GOOD GRIEF!

It occurred to me today that I am grieving. I read a quote that someone had posted and here it is: "The reality is that you will grieve forever. You will not 'get over' the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but, you will never be the same. Nor should you be the same, nor would you want to." -- Elizabeth Kubler-Ross and John Kessler

I realized today that I was in a state of grief, and have been for some time. I was in shock when they first told me me I would need immediate heart surgery or a grave digger. Well, not in those words exactly, but you get the point. Upon being awakened after surgery and once I had my wits about me, I realized I was in horrific pain. I was told by the end of six weeks I would feel like a new person, that my pain would largely be gone, that I'd be able to breathe again without gasping for every breath. I looked forward to the surgery and was terrified at the same time.

I started grieving the day I realized that six months had passed and the horrific pain had never gotten better and would NEVER get better. I am grieving the loss of life as I knew it, which hadn't been particularly good for a long, long time. I've been ill forever it seems. But there were some things I could still do. Although physically disabled, I generally enjoyed life. I could get around, I could walk with my dogs, I could go places, do things--see actual people and interact with them. I could do things and occupy my time. I could clean my own goddamned house. I could cook myself a meal. I could get dressed all by myself. I could take a bath all by myself. I could walk out into the back yard and not have to take a phone with me in case I fell. I could make it to the bathroom before I peed in my pants. I grieve for my own lost life. Dammit, I had plans. Places to go, people to see, things to do. Gone. It's all gone. I am not grieving over the death of someone close, but it is grief nonetheless.

You know that stupid card the nurses hand you? The Pain Card? It shows a completely neutral face for zero pain. The faces get progressively worse indicating more pain, until you get to number 10, the worst pain. The scale only goes to 10. You are not supposed to be any more painful than level 10. I have never been on that 1-10 scale. I rate my physical pain at 12. In fact, this is the best pain chart example I could come up with:

Now, on top of the physical pain I have, I also have the pain of grief, which is a much different type of pain. The pain of my particular grief is more like a giant, open, raw, weeping, festering sore. It is not only excruciatingly painful, but it is ugly to look at. Slowly, over a period of many, many months, it began to get minutely better at the sides of the open wound. Microns of new flesh began to form at the edges, slowly, ever so slowly beginning to close. It continues that way unless someone happens to rake it open with a careless mistake, or a heartless comment. Maybe, just maybe, years from now, if I last that long, my wound will form a scab over the top. The wound will still be there, still excruciating, but not weeping, not festering. Maybe, just maybe in a few more years I'll grow some scar tissue over the wound. 

Scar tissue has a pain all its own. It hurts like hell if someone presses on it, or it gets bumped on a sharp table edge, but it won't bleed. The wound of grief never completely heals, no matter how much time passes. I may grow scar tissue, that's the absolute best that could happen. I am left with a giant, unsightly scar that will never, ever go away. It's a reminder that something, once beautiful, is now gone forever, reduced to scar tissue and gallons upon gallons of shed tears.

I have not 'learned to live with it," I am forced to live with it. I have not "rebuilt around it" because I will never be whole again, there is nothing left upon which to build. There is just a smidgen of truth to the above quote--just enough to catch your eye. The truth is I WILL grieve forever and I will NEVER be the same. The rest is bullshit, plain and simple. Elizabeth Kubler-Ross and John Kessler, I am here to tell you, you are both WRONG! How dare you feed false hope to those who grieve? Everyone grieves in their own way, that is the only certainty. You won't know until it happens to you. You can both take your precious quote and stuff it in your asses. Sideways.

OWW MY SCREAMY ::INSERT RANDOM PART::

I am a rigid weapons specialist. I have firearms and a crap load of tactical training. I have the peculiar talent of being able to pick up almost anything and use it as a weapon. My house is fully alarmed as well as guarded by two beasts who have the innate ability to pick out a bad guy at 40 paces, but not bite him until told to do so. None of these things are any help at all when I'm lying on my back in the dark at 1:00 AM.

