Two Pages from my Art Journal: pain and mess are facts of my life

Piriformis, the muscle you never heard of, can be a real pain in the butt...literally, but at least the problem is neuromuscular, and not in the bones. It turns out to be related to all the forced Haldol injections they gave me at Yale, and something as well to do with this deep piriformis muscle and the sciatic nerve...Dont understand it all, but it all adds up to a huge amount of excruciating Pain with a capital P!
Piriformis, the muscle you never heard of, can be a real pain in the butt…literally, but at least the problem is neuromuscular, and not in the bones. It turns out to be related to all the forced Haldol injections they gave me at Yale, and something as well to do with this deep piriformis muscle and the sciatic nerve…Dont understand it all, but it all adds up to a huge amount of excruciating Pain with a capital P!

I ended up at the local non-hartford ER on Monday/Tuesday morning, in the very wee hours, in so much exquisite agony i could not move off the chair i sleep on.

 

What do you expect? I sleep in the same chair i eat and read and draw in mostly...and now i am imprisioned in it in pain, why shouldnt i live in filth?  It isnt actually the dirt or not that bothers me, but the constant chaos...i would prefer orderliness, but cannot keep things in any state resembling it, so chaos reigns!  I do not worship the great god Chaos, but no one could guess that from the constant state of affairs chez moi...the drawing i did in my journal doesnt even begin to depict the truth. In fact, i dont know how to do so. It is incredibly difficult to draw the mess and chaos and disorganization of my room. One must define something toi draw it, so by necessity you bring an order to the room in culling it of unnecessaries that it does not have in the realness of my unbeautified life. Pretty as a picture my room is not!
What do you expect? I sleep in the same chair i eat and read and draw in mostly…and now i am imprisoned in it in pain, why shouldnt i live in filth? It isnt actually the dirt or not that bothers me, but the constant chaos…i would prefer orderliness, but cannot keep things in any state resembling it, so chaos reigns! I do not worship the great god Chaos, but no one could guess that from the constant state of affairs chez moi…the drawing i did in my journal doesnt even begin to depict the truth. In fact, i dont know how to do so. It is incredibly difficult to draw the mess and chaos and disorganization of my room. One must define something to draw it, so by necessity you bring an order to the room in culling it of unnecessaries that it does not have in the realness of my unbeautified life. Pretty as a picture my room is not!

 

One thing you notice in this definitely unprofessional picture is the presence of a single crutch. I hated being at the ER but if I hadn’t called 911 (after pulling my emergency cord and wondering if anyone would ever come to my door…and finding out that someone had actually called 911 for me after the loud buzzer over my door had sounded for at least 1/2 hour…). When I hear someone’s emergency buzzer, I always knock and try to go to the person, find out if I can help them in any way. i dunno who called 911, but why they couldn’t at least let me know they were doing so I dunno. i felt so alone all night, and then at the ER. it was almost worse, because of course I  was treated like an hysterical psychiatric patient largely, and ignored. Truth to tell, my hip pain was not going to kill me, and apparently the testicular pain of the young man in the other part of the cubicle, could have killed him (so says Dr C, but according to her it would kill via “shock” so she means because of the degree of pain…So I am skeptical. I think the reason he was getting so much attention was because “Everyone knows” that testicle pain is horrendously awful and  shockingly painful…”everyone” because of course MEN have experineced it and let us all know how bad it is. Women have experienced childbirth tearing them literally apart for eons but no one goes on and on about how that pain needs to be attended to at all costs. No we just let them scream…SO, ditto me versus the young man with a testicle that did not apparentlhy need surgery but who was, I admit, the subject of a sadistic surgeon’s ministrations, and manipulations, even as the man denied that the young man needed his help. I mean, why stand there, holding a guy’s twisted ball in your hand, manipulating it in such a fashion that you kmow you are causing breathtaking agony, everyone who hears the sucked-in choked-off breaths of the patient knows it, why do that, what are you odoing? when you then in the next breath announce that this testicle is FINE, nothing that needs YOUR attention as a surgeon, in fact, you cannot understand why it is still causing the man so much apparent pain. But it is…The young man is nearly comatose with pain, and the surgeon doesnt’ even apologize. Only says, Well, you are fine, nothing here that needs me. I will check in with you later, but you are not a surgical candidate as far as I am concerned so you are none of my business.

 

But what I was saying was, sympathetic as I may have been with respects to the  doctor’s sadism and disregard for all human feeeling. Nevertheless, it was apparent that the entire ER had sympathy for testicle pain, and youth, little to none for hip agony in a 60 year old bag of a woman with scars on her legs and arms and face…It was a matter of appearance and what and who was appealing, and I was nothing of the sort. Who did they want to root for or give a damn about? I was just a title 19 patient with nothing to offer, and since I had brought nothing but a key to get back into my aprt with  me, I could not prove otherwise. Could I? Nothing to tell them I was worth anything but scorn and disgust, which they gave freely.

