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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, December 6, 2013

Friday Tidbits: Hunger Games & Give Me Attitude?

Oh yeah...I've had it with ER attitude....this old girl (moi, not just JL) is on fire! 

OMG!  I have finally figured out what it is about The Hunger Games that has captivated me so much.

In the last few days I've spent hours on YouTube watching Jennifer Lawrence interviews because I can't seem to stop thinking about the movie and the book.  I don't think I've ever identified with a movie or book as much as I have with THG and have tried to understand what it is that has gotten under my skin so much.  In trying to figure out why this "obsession" with THG, l came across one interview which led to another and so forth. But it was the David Letterman interview of last month that made me stop and go, HUH???

First of all, I didn't realize how funny, charming, self-deprecating, honest and even witty JLaw is.  When I stumbled upon her interview with David Letterman I couldn't believe what my eyes were seeing and my ears were hearing.  Evidently, JLaw had three weeks of stomach pains to the point where she was forced to cancel a few interviews promoting The Hunger Games: Cathching Fire, finally going to an ER where an endoscopy was done.

She was/is having problems with her intestines and has actually been vocal about it, even making fun of herself.  Example: she went to the ER thinking she had an ulcer but found out it was a "fulcer."

And so, one of the seemingly last taboos of Hollywood has been discussed - that is, by a person who's under the age of 80 - and I'm not sure 80-year olds have gone "there" either. So, good for Jennifer!  What's not so good, however, is the reporting of what her problem actually was, by those who are not in the know.  A  few papers had the nerve to say it was "just gas."  (Last I've read or heard is that her lower intestines need to be checked out - there'd been no time.)

It took JLaw's gutsy admission (pun intended) during the Letterman interview for me to finally realize why I've been so "obsessed" by THG.  One of the themes in the movies -and the books - is the helplessness one feels when the powers-that-be take away the power of a population and what that population is forced to do. Worse, it's also about what happens when a population is brainwashed.  And finally, perhaps worst of all, is the price one pays, psychologically and physically, when a people are forced to go against one's standards and stoop to the level of those around them.  

So, what does all this have to do with ME/CFS/CFIDS and fibromyalgia?  And why this, why now? Why write about JLaw and The Hunger Games yet again?

Let me tell you, I have felt helpless with each of the six ER runs I've had since October.  Like many who are reading this, I felt completely at the mercy of the staff, most especially when I knew that I was getting misinformation, bad treatment, WRONG advice and a whole lot of other incredible ....let's call it "stuff" instead the other "s" word I'd like to use, especially given what part of the body both JLaw and I are having problems with.  

So, what does all this have to do with ME/CFS/CFIDS and fibromyalgia?  It's bad news for us.  The attitude and hostility that one encounters in just about any God-forsaken ER now is just about par for the course for just about any health problem which appears in the ER, visible or invisible.  I've known of people who've had this happen to them, but in the last few years the GOMER syndrome has become so out-of-hand that I feel I need to write about a blatant example of what happened to me during ER run #3.

Oh dear.  I just realized that some of you may not know what GOMER stands for.  Hmmm.  OK, the short version: though originally used for demented elderly patients, this "sweet" phrase evolved to mean just about anyone who comes into an ER and the staff (read "doctor") feels that patient isn't worth the "staff member's" time.  It stands for "Get Out Of My Emergency Room" and an example of the usage is: "Get that GOMER out of here!"  This expression is used throughout the States. Shocked?   Well, as long as we're talking, how about SHPOS?  That acronym is also often used by ER staff and stands for "Subhuman Piece of Sh*t."  (Imagine raised eyebrows.) 

Back to Jennifer Lawrence and The Hunger Games and my identifying with it all.  

When you go to an ER, you become helpless.  You have no power, no matter what "they" say.  (Keep this statement in mind below when I describe my nurse, please.)   Worse, you stoop to their level because you have no choice.  Finally, all too often you find yourself ticked off with yourself for resorting to their game(s), even if that behavior is the only means for survival.

Which brings me to an incident during one of my ER runs last month.  I've wanted to write about this episode but no matter how I wrote it, it would come out with me sounding petty.  On the other hand, it was such an unthinkable and unimaginative incident that I felt I just had to get it off my chest - as well as to forewarn others.  And I use the words "unthinkable" and "unimaginable" in the strictest sense, not as an expression.