A couple weeks ago while letting the dogs out, I fell. I was exactly half in and half out of the door, my upper body on the floor inside, and my legs stuck under the screen door to the patio outside. I absolutely could not get up. Rue came inside, through the Rue-sized crack in the screen door...I am glad I fell in such a way so the door did not completely shut. I was scared. She sat by my my head for about 15 minutes and scrubbed the side of my face with her nose the whole time I was blubbering. When I finally regained my wits, I stuck my right hand in her collar and she was able to drag me inside enough so the door closed. I was finally able to get my feet on the floor and push myself inside--sliding on my back while I pushed with my feet. I made it to the rug where I had enough traction to roll over and get on all-fours, crawl to a chair and eventually stand by climbing up the chair, although bent over at the waist, The time spent wallowing around was about an hour in total. I was not terribly hurt, just bruised and breathless.

The following day I realized what Rue had been doing. In the past, when she has wanted me up, awake and out of bed for various reasons, she will touch her nose to my cheek, then scrub vigorously back and forth. To Rue, face-scrubbing means "GET UP!" It has always worked for her in the past, why wouldn't it work this time? She was trying to help me get up in the only way she knew how, the way that has worked best for her in the past. If I have nothing else, at least I have a smart dog.

The latest on my screamy heart is I have a major (80%) blockage in the right coronary artery. I have grown a collateral vessel that is the only supplier of blood to the right side of my heart, and now it too has a blockage. Because of that I have near constant heart-type chest pain (over and above the chest pain caused by nerve damage). I am gasping for breath with even the slightest bit of movement. They can't fix the new blockage with surgery, and definitely not with stents, since it is too far down in the vessel. They can only give me drugs and hope that they work. In the meantime, I feel so bad that I am actually surprised when I wake up in the morning. I open my eyes and look around and think, "DAMMIT! I survived another night."

I haven't published since March. The biggest event in that missing time period was a car crash in early May, about which I am not allowed to speak per my lawyer. Gah. Suffice it to say I am still broken and seeking people to put me back together in the correct order.

My heart sucks more than usual, in that it has actually become an obstacle in treating my various wounds. Because I have metal in my chest, I cannot have an MRI. One guy said, "I can't fix anything I can't see. Without an MRI I can't see any of the parts." I shouted at him, "What the hell did people do before the MRI was invented? DO THAT, FFS!" This coming Thursday, I see a bone doctor. Oh joy, oh rapture, more pain...I can hardly wait.

You know, there is not much in life that I'm afraid of--I've been in a number of life-threatening scrapes. I have physically been unable to run for many years, so anything that calls for the flight or fight adrenalin surge, will always make me choose to stand and fight, out of sheer necessity. I developed skills that the ordinary person does not have just because my one fear is that of being helpless. Well, helpless is coming at me like a steam train, and there's nothing I can do about it. Skills mean nothing when I'm lying on my back in the dark at 1:00 AM.

OWW MY SCREAMY BOOBS, ROUND 3

This morning bright and early I toddled off to Dr. Turban-wearer's office. I waited in the waiting room. I waited in the exam room. When he finally got to me he said straight away, "I am sending you back to your referring physician and releasing you. There is nothing I can do for you."

"Releasing me? After only one visit and only one drug?" I pleaded.  No response. "WTF is the matter with you?"

"There is nothing I can do to help you." He looked at the floor.

"So you're just giving up? You're not even going to try? What about the drugs I'm on now? Where am I supposed to get those? You know perfectly well a primary won't prescribe the narcotics I've been taking! What about my panic attacks? Where am I supposed to get Ativan, without which I will soon be hospital-bound?"

Without looking at me even once, he launched into preaching mode, "This is a pain you are just going to have to learn to live with. You have too many things wrong with you. Your heart, your back, your various injuries, your neuro-muscular issues...all of these are sources of pain and there is nothing I can do that will make it better. We all have to live with pain. For instance right now I have a headache and my hip hurts. See how I am standing?"

"I don't give a shit about your headache or your fucking hip. Take some aspirin and go see your referring physician."  I left.

I got into my car and sat in the parking lot for about 15 minutes just weeping. I have 24 days to find a drug source or I'm up shit creek. This pain is unendurable. Even with drugs it is barely manageable. I can't just *learn to live with it* since it affects every aspect of my life. It affects how I get out of bed, how I put on clothes, how I comb my hair, what I eat and how I eat it. Goddammit I can't even take a shower since each bead of water that falls on my skin feels like a dagger.

