   

MUCH NEEDED BREAK IN HUMOR!

He does this every time I use the bathroom (or any unknowing houseguest who leaves the door open....I think it's hilarious--this I took with my phone, and it just if bloody funny!!!

Wonder if he's ready to learn to USE the toilet???

Psalm 91's Comfort and the Story Behind It

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."  Surely he will save you from the fowler's snare and from the deadly pestilence.  He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.  You will not fear the terror of night, nor the arrow that flies by day,  nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.  A thousand may fall at your side, ten thousand at your right hand, but it will not come near you.  You will only observe with your eyes and see the punishment of the wicked.  If you make the Most High your dwelling-- even the LORD, who is my refuge-- then no harm will befall you, no disaster will come near your tent.  For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread upon the lion and the cobra; you will trample the great lion and the serpent.  "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.  With long life will I satisfy him and show him my salvation."

My Story Behind it:

Bev was my last patient and this was her favorite Scripture.  She kept asking me to read it to her in her last days.  I remember the moment she went even-I was on the stupid phone with a friend.  I thought for a long time because of that I shouldn't be in nursing and then realized that she hadn't been expected to go so quickly and at that time.  Oddly though, she had never before asked anyone to be her "prayer partner" and in her final days before she went comatose, she asked me over and over.


It's been MY favorite since.

WTF, WHO THE F*** WANTS RSD??? AND FIBRO BEARS

Parts of the visit with ARNP

It was frustrating: I was beginning to feel like she was a bit thick; where the idea that I had back surgery?  Probably all the radiographs and MRI's of my back--but hey--read the surgeons' notes:  all six consults I was pushed into having, and the docs all turned me away.  Why?

• I have scoliosis which would turn any surgery into a full anterior-posterior fusion, using steel rods on both the front and back of my spine.  With RSD, that begs foooor
• No doc wants to fuse more than 2-3 vertebrae at most.  My whole lumbar spine;
• The lumbar fusion is done through the abdomen, and one consult ago (God, disgusting how that sounds--not a "doc shopper..." but anytime I would say "back pain" followed by "sciatica" or "nerve pain in my leg" about a jillion consults followed, an MRI, and a visit to the surgeon who always says I am far beyond surgery)  
• Well, even I didn't know was, plus they go in abdominally, and with the abdominal MRSA infection (my brain says "Not on my malpractice premium") and further spinal stenosis and deterioration, which left me with a severely pinched (and painfully so) sciatic nerve ) sciatic nerve.
• Not one of the SIX REFERRALS, except Dr. J. Scott Price, MD, explained that risk-wise to my health, surgery would provide at best, anatomical correction,, but not the stenosis, but no correction of that could be done.
• Let's see if I can remember all:
• Timothy Massey (who until a very badly botched surgery partially paralyzed a young, 20-year-old woman-who thanks to a multi-million dollar settlement got her excellet privately funded care, she was able to walk again) the man obnoxioously told me either what all was wrong besides"a slipped disc."
• Dr. Ali Nainni, MD-didn't examine me, just sat across his giant seeming desk and said, dashing my hopes for long-term pain relief while the ASSHOLES AT COMPASS HEALTH TOLD everyone, that 2 days after SURGERY AT Harborview with 8 weeks to follow in a cast for a broken right wrist I was shortly afterwards thrown under the "druggie" bus.
• Dr. Stephen Ratcliffe, MD-cold as ICE
• Dr. J. Scott Price who took the time to explain WHY surgery was NOT a good option!  Thanks, see ya.
• Dr. Laoprasait.  Wonderful guy.  Cemented my RSD diagnosis ah, now they leave me alone.  The only way now to correct the scoliosis: halo traction.  Think I will pass on that.  Twelve weeks???  No way!

PART II-THE DOC COMES IN

I come  to the end of a nearly exasperating visit with the ARNP and when she determined I had actual RSD, I find out that lately they've had a influx of people with other pain or fibro (which they  can help treat successfully!!!!!) and idk if it's an "In Vogue" or a desire for drugs; or they just want pity for having the most painfully documented disease of chronic pain.  No-I would RATHER have fibro.  And maybe I do, and tell me it sounds sick-fine, go straight ahead and say so.

Feeling like you've been lit on fire and are like that 24/7, 366, and perhaps the allodynia is more severe, plus our hyperalgesia, and so many other "hyper's" and the phonophobia is the one I hate the MOST. 

But I was in the RSDSA's Facebook and members of the RSD Support Group, and littering the roster were were members with names like:

• FibroReallyHurtz
• FibroHurtz

Fibromyalgia is painful-I won't ever deny that.  But to say it's as bad as RSD: 

Christmas Eve, does your body do this?

 I took my muscle relaxers (both the regular and back-up; which puts you on your lips; talking like a loon, but I got my shoes on so I could go out with my family--oh, what fun!!!!!!!!  Nothing compared to what Christmas Day had for me.....

Christmas Day--and this didn't let up for HOURS:

 These were taken under same lighting; the same everything.

Or do you have this happen to your "good foot?"

Or it's just too painful to be touched?  

By anyONE, anything, 

Even warm, soft materials that usually bring relief?   

I mean the kind of pain that you lay there and shake?  

You don't throw up because you've not been able to eat in days!!!

So sensitive you can't bear to going to the doctor; or increase the "Stupid pill," you want a cool, quiet dark room....