For brevity's sake, I'm not going to go into everything that led to the incident.  Be assured that what I leave out is not something that might portray me in a negative light.  I'm trying to spare you, my lovelies, from a dissertation.

With this visit, I'd been in the ER for quite a while, for at least a couple of hours I want to say, without a doctor coming into the room.  Without a doctor coming in, nothing can be started: no tests can be ordered, no medication given, nothing other than your vital signs documented, such as temperature, heart rate and BP. Mind you, I was so ill and in so much pain that I'd called an ambulance.  (Imagine an eye roll here: the ambulance experience is yet another issue I've been meaning to address, but again, afraid I'd come across as sounding petty.)  

Despite the pain, I'd made the decision not to take any pain medication in the hours before going to the ER, because I didn't want to mask any symptoms.  I needed to get to the bottom of this mess because I'd spent a day (plus?) howling in pain, into pillows to muffle the sound.  I knew sometimes the howl would escape the pillow and worried that the neighbors might call the police, thinking there was a murder going on in our house. (Yeah, yeah.  I know.  But I couldn't help being concerned that those poor neighbors were worried about how they'd feel if there HAD been a murder going on and they hadn't called.  I know: I'm such a "nice, thoughtful" person. I told you I was "shallow"! -  see link!)

At any rate, when I arrived in the ER, rudeness and tension were in the air.  Walking into the ER - OK, being rolled into the ER on a gurney - I could feel what I want to call "bad vibes."   I hesitate to use that phrase, "bad vibes" because I don't want to sound too much like a displaced hippie.  On the other hand, we all know that feeling when the little hairs at the back of your neck stand up and you just want to ignore that signal.  Note: when we do ignore it, it's never a good idea - we should feel lucky that Mother Nature gave us that signal, for survival's sake.

There are two incidents that were just plain odd, weird, unimaginable which I'd like to relate:

I'd done some tweeting in my ER room, which helped the time go by faster, but more importantly, it helped to distract me and deal with the pain more easily.  I was working hard on not screaming in pain and not crying.  However, things finally got so bad that I wanted to call the nurse with the little do-hicky they give you to press in order to signal that you need help.  

First, it took a while to find the "do-hickey."  Then twenty minutes PLUS passed and no one had checked on me.  Keep in mind that the door was closed so I could have fallen off the bed or could have been having a seizure and no one would have known - nor cared.

Finally, not able to stand the pain any longer, I grabbed the yoga pants I'd thrown into my handbag, and was in the process of putting on my t-shirt over my (home) nightie when my nurse came in.  One look at me and he demanded, "what do you think you're doing?"  I didn't yell, I simply said, "I've been here for well over two hours and haven't been seen by a doctor.  I'm feeling worse than when I was brought here so I'm getting out of here before I feel even worse than I do now." 

The male stocky-ish nurse stepped into "my space" and said, "that's your prerogative, you can leave anytime you want," blocking my way to the door.  I stepped sideways to get around him and he again said, "you can leave any time you want, it's your right" as he stepped sideways to block my way out yet again.  This little dance went on for a few more rounds. 

I couldn't believe it!  He'd puffed up his chest and brought it to within a couple of inches of mine!   He was in my space and in my face.  He was saying the correct thing, "you can leave anytime you want, it's your right/prerogative" but he was doing the opposite in actual fact, not allowing me to leave.  You can't imagine what I wanted to do to him and had to work ever so hard to stop myself.

Another "discussion" ensued when he said the doctor would be in to see me in a "moment," a word I've learned to despise because of situations like this.  I wanted to know his definition of "a moment."  

I might add that this "young man" had been my nurse before and that was a joke.  A real mess.  So many things so wrong that I wouldn't know where to start.

But back to the ER run I've been discussing.  Time had gone by, the doctor had finally been by and tests were being run.  Yet everything was just so "off."   Everything was an adversarial situation.  More misinformation as well....