Sheer desperation has made me consider having mastectomies, wondering if I actually cut off my screamy boobs if they'll stop being so urgently screamy. On the other hand, if it's the nerve that is damaged, the nerve will still be there, and so will the pain. I can't win.

Suddenly it all becomes clear, and I understand it completely. This my friends, is exactly how heroin addicts get made -- out of sheer desperation.

OWW MY IMAGINARY BACON

I had high hopes for the drug, Lyrica. I took it for a total of two weeks. The first week I felt pretty good. The second week I started crying. Not just crying like my eyes were leaking, but crying as in sobbing and wailing in grief. I'm still not over it.

I called Dr. Turban-wearer's office to report my symptoms. After taking a ration of shit from his secretary, my phone call was returned later that day.  She had the gall to say to me, "Well, are you a patient of Dr. Turban-wearer's? I just don't know why you would be calling here to tell me you're having symptoms." I was stunned.  I said, "No, lady. I just picked a random phone number to call out of the phone book.  YES, FOR CRYING OUT LOUD, I AM A PATIENT.  Do you have a pen in your hand? Yes? Great, write this down..."

Last night I dreamt I was eating a bacon sandwich with mayonnaise and cranberry sauce, of all things. I was crying while I was eating it. I woke up crying in actuality. This is how fuckered my brain has become in only two short weeks of Lyrica. I can't sleep worth a damn. Not sleeping is nothing new, but I certainly don't need dreams that make me cry when I finally do manage to fall into a deep enough sleep to conjure up a dream.

If you engage me in conversation, you might not get answers you're expecting. Consider this fair warning: I am not my usual "ray of sunshine" self. The fact that I can recognize that I am slightly off is a good thing, I suppose. Now, I'm just hoping it passes quickly. I don't need to be a total uber-depressed nutjob in addition to my *regular* ailments.

My next appointment with Dr. Turban-wearer is October 24, when I suppose he will move onto the next drug. I'm running out of possibilities and time both, FFS. Since the recent news of contaminated steroid shots and the resulting outbreak of meningitis, I am ever so glad I didn't jump on the shot bandwagon right away. I'm desperate, but not desperate enough for meningitis.

THE HOARD OF PAIN

Dammit, I started a gout attack yesterday. Just what I needed, another pain. Incidentally, let's talk about SCREAMY FRIGGIN PAINS...Gout is a very urgent, acute type of stabbing pain. I don't know if it's connected to the change in meds or not.  It is on the opposite side from where my previous attacks have occurred. I guess I'll find out, won't I? The only bonus in having a gout attack is that it makes my other pains seem less urgent. Yay for the brain, which has a way of addressing the most hideous pain first, and kind of shoving the other pains into the background. UGH!

It occurred to me today while watching TLC, that I have become a collector of pains-- a pain hoarder, if you will. Honest-to-goodness *stuff* hoarders will collect things and not even notice it's a problem until they are positively inundated by their items, or killed when a pile collapses on them. They rarely seek help unless until their horrible secret is discovered by loved ones, or the stench alerts authorities.  My hoard of various pains is slowly killing me, smothering me under their weight, looming over me in a great, teetering pile, affecting every aspect of my life.  Where did I put that snorkel?

2ND OPINION: OWW MY SCREAMY BOOBS

I just got back from seeing a new pain specialist, hereafter to be known as *Dr. Turban-wearer,* and I have a new plan of attack. I had been hoping for injections, but he said since my pain is neuralgic/ neuropathic in nature, injections would probably not help and might even make me worse. He gave me three new drugs to try, one of which is Lyrica.

Dr. Turban-wearer told me today that when they opened my chest and spread the ribs apart, the nerves to T5 and T6 were damaged, which certainly explains the screamy boobs and the rib pain. It does not explain the continuing sternum pain. It does not explain my screamy xiphoid process. So, I got some answers, but not all. I am supposed to call him after five consecutive days on the drugs he issued today, to say if I am better or the same. WOW, he expects a result in only 5 days.  That alone makes me a little hopeful.