 

I knew in the end, that is., after 12 hours and very little had been done past a CT scan that showed piriformis inflammation, that I had to prove that I could function well enough to be discharged from the ER. I knew it would involved exquisite agony but it had to be done or they would keep me in the hospital because they would claim I could not function independently. SOMEHOW I had to prove I could get my own jeans back on, and dress myself. I knew that if I could do that they could not keep me, and I was desperate not to have to stay there any longer than I had to…which meant in practice that I wanted to leave ASAP.

It cost me more pain that I can ever express. I literally had to suck in my breath and flrce myself to “break my own hip” or feel as if I were doing so” in order to put my leg inside the pants and then manage to pull them up and zip the zipper. But I did it. SOmehow I did it. It felt as if I were literally stabbing myself in the abdomen each time I forced myself to do any abrupt movement like putting my right foot into the pants leg and pulling them up. But it would do not good to go slowly. A slow agony would never do and would only prolong something I could never tolerate. So I did the “white hot poker routine” of forcing myself to make abrupt changes in position and get things over with. And I managed to get dressed and eventually I was discharged and my dear friend Josephine agreed to come pick me up after she was through with her last housecleaning job, which was just then…

 

But where am I going with all this? Piriformis Syndrome, you can look that up. It is all very mysterious and not very common. But curable or at least temporary usually and treatable. So I am not dying and not even very ill, though the pain is mentionable! All I have been writing about, basically, is the pain, the dismissive attitude, and this, what finally transpired: I saw my doctor’s office’s APRN, Sara, who is very wonderful and while young doesn’t make me feel old and despised. She put me on a difficult drug to take but one that promises quick pain relief, if I can tolerate it: prednisone. And Soma for a muscle relaxant, which may or may not work. I will start the former tomorrow morning and try the latter as soon as I finish this blog post and can justify inducing sleepiness. She did not minimize anything, and I felt taken at my word and seriously. Neither as if things were being exaggerated for my benefit nor dismissed for the same reason.

 

I apologize that this blog post has been so boring. I am halfblind with sleepiness, because i have been up since 2:30AM, one, and two, the hospital lost my two pairs of glasses with prisms in them so I am using glasses that do not prevent double vision at the moment. Trying simply to see the screen and the keyboard is an effort that defeats me more often than not. You can imagine the effort to be eloquent or anything else is beyond the beyond.

 

But mostly I think I am just plain overtired, which makes it triply difficult to focus my eyes on any one object, let only make doubled images fuse into a single image. So I will stop for now. Take the Soma and go to bed. Thanks for your forebearance. If I promised an email to anyone, I will try to get to to. Remind me if you want to. I meet with my siblings Martha and Philip tomorrow so I may be busy for ao while but I hope to be in less pain and more able to get back to people who have written me about things.

 

Ciao! Cheers! Shalom!

6 thoughts on “Two Pages from my Art Journal: pain and mess are facts of my life”

  1. Donna, i think it was obvious to everyone there that it was in reaction to being given im haldol…now why i defecated on the floor and smeared the shit rather than simply — i dunno! I simply had no other way to react. At the time. At the time. Remember these are acute episodes and i am not always the way i am during them…

    Yes, when i hear voices telling me to burn myself, the consequences of not doing so feel so overwhelmingly worse than anything i can imagine that i virtually always listen and do what they tell me to do….sorry, but that is just how it is. I am sorry if you do not understand. Many people do not. But i can’t take it when they start telling me what to do and how id better do it or else….

    But if you read todays blog, i am going to have to tough my way through even those if they come back, because i am not going to resort to meds ever again. I don’t believe in them, nor that they ever did me any more help than they harmed me…

    Pam

    Pamela Spiro Wagner: Artist, poet, author of Divided Minds: Twin Sisters and their Journey through Schizophrenia (St Martins Press, 2005) and We Mad Climb Shaky Ladders (CavanKerry Press, 2009). Available for readings, speaking on mental health issues, and sales/donations of her art. Please contact for details by email or skype phone: 860-263-0280 Check out http://pamelaspirowagner.com for links to Wagner’s art and poetry. Her art site for now is https://pamwagg.see.me

  2. I have rethought my comment of Aug 28. I was in a bad mood that day, I guess. But I honestly don’t understand why you do stuff like defecating on the floor and smearing it on the walls. If you are bat-shit crazy, yes, perhaps. But I don’t think you are. Do you have command hallucinations that tell you do do these things? It is just out of boredom? Rebellion? I remember when you set your leg on fire. Can you explain to me why you did that? Could you honestly not stop yourself, because it must have hurt like hell. (Literally like hell.) There have been times when I did things to cause myself physical pain and bodily hurt. There have been times when I was in the hospital and vandalized hospital property. I wanted attention, even “negative attention.” What did you want?