Eventually, things had "died" down and the nurse and I were in the room alone again - we were waiting for the doctor and lab results, I suppose.  I wanted to make peace of some sort but I also wanted him to know that his behavior was not really acceptable - in anyone's world, I wanted to add.  Furthermore, I hadn't said anything about his unprofessional behavior (and a couple of lies) during at least one other visit, deciding to let things go.  I never imagined I'd have the misfortune of having him again and I was also just too sick to carry on any sort of talk about "wrong things."  And that, as it turned out, had been a mistake.

So as kindly, but firmly, as I could manage, I addressed the problem of what had happened.  I was not going to let this go lightly.  After all, this was my third ER run in a month and I wasn't being treated nor helped. Pain was out the wazoo by now.  Furthermore, rudeness of any sort is just not OK in my book.  Unprofessionalism is also not OK in my book.  I also worried what would happen if I had to come back to the ER a fourth time.  I was between the proverbial rock and a hard place of before: I didn't want to burn any bridges but I also didn't want to get this sort of treatment again.

And so I said something to the nurse about attitude.  Wow!  What a blowup!

"ATTITUDE?  You think I gave you attitude?"  Now he's in my space again - in my face, again

"ATTITUDE?  You think I gave you ATTITUDE?"  I'm stunned.  

"You think that was attitude?  I can give you attitude!  You want attitude?  I can show you attitude, right here and now," finger pointed to floor for the "here."

And that's when I sank to his level - I'd had it!  How dare he?  I wanted to say, "are you on drugs?"  I mean, where does this sort of insane talk come from?  I said, "OK, give me attitude!"

"ATTITUDE!  That's not attitude, you've obviously never seen attitude,  I can give you attitude!  I can show you some REAL attitude." 

This sort of trash talk wouldn't stop, making a couple more rounds, and by now I was genuinely interested in what kind of attitude he could give me.  I really wanted to see it.  OK, so part of me worried he might have a stroke or perhaps a heart attack because his face was getting rather red and if there were no veins sticking out on his face as he was getting more agitated it would have been only because those veins were in too deep to show.  

But you know what they say about bullies. You confront them and they run the other way.  And I admit: Lordy, but I hoped it would work here!  But, yes, I was also curious at this point.  (Shoot me!  I'm human! Uh huh?  How many of you would also have wanted to know what attitude he could give!  Thought so! ;) )

I said "Come on, give me some of that attitude you think is going to 'impress' me!  Show me what you've got. Go on!  Give me your best ATTITUDE!   I've raised 3 kids, I'm old enough to be your mother, so *I* know attitude and I'm not sure you can live up to the attitude I've seen in my life."  

At that point I think he realized how out of line he was.  

There's so much more to the psychological games that were played that night-into-morning.  There was so much unprofessionalism and bad medicine done that day.  

And note: this is the visit I was told I had pancreatitis and yet sent home without having been hydrated with an IV bag, given no medicine to treat the pancreatitis and given no instructions regarding diet - you need to rest the pancreas and not eat.  (There are actually a few other outrageous medical actions here which I'm too exhausted to address.  In other words, I remind you that you're reading a very abbreviated and sanitized version.)

And  I ask you, who the H-ll sends home a person with pancreatitis anyway - and one running a fever!

Like The Hunger Games, I felt that I was in a life and death situation - there was a distinct possibility I could die with a bum pancreas if it was left untreated.   As it was, a few weeks later I had to be hospitalized for ten days with unbelievable level of "illness," to the point where things could have turned fatal.  Two weeks after that hospitalization, I had to be hospitalized yet again for a few days.  

When Katniss had the "nerve" to wonder about the way the government was treating their citizens, I had to wonder about how the ER treated its patients.  Just as a government exists for the people, a medical system exists for patients.  

Katniss didn't want to kill anyone, to change into a person she never wanted to be.  I turned into someone I'm not when I stooped to my nurse's level and I said, "go on, give me attitude."  

What's most unfortunate is that this sort of behavior is not a fluke.  There IS an attitude problem when ER staff have their own language with includes derogatory terms such as GOMER and SHPOS and too often think that waiting for 4-8 hours is not unreasonable. There IS something terribly wrong when ER staff thinks that saying one thing one moment and then changing their minds to the opposite of what was said is normal and fine (discussed in a previous post in regards to pain medication).  There's a real problem when there are electronic records that the doctors relies on solely without taking a patient's history - but that's opening another can of worms.