He said, "I know you are in terrible pain, but I also think you are a little mad." I asked if he meant *mad* as in bat-shit crazy, or *mad* as in angry? He laughed. I admitted to both. Being in pain this long without help has made me crazy. Being in pain this long and having doctors who do nothing has certainly made me angry.

I have completely stopped taking Neurontin/Gabapentin, the drug which was responsible for turning me into a floppy rag doll. All along it had not been helping my pain, and Dr. Whackadoo's solution was to increase the doseage, which only made me more clumsy and more floppy. The last thing any myasthenic needs is additional help at being weak (the point Dr. No-Fly, the neurologist, had been trying to make from the get-go). 

I have an appointment with Dr. Whackadoo tomorrow. It will most likely be my last visit with him, unless he has received some profound revelation in the past several days, or has miraculously grown wings and stigmata since the last time I saw him.

DUELING DOCS - A TALE OF TWO TITTIES

At this very moment Dr. Whackadoo and Dr. No-Fly are duking it out over my medications. I wish I could get them in the same room and mediate.  No-Fly says Whackadoo's meds are poison. Whackadoo says I must take the crap he's prescribed AS prescribed.  I am inclined to agree with
Dr. No-Fly, unfortunately I just can't stop taking these drugs, as much as I'd like to do it.

The subject of today's battle in particular is Neurontin, aka Gabapentin, which has turned me into a rag doll.  I'm weak, short of breath with any movement, unable to walk more than 20 feet - plus...THE KNIFE IN MY CHEST IS KILLING ME.  How many times do I have to tell them that before someone hears? This drug is obviously not helping my pain. The whole reason Whackadoo exists is to treat pain. Nothing else, just pain.

Let me give you today's pain example: This morning in the bathtub, gingerly wiping *Lefty* with a soapy washrag caused me to scream and gasp for breath.  WTF?

Dr. Whackadoo is a small, scrawny man. I could easily crush him with one blow, even in my weakened state.  I think constantly about crushing Whackadoo. I think about grinding my heel into his adam's apple after he's hit the floor. Of course, this crushing and grinding does not happen until I've fastened a bulldog binder clip to each of his nipples and given them several twists, so he has a slight inkling of how my chest feels. I'd have to tie him up first because I know he'd never hold still. He's the type that would go all squirmy and piss himself in the face of any threat. That, and I can't run him down due to having the legs of a rag doll.  Well-played, Dr. Whackadoo--incapacitate the linebacker-sized woman with drugs BEFORE she does you great bodily harm. Pfft.

I can lay on my couch.  I can walk to my bathroom.  I can walk into my garage and get in the car. I can feed my dogs and let them out. If it's not boiling hot outside, I can even stand on my patio while the dogs are doing their dog things. I really can't do much else, other than watch life go on around me without being a part of it. So, if some tragic event happens to befall Dr. Whackadoo, I have a perfect alibi. Unless the Memphis PD has a Jedi Mind Trick or Voodoo Department I figure I'm safe. Oh, but a girl can dream...

Photophobia

At Whackadoo's office today I was straining my dim eyes to see what the hell he was typing into my file while trying not to be noticed at the same time.  The only word I could see--get this-- was "photophobic."  Har Har! I guess that explains the extreme vitamin D deficiency, the skin whiter than milk (I make milk look gray), and the Transitions lenses in my glasses.  Hrmph.

I have the lorazepam thing ironed out for the next 60 days, at which time I'll get a small reduction in the doseage, etc., etc., ad infinitum.

He has quadrupled one of the other drugs I take, Gabapentin, in the meantime.  Quadrupled!!!  WTF?Gabapentin is the drug responsible for my clumsiness.  Great.  Just fucking great.  I can't wait to fall so often that I just choose to lay on the floor to roll and scoot around the damned house, channelling Eddie Murphy in *Trading Places.* He actually said, "Aww come on, just TRY it. You can always stop taking it."  I rolled my photophobic eyes at him.  Bastard.  I could almost see demon horns sprouting from his forehead.

I'm going to TRY these doseages - I've got nothing to lose.  I do have a wheelchair if I need it.  It took me a long time to get out of it the last time I got REALLY sick.  I'd like to stay out of it.  I'd rather shove the Gabapentin up Whackadoo's ass, if need be, than get back in the damned chair.  I promised to badger him on the phone if it wasn't working, and I reminded him the neurologist told me to be very careful with Gabapentin.