  3. Hi Lauren, I see that you have commented via a post, so I did not need to tell you how to do that via Facebook just now!!! 8)

    Anyhow, until anyone really can define “schizophrenia” and tell me what it really is, I do not see how a diet could help me…OTOH, maybe that is why a personally tailored (or is it taylored? argh, ever since neurological LYme disease I have not been the “champeen” speller I once was…! AH! now I see that YOU spelled it “tailor” so I feel more secure, and trust my first impulse. THANK YOU! Phew!) Maybe a personally tailored diet would be a better approach. Diets are usually crazy — full of sugar and processed foods, so changes are often radical and can make huge differences. THe reason I resist is that for most of my life, really for all of it, since I became a vegetarian at age 16 and even before it my mother (who in her old age and since my father died eats like a child, sugar, fat and junk junk junk…) NEVER let us eat anything that wasn’t good fresh food, no candy, no junk. Not even at Halloween, really, since we were seriously rationed on the candy we got and I early switched to UNICEF collecting. I did a NO GRAINS diet, including no gluten, for two months recently, but when I went back to grains found no difference in how I felt, frankly. (My brother maintains that you have to go NO grain or no Gluten for a year to really make a difference…Is this true?) So UNLESS the reversal back to eating grains had a direct influence on my (subsequent but not necessary as a result) relapse and hospitalization, I see no reason to do that again. Otherwise, my diet is and always has been (but for my Zyprexa days, and even then, except for the addition of more food and meat) PDG. I NEVER eat junk food, and rarely eat anything processed more than whole whole grains bread. And even then my favorite bread is the kind that is made from “rye seeds, soaked, fermented” and nothing else. I do eat dairy, yes, esp yogurt. and mainly in the forms of yogurt and cheese, so that might be one questionable item, given the way we treat our cows and what we feed them…ABs and hormones etc. I do not have the money to always be careful about where my products come from either. But for the most part, except for whole grains and dairy products, I stick to almond milks, occasional soy products and fresh fruits and veggies (no not always organic either…). But you see my point. I do not have a perfect diet, no, and maybe some careful nutritionist would have a way I do not know about to detect some problems with SOMETHING i do eat that could cause a problem I didn’t understand…But by and large, I eat pretty damn decently compared to the average American PWSz (person with Schizophrenia) and it doesn’t seem on the surface that it would be the biggest source of my problems…I think Celiac gluten sensitivty is the newest fad in any event, and unless proven real in my individual case — I would be a hard sell — I would refuse to accept it simply because I feel it is a fad and like all American fads does more harm than good. (Gluten-free foods costing more, being higher in calorie, and dietarily NOT better for you, mucch much lower/higher in glycemic index than anyone should want bread to be…whichever way it should not be, I forget). DOnt get me started on Vitamins, as I am even more opposed to overuse of Vitamins in the American public than anything. (I think touting the great use of OMerga 3 FISH oils is hte worse thnig anyone could have done to the OCEAN. Now we are overfishing the worlds small coldwater fish, after having overfished to extinction all the big warm water fish. We could get our OMega 3s from FLAX, but no everyone wants to eat and take fish in pill form now…and we have a DYING ocean as a result… Sorry, I love your comment. AND even as I wrote it I was rethinking the diet advice. And my response!!!!! Now I am thinking that a personalized look at even MY diet might be a very good thing. TY!

  4. Instead of medication, how about finding a nutritionist who can tailor a diet to your symptoms? How about vitamin therapy? I agree that you need to speak to a health care professional who can provide you with the compassionate care that you deserve instead of scolding, blaming, or humiliating you. You are a very special, talented lady and you need to take charge and insist on getting the care you need along with the respect that you deserve!

  5. Hospitals never have a “right” to abuse anyone, no matter what their philosophy…I am sorry, but that should be obvious. Abuse is abuse, inpatient or out. I have taken emergency Zyprexa and tried to get a handle on things before winding up in the hospital, but I do not believe that I need medication at all, I believe I need kindness and a soft place to land. and somehwere that will keep me safe and NOT respond with abuse of its own, PERIOD. I believe in Open Dialogue and letting the psychotic person process what they are going through and find a way through it and out the other side. I do NOT believe that meds are the only or even the best way to deal with psychosis. In fact, I believe that medications may only complicate and lengthen the psychotic process and ultimately may contribute to long term disability…

  6. Q. Pam, I’m sure someone has asked you this before: if there is a medication that will keep you out of the hospital (like Zyprexa), why don’t you take it? Or do you? Obviously, you find psychiatric hospitals very objectionable. So do I. So I take enough medication to keep me out. Are you just unable to find a medication that will do this? No one should have to take medication if they don’t want to, but if there are meds that “work” for you, do you have a right to complain about hospitalization/treatment?

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