What's most unfortunate, however, is that what I've pointed out is happening across the board.  And yet some people wonder why The Hunger Games became such a hit, the books and the movies?   These things are not just frightening, annoying and uncalled for, but dangerous as well.  Hey!  What would have happened if "Nurse Attitude" had indeed keeled over from a heart attack when he went ballistic?  It would have been a bit of a complication.  More complications I do not need in my life!

As always, I hope everyone's doing their very best - only better!  Wishing everyone a very gentle and safe weekend, ciao and paka!

Note: I've not seen THG's Catching Fire nor read the book yet: gotta, though!  You never know what survival skills and necessities this ol' gal might learn to be put to future use! ;)

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  1. What happened to people entering the medical profession, whether as a doctor or nurse, to help people?

  2. What a jerk that nurse was! Unbelievable - some people really enjoy the power they think they can exert over unfortunate people coming into the ER. Disgusting. I think you did great by confronting that guy - maybe (maybe) he learned something?? We can hope.
    Take care,

    1. Yes, Martha, that's the word, "unbelievable"! Thanks! I'm still in a state of shock.
      Hope things are going well on your end. Enjoy the holidays with your huge family! :) xx

  3. Hi Sian! Good question. Though you most probably meant it as a rhetorical question, here are some thoughts.
    Not to sound too flip, but part of the answer may be found in my Vietnam War & doctors post. (Shameless plug but I think it's my best piece. Oh my, such modesty! ;))
    I truly believe that things are also getting worse because society in general has pretty much lost manners and, to a great deal, decency. Lying has, unfortunately, become such an accepted way of life as well - much to my horror since lying is one of my biggest, if not THE biggest, bugaboo...I literally see red when I hear lies.
    Furthermore, all across the board I see people not taking pride in their work. For example, if you saw all the things done wrongly - or not done at all - by our latest contractor - you'd be shocked. And we went with a top dollar one this time, precisely to avoid the sorts of problems we'd had in the past w/ other contractors.
    Look at the airlines! I had such a bad experience on my latest HUGE outing from the house. Having run into travel problems in the past, in order to get as much "care," "assistance" and "help" as possible - when I needed to fly to Malaysia, we bit the bullet for health reasons & bought business class tickets, which we could little afford. A small example of why we dished out those $$$: I didn't want to be denied water (yet again) on any of the legs of the trip.
    Well, that didn't help much. I was still told I'd drank past the quota of water allotted per passenger, and this despite, also, a note from my physician stating I needed massive amounts of water. (BTW: I was offered as much wine, liquor, soft drinks and juice as I wanted. Too bad those weren't options my body could tolerate.) And on the final leg of coming home, I was put in coach - and they didn't believe I had business class tickets despite the codes on my itinerary!
    But getting back to the problem of doctors. All too often doctors today are unable to practice medicine the way they want - because of awful restrictions, be the restrictions/dictates by way of insurance companies, government, or a huge corporation which gobbles up hospitals in order to make a LOT of money.
    Not too awfully long ago 60 Minutes had a great exposé on the corporation dictates in the last few years & it was awful to see more of what's going on behind the Oz-like curtain.
    Thanks for the comment, Sian. xx

    1. Yes, it was somewhat of a rhetorical question but your answers are impecable as always.
      You're so right about today's society. Lying has become the norm for many. The thing is with a lot of people and their tendency to brag on social media they're not even clever enough to not expose themselves. But maybe I'm just talking on a personal issue there. As I've recently had someone that had been considered a great friend and who I'd done a lot for lie and make numerous excuses as to why she couldn't pay back money that was owed. As I was too unwell to go away with them. Only to see them brag about going to America. I have a ic on my computer that says "when is decency going to be cool again?" It's so true.

      As for the medical profession you're right there. So much red tape. As we have discussed before with the morphine situation where it takes two members of staff to administer. There is a lot of blame culture about and people treading on egg shells. I don't know about in America but over here every second ad is for compensation. Even on children's tv channels.

      But something is very wrong when you are really ill and you don't "trust" going into hospital.