::drums fingers on desk and dreams of some kind of fluffy, pink, girly, froo-froo drink and a menthol cigarette:: (Mind you, I don't drink or smoke.  Shit.)

Hooked on Bennies

Almost anyone with an ongoing serious illness knows that contracting an infection of some sort, will make the symptoms of the existing condition much worse.  The same is true for an extreme allergy attack. What this means for me, in my weakened state, is that a common cold can very easily kill me without the proper intervention and treatment.  Over the past month I got a double whammy.

The massive eye infections I was having turned out to be a drug reaction. During the Queen's flotilla I started with giant hives.  MISERABLE!  The first call I made was to Dr. Whackadoo regarding the hives, since   he had dispensed the most recent prescriptions I have, PLUS I know I should not just stop taking all the heart meds I take.  The orders were to stop everything and take Benedryl, so I stopped taking Whackadoo's scripts. Yes, my allergic reactions stopped, but what ensued was massive drug withdrawal.  I wound up in the ER last Wednesday, since I was certain I was dying.  I was absolutely frantic.

I had never before had a problem just stopping opiates/opioids.  The problem, by process of elimination, turned out to be lorazepam, AKA "bennies"... apparently one should never just STOP taking this drug.  I am going to have to wean off over a period of months.  I have been taking it for more than a year. Many of my so called *physical symptoms* are actually side effects of lorazepam. To my horror, I read that withdrawal from this drug can last up to a year and some are never able to successfully stop taking it. I also read that withdrawal symptoms can be life threatening, especially if the individual is not basically healthy. ::sniff::  The hospital sent me home with a script for lorazepam in a higher dose.

I was originally prescribed this drug by the cardiologist who stopped saying "You're going to be OK," quite some time ago.  I have a death sentence hanging over my head--an agonizing one.  Wound pain has returned....oh probably threefold (on a scale of 1-10 I am at 27.)  Can't take a breath without wanting to scream.  I wonder how long I can last like this? This is the first day I have been fully lucid. I am not certain lucidity is the best option.

Pain Haiku x 2

Stabbed with knife-like ribs
Every deep breath is torture
Movement agony

Desperate for relief
No treatments can touch my pain
I demand an end

Back to square one. I can think of nothing else but pain. Once again, pain is my ruler.  It sucks bad, and I can't explain it to someone who has not ever had unrelenting pain. Wondering if I should gobble some more steroids, but will be right back in the same position I'm in now as soon as I wean off again. 

I am beginning to think that either the metal in my chest needs to come out, or
my ribs are separated, or my sternum has a non-union.  The pain is exquisite, and it seems I can't get anyone to listen to me.

I am considering trolling the streets for a pain pill supply. Or at least polling everyone I see for a pain pill-prescribing doctor who is accepting patients.

Hurty Parts & Other Stuff

2 weeks of walking on a broken hip and my various pains have re-prioritized themselves.  It's really too bad I'm not a masochist, since I find my current state utterly joyless.  Actually the hip is minutely better, but the chest pain is returning with a vengeance, which I assume is from using more pressure on my arms and chest to walk in order to bear some of the weight my legs would normally take.  See pain doc on the 23rd.  Can't wait to berate him. He needs it, dammit...friggin joke for a pain doctor.  "Oh, you broke your hip? Here, have some Advil."  Asshole.

I am going to attempt to walk just a little farther every day.  I can pretty much walk around the house without the walker, but I need it for any distance at all.  I cannot just lay on this stupid couch and rot.  It's killing me.  Literally.

I'll be really glad when I can start using the Rue harness. The harness making woman said it takes about a month to complete. I can understand that because it's entirely handmade to individual measurements out of latigo leather, (Yeah, like a Leather Woman would order something OTHER than a leather harness?) with a sheepskin lining and stainless hardware. They look like this with subtle variations depending on specific needs:

It beats the hell out of a stupid rollator or being stuck in a damned electric wheelchair or scooter, not to mention it forces me to get out of the house.