Fibro = RSD....I have to disagree, some similarities--but not on the scale of RSD.  I have to beg to differ-and find little in common and I don't find it helpful when I feel like this:

1. bang your head (hard), no, I mean, really slam it, with a brick.
2. throw acid on the part of your body you feel is affected by RSD
3. Then douse it in jet fuel (burns very long time) and light the fire.  You are to burn 24/7...365 days a year.
4. Then when your wound is raw, people pick up wire scrub brushes, and brillo pads and scrub at you.  They continue even after you beg them to stop.
5. Every sound is amplified to that of a jet airplane taking off..
6. You may look normal-so no one believes you..

And you get smacked across your head over and over-no sleep, bags under your eyes, etc!!!!

Fibromyalgia on the McGill Pain Index???  In extreme cases where it is way more likely to be RSD no problem, come on in, but ya ain't getting anything like a childbirth rating!!!  Or the 42+ of RSD...where they classified me as having fibro-I still am not buying it being closer to childbirth than a 24-26.  No more; 2 diseases; 2 classifications-got it???!!!!!

Good Lord, who the fuck would want to have RSD.  I can draw a lot of things-not even RSD.....

skin sores, hypersensitive hearing, portacaths for IV treatments, being a shell of your old self?

ONE YEAR:

MARCH 2011

MARCH 2012

I hate to think what 2013 shows
.....if anything left at all....

Gastroparesis & RSD, or simple logic?

Yes, the pain can take my breath away, no matter how hard I try to keep it from doing so--no matter how hard I try,  I spend the night in the bathroom throwing up.  Just from the pain!!!


Unfortunately they think treating the nausea caused by the pain will magically go away!!!  Good, God Almighty, do I got to spoon feed this to you?  Flight or fight response:

• blood diverted first away from gut before almost anywhere else as the body directs it to take of like a 747.
• 747 lands, blood is diverted BACK to gut-then body realizes food is still there.
• you throw up for several reasons:

                  1.  food has festered, giving off noxious gasses (much like a rotting corpse, even a dead plant)
                  2.  Your gut suddenly has blood again, and it is in a sense-reset: Time to regurgitate, start fresh!
                  3.  Bacterial contamination of the food while blood was away from the GI system
                  4.  Shock to your system from not being able to eat by fending off the "Fight or Flight:" and you
                       reflexively purge!
                 5.  Suddenly moving food that has just been sitting there with finally having blood flow to your gut
                      it often isn't just a matter of vomiting.

God people--LOGIC?  Anyone has heard of that lately?  I believe the theroy a flare of RSD causing GI stasis is crap, stupid,, etc, it is activation of "fight or flight by the CNS.

Does ANYONE think this makes a teeny bit of sense???

Why am I spelling this out to people with degrees more advanced than my own

Eating the "Four F's Diet, of Dr. Hooshmand's website (which for the LOVE OF GOD makes me want to smack him!!!  Fool, does he think people who's brains are damaged by brains are gonna figure out what he means by "Puzzle 132?"  I saw that spread and at first thought he was kuckoo!!! And a side note: you really do have to be a fool to think people who are often on food stamps from years of pain can afford fucking VEAL?  Maybe if I stole the calf from the barn!!!

Who's the "APRIL FOOL?"

Fuck, of course I am!  Who are we kidding here???

My dad, mother, all of them, say they're happy I won't be their problem?

They are the ones who have the problem.  I got my own place, and not ever can any of them say again, "Hey, bitch, sink or swim!  I am gonna walk away and NEVER HELP YOU AGAIN!  Well, ha, ha-go ahead now, because I can survive without ya just fucking fine!!!!   Gonna apply to finance a new laptop through Office Depot-not anything $2000 or anything, but fuck you, if I am gonna be played the fool for having to chase after you again and grovel just to survive.

Having RSD is ugly enough.  I disgust you, ok, no problem.  I can walk to.  Then you can't keep feeding the monster from within that gets you coming to my door to see what "help" I need so you can look down on me and feel superior, and Lord what you have and I don't over me?  Alright, ya go ahead and do that..

But do it from a distance.

Ya know, Mom was all "boo-hoo," oh so "Cry for me, I will miss my sick and troubled daughter."  Eh, whatever.  She is now sweating out what I have for so long--Will this doctor who is good at what he does "accept" her or not, because she is fucking on Medicare?  Ha, well don't count on it-learn to settle for what you can get in this life and that the grass is greener on the other side?

You think life is on a downhill slope because you live in a sunny state?
Well, it gets just as hot as it does cold.
RSD hurts as much in Southern United States as it does in Thee frigid weather of the fucking north.


So maybe I used you, sure, it's possible!!!!  But you used me to see how much more superior.  My scars tell a story, intricate, with so many twists and turns.  My story is one that will maybe get folks to pause for a moment to listen with interest.  I humbly shut up for a while...people may wait for the next one.....or they may at least remember the "Survivor" of maybe things she perhaps shouldn't be here to tell the tale.

But I am.  I do-with people who care to listen.  Otherwise-I am happy with a good book, quiet music, and my cool, dark room to be left to write.  Take a nap-chat with friends on the phone I care to talk to.

Those of falsehoods, people listen and forget.  It's black, many shades of gray, but no real color.  No truth, honesty and beauty to cultivate. 


LOL...only a lot of shit to fertilize.