      Oh I could go on for hours now haha. I love our chats. Xx

      As for the medical

  4. Hi Irene. That nurse was completely insane! There are no other words. Talk about being on a power trip and for what?! Well done for standing up to him. So sorry you have had a rough week, poor thing. I hope the sewage problem is not a problem anymore.

    Thanks for writing back. I went to A&E because it seemed the better option than going to see my own doctor. I wasn't hospitalised though, I just saw a doctor there. After the first course of antibiotics didn't work, I went back where I was given a different antibiotic and had a chest x-ray. As those antibiotics made me sick and I wasn't convinced by what the doctor said, I went to a different hospital and am trying another antibiotic. They didn't do a culture though and it didn't even come into my mind to ask for it. You are definitely not stepping over the line when you said the ME diagnosis is not an excuse for the doctors. If anything, doctors do their best to act like I don't have it! I have doubts about my regular doctor not ok'ing a pneumonia vaccine as he would not see a need for me to have it. I changed doctors in January and unfortunately am no further forward. The battle continues!

    Thank you for the prayers Irene. You are so kind. I now want to read the Hunger Games even more now than when you first mentioned it!

    Take care, Alpa xx

    1. What a mess, Alpa. Hope you get some much-needed help and relief very soon! xx

  5. My oh my oh my what an abominable experience. I'm a medically retired critical care nurse. While I'm very familiar with the term GOMER and a number of others I'm thoroughly shocked you were treated like that by a nurse. I can't imagine ever treating a patient with such disrespect and quite frankly I'd say it's time for that nurse to find another niche because emergency medicine is definitely not his forte.

    Another BIG problem is that chronic pain patients are almost always viewed as drug seekers. It's passed along in report to the next shift and whispered about in the hallways. More education needs to be done with medical staff about dealing with chronic pain.

    In the future, if you're sitting unattended for hours on end or your nurse decides to dish out some attitude, use your cell phone, call the hospital (yes, the one you're sitting in) and ask to speak to the nursing supervisor.

    1. here here,
      we are seen as drug seekers, even if we refuse further pain meds.
      we are seen as too hard/complicated/ too much effort.

      I will remember your advice in future to call the hospital I am in and ask to speak to the nursing supervisor, but what if it is a Doctor treating you badly (See my below post)?? Can you call the hospital, patient advocade group, medical ombudsman???

    2. Thank you, "Bomb"! Yes, drug-seekers label is always a problem. And not only is the gossip in the hallways, etc, a problem, but the whole computer charting system is a mess. One wrong word in the wrong place and things get turned around forever or a label follows you forever. I've requested my charts and my oh my! xx
      I'm glad you mentioned the nursing supervisor aspect and have wanted to go into this in the future since it's a strategy that my daughter and husband use if necessary but I never remember to do so. Medical ombusman, as anonymous above says: they can be tricky. We had two bad experiences with them in a "major medical center," one of the most prestigious in the US.

    3. I need to have someone remind me to write a post on how we ended up with me getting admitted. There's more to the story than what I've written. What a mess! xx