I bought a head lamp for my head - a little led flashlight that's stuck on a headband, so I can take Rue out walking at night.  There are no streetlamps on my street, so unless I just want to walk her back and forth in my driveway only, I  need some kind of light, and obviously I wouldn't have a free hand to hold a flashlight.  I'm wondering if I should also get a bicycle reflector to glue or clip onto the back of the headband.

I NEED to start taking Rue out into public places - I can do that now that she has her ID. She hasn't had much experience in crowds, other than at dog class and inside PetSmart -- and there she wants to bark bark bark bark bark at every dog she sees.  Need to correct that, definitely.  I also need to get her into the mall where she can learn to ride the escalators and elevators, as well as how to act in a crowd.

I have a metric butt-ton of stuff to do and having the hip setback didn't help a bit.  Grrrr.  Prime example of Murphy's Law.  I'm telling you, I'm the Murphy poster girl.

Meanwhile back at the ranch, still eating steroids, still RAVENOUS, and still can't get my blood sugar any lower than 140s.  I should probably be more worried about that than I am, however... I gotta eat with my stupid meds, and I feel like I'm starved all day long.  Not just hungry -- STARVED.  Meh.  Also, the crap that I am actually allowed to eat just doesn't satisfy me in the least. 

The oddest thing is I really have no interest in food at all....I don't want anything in particular, nothing really jumps out at me on a menu - everything is just blah and ashy tasting, and if I think about it too hard before swallowing, I'll have to spit it out or gag, because if I'm thinking about it, it's already too late.  This belongs in the strange but true files, I guess:  "Ravenous Woman is Disgusted by Food."  WTH?

2 Steps Back

I swear my last name should be Murphy.  My entire genetic line should belong to the Murphy family.  I'm talking about the Murphy's Law people - if something possibly can go wrong, it will.  It has been just one fubar after the other for me, all week long. 

I've felt kinda down the past couple days.  I thought a haircut might help.  It didn't, it just made me look more like Beethoven.  I have vowed that it will be my last haircut.  I am tired of screwing with hair - I never should have gotten it cut in the first place.  It WANTS to be long and straight and I have decided to let it be long and straight.  No more fighting it.  It will be happier and I will be less stressed.

I started playing my guitar again today after a long absence.  My hands are very slow, and I can't remember even one entire song.  This might be part of pumphead syndrome, but in any case, my illness has stolen my music from me. I used to have a footlocker full of sheet music, but no telling where that might be or if it even exists anymore.

I can barely handle the 12-string.  I have a 6-string acoustic that actually has a bullet hole in it...don't ask.  The damned thing won't stay tuned, even for one song.  I think it needs new tuners at the very least.  Anyway, I'm toying with the idea of getting another 6 string.  Since the one I have is basically unplayable, and would probably cost just as much to fix as the cost of a new/gently used guitar. 

I also need to get back to my toy-making, but that takes a little more concentration than I have available right now.

The whole point of this is stress relief. I could be out walking/training my Rue dog, but since I have a broken ass, I've been trying to move as little as possible. I still have pain issues - it's just that the pains have given themselves different priorities now. God forbid somebody should give me a fucking pain pill.  I see the pain guy on the 23rd.  Maybe he'll take pity on my broken, swollen ass, but probably not....I'm a Murphy underneath it all.

Living Hurts

Breathing hurts
reclining hurts
walking hurts
standing hurts
taking a shower hurts
coughing, sneezing and hiccoughing hurts
Living hurts

When I was a little girl they told us in school to offer up our suffering for the poor souls in Purgatory.  Purgatory was a real place at that time - like Hell, only not forever...sort of like a prison for sinners. Sinners had a chance to get out of Purgatory.  If people on earth prayed for their souls or had masses said for them, of offered up some of their "earthly suffering" it could literally BUY a soul out of Purgatory and then the soul would get to go to heaven.

At some point, I don't know when, the Catholic Church did away with Purgatory and Limbo. (Limbo was an afterlife place for the unbaptized.)When they did this, they rendered suffering absolutely useless.  There is no longer any reason at all to suffer, and yet suffering still persists.

I want to call in all my suffering chips. Oh, and I suffered plenty over my relatively short lifetime, so I should have a huge pile of suffering chips amassed somewhere.   Can't I trade in a few of them?  Just a few?