  6. Yes, yes, yes...
    I have had both good and bad ER experiences my last (3 weeks ago) was a bad followed by a good.
    The bad began after I dislocated both of my wrists and thumbs (I have EDS-H/ HEDS) over 3-7 days before and had relocated them myself BUT they wouldn't stay located and were causing me a LOT of pain (I couldn't use either of my hands, fingers, thumbs or wrists, had signs of nerve damage and significant ligamentous and soft tissue injury), so after the pain got that bad I just couldn't cope anymore (daily pain meds did nothing, breakthrough pain meds did nothing, anti inflammatories did nothing, even valium did nothing), Igot hubby to drive me to the closes ER (about 5 mins from my home) I registered and waited to be called - about 1/2 hr as I was triaged cat 4), so I go in and see a junior Dr, who looks at my arms asks me a heap of questions about me,my history, if this has happened before, how it happened, and about EDS and RSD etc. I told her that it was NOT RSD pain as it was different, that I did thin on my left one in 2008 and the ONLY thing that helped was to be immobilised in a cast,so she goes off and talks to a senior Dr (I can hear them talking through the curtain) and the senior Doc comes in and my bad experience begins, to make long stories short - she told me to go home and take a panadol/acetomenophin (I am on huge amounts of narcotic pain meds, and my narcotic breakthrough meds are not working so she wants me to take a panadol (she may as well have prescribed M&M's), she then went on to tell me off because specialists and Dr's and physio's have given up on me because there is nothing they can do to help me (HEDS is a Genetic defect of the collagen/ connective tissue that makes it weak and prone to things like dislocations as well as effecting other things like skin and organs (ANYTHING made of collage is effected), she told me they couldn't do that, I told her that when dr says "don't bother coming back there is nothing we can do to help you" you are not going to go back.
    She then went on to say that maybe we could up my pain meds (I said I didn't want to do that, because that causes other issues (so I wasn't drug seeking - as many ER docs assume/accuse you are/of when you live in chronic pain, I turned them down). By this time I am crying in pain (having my arms examined was excruciating and with no additional pain meds even more so). She also told me that when I dislocate a joint I shouldn't go to the ER I should see a specialist, to which I said so I should wait 6 weeks to 6 months to get a specialist appointment each time I dislocate and put up with it until then... WTF!!! She then said there is nothing we can do, go home and take a panadol and go and see your GP next week.I rang my hubby to come and get me still balling my eyes out, and he came and got me. He was LIVID. He took me straight to the ER at the other hospital and after waiting 3 hrs to see a dr to make longer stories short, they believed me, still no pain meds, (but I have more than they can offer and am allergic to the one they do offer,so that wasn't a big deal), but they put both of my arms in dual back slab casts (ok the wrong kind, but it helped) and referred me to the outpatient fracture/ orthopaedic clinic. I saw them and lef there with bilateral (yes both arms) in full casts from knuckles to elbows and up my thumbs and a referral for an emergency/ urgent MRI as they think I have torn ligaments, and tendons and may have cracked/ broken some of the bones as well.
    Both the 2nd ER and fracture clinic were DISGUSTED with the behaviour of the first ER and told me to write an official complaint letter, which I still need to do as it is hard to write with both arms in casts and painful to use my fingers even to type.
    I get my MRI results on Monday but think it isn't good because the MRI Doc made me get a new set of x-rays as well even though mine were only 2 weeks old.

    1. Just because we have chronic conditions doesn't mean the er/ docs/medical staff can ignore our acute injuries and conditions (I went to the ER with an acute injury, I was NOT asking them to treat my EDS or RSD, but treat my dislocations and the damage that the dislocations and relocations had caused)...
      My hubby often goes with me as he is a wonderful medical advocate (and my full time carer),and he WONT take any crap from the medical staff, he demands treatment and treatment we know works, and won't let them say no.
      Hope you are feeling better and your pancreatitis etc has settled/ been treated correctly.

    2. Hi Shazinoz! I always say you need a health advocate with you. The fact that I didn't have one with me for two of my visits shows you how bad things can get when you go in alone. If you're sick you're often too ill to argue or explain or insist or realize you need to go to the top. And I admit I've been spoiled in that I was completely unprepared for anything "going alone" - someone's always been with me in the past. Perhaps I needed this experience to teach me how to defend myself intuitively and immediately???
      Thank you for the comment. Yes, the pancreatitis settled, but that was just the beginning of a whole other saga, with two hospitalizations. Yeah! Two hosptalizations? Can they spell SURPRISE?! ;) xxx

    3. Hi Anonymous of all-the-messed-up things! (How else to address you? smile!) You certainly have a huge history and I can only imagine (with a LOT of cringing) what an awful experience it must be for you if you need to go the ER or to see a new doctor. There is just so much going on with some patients. I know that I'm awful to "treat" in the sense that just explaining a tenth of what's going on is almost impossible and I never home in on the most important things. On the other hand, just because we're complicated or unusual or chronic or whatever, doesn't mean we shouldn't be helped not to mention treated with a bit of dignity. Those who work in these places are not there because anyone forced them to be there: they make a living doing their jobs. So, they should do precisely that: their jobs! Thanks for writing in (despite your poor hands) and please let us know how it goes. I do hope you get that complaint letter out and that you have better luck than what you've had in the past. One can only hope and pray. xx

    4. thanx Irene both posts are from me.
      you are very correct just because we are complicated doesn't mean we deserve less.
      thanx for the well wishes.


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