I went to the ER because I have heart, lots of heart. In fact the problem was the imminent eruption with bits of my heart over here, and some over there, and a bit on the monitor. The high blood pressure wasn’t helping.
One ER male doctor, Dr. GungHo, was a combat action junkie and charged everywhere. He was shouting out stuff: central lines into me, IV’s, blood draws, more blood work and an in and out (you don’t want to know that unless you like catheters so much you want to have straw stuck into your bladder).
I had waited a bit, you know how things are, so much to do before dying. But after three and a half days and all the heart pills I could take without flatlining, it was time. E.R. we go! The downside of delay is that I had this red haze in the brain and eyes, I couldn’t speak clearly. This made a comedy of ‘Who’s on first’ with Linda giving me ‘break pack’ of emergency ice in the wait room as I tried to explain having a “HEART attack!”. Which must have come out like “‘eak ‘ack”, another time, falling OFF the ER bed they transferred me to, I asked her to ‘Raise the bed arm.’ As I was about to fall over.
“You have a bad arm?” Linda asked, as I leaned closer toward a 4 foot drop and face plant.
“Hospital bed, raise arm of hospital bed!” I tried to speak slow and clearly.
“Raise your arm above your head?” Linda asked with a puzzled look, but started doing that, and eventually raised my arm above my head, while I finally fell over and indicated what I wanted by knocking the side of my head against the lowered hospital bed arm.
‘RAISE, please!”
“Freeze? You need a blanket?”
I groaned in agony and tried other words, “LIFT!” “UP!” and she got it and got me into the bed. Just in time for Dr. Gungo to get his adrenaline fix for the day by charging my bed with two RN and someone who just ran off to do what he shouted.
I tried to let the person in front of me in the lounge in first. I mean, he had a bag hanging out of him with blood coming down the tube. Which is a bad sign in my book. I tried to say, ‘take him’ except I could only see out of one eye and couldn’t spot him. Plus my speech was interrupted by groans as y heart was at 70% erratic by this time, and I wasn’t breathing but coughing and choking, sometimes not breathing at all.
Dr. GungHo was at the end of the bed yelling, “When’s the last time you coughed up blood?” I was showing the blood that came from my nose and ears, but he was obsessed and then when I got him to understand it was just food and phlegm as I aspirate, he started yelling for chest x-rays. I tried to explain about the needle phobia, but with four people in the curtain and Dr. GungHom who was trying to hold me down, thusting his face forward almost into mine and telling me he didn’t give a damn out my needle phobia. I kept thinking, “Uppercut or choke the trach?”
But the RN female, RN Busy, was on my left distracting me from levelling Dr. Gungho, as she was saying, “No, I don’t have a needle” while she had the rubber arm wrap and a LONG, THICK main line needle in a sterile holder in her hand. I kept pointing to the one good vein (right arm elbow) but Dr. GungHo was shouting, ‘Put it straight into the hand!” with that 'no time, no time!' tone.
Oh God! A little too much drama.
I tried to say how, I bleed out, the hand veins spontaneously bleed, and are not strong enough to hold a main line. But that was too much so I said, “Needle phobia, PHOBIA: Needle here, Beth go away, I scared hit you.”
This must have got through as she told me she would hit me too as she took kick boxing.
“Y?” I asked, meaning the woman who taught kickboxing for women there. She was surprised but said yes, we bonded, almost decided to bout a little then she decided that my right elbow was the only vein strong enough. Dr. Gungo kept shouting orders and swept out of the curtain area to go get a x-ray machine or something. I asked RN Busy what was up with him. She did an eye roll with "Men. Hurry, Hurry."
Dr. Gungho rushed back, to find out why I wasn't already with an IV in me, and a main line and some blood work and 'push'. He was up in my face and trying to hold me down, while RN Busy kept saying, "I'm not doing anything" while getting the area prepped for a needle. Since they were on either side, I kept doing wrist turns to free my hands and arms from Dr. GungHo, trying not to punch his head several times in a second, as he wouldn’t let me finish a single sentence. The RN was deflected by Linda and during all this the monitor kept making these ‘look at me!’ loud beeps. It did this when I stopped breathing, or flatlined for more than 10 seconds, and I looked over to see waves of erratics with my heart rate over 150 bpm resting (well, not restful), both the lower and upper chambers were erratic.
Linda looked over and saw what we call ‘the jackpot’ when they all come up the same and was saying to herself, "Oh shit, oh shit". Heartrate 145, systolic 145 and diastolic 141. They will say you can’t have the systolic and diastolic that close, but it happens with autonomic failure. My systolic was up at 190’s for a while, which is nose bleed, brain bleed time. I guess it was good to be at the ER after all.
RN Busy was about ready and I said, "Butterfly insert, we have a protocol." And she just gave me 'the gaze'. I said, "At least tell me it will be a small needle." in a pleading, 'just lie to me' voice.
"Well, it won't be as large a needle as it COULD be." She said with an odd glee.
Oh vey, trauma ahead.
When I was brought in, they wheeled me to the wheelchair transfer bed but once I was fully transfered someone realized the heart monitor there was broken. There was much swearing. I was at the edge of the ER room and the intake room, where I sat/lay with my top off, and six main heart monitor 1 inch square leads, along with a dozen thin leads, all leading off to a monitor they hurriedly rolled in. Dr. Gung Ho’s assistant grabbed my oxygen concentrator, and ripped our air canula off in order to reach the intake in the next bay (Geez, are cut backs so bad they steal medical supplies from patients?)
By this time, due to the heat, I looked all over like I was a goth let out in the sun for the first time, bright red burn looking on my arms, my face, and my upper chest. The couldn’t seem to get the ‘can’t sweat’ so Linda broke another break pack and whapped it into my groin. Uh….thanks?
The pain in my chest was crabs with razor claws, demon machine crabs hacking me up from the inside. Bad Demon crabs! And it hurt to breathe. Oh, maybe if they killed the demon crabs, the needle wouldn't be that bad. No, it would be bad, both were bad.
Suddenly Dr. Gungho and most people got yanked as Dr. Cool came in, with my chart. 
Dr. Cool was not in a panic, nor was he yelling out everything for the ER to hear. He had been going over the notes on my disease and realized that it was not a structure problem, but an electrical problem. He gave me morphine and ativan and the RN Busy, who was yanked was telling the other RN on the other side of the curtain that I was a word that meant both agitated and mentally out there. This pissed off Linda, who was right there. Dr. Gungho later read the chart and apologized to her (or rather he apologized about the way he had treated me, but not saying sorry to me, but Linda).
Dr. Cool had three hopes: 1) medical intervention with drugs (he gave me the morphine to take the edge off the pain so I could talk) 2) IV, and being admitted to figure out later or 3) a chest charge and then start again. A chest charge is when they use the things they zap people with who have died, or flatlined, only I get it while awake. Personally, with the erratic and flattening I was presenting, and the exhaustion, I didn’t think I could hold the charge. Which means the charge would make my heart stop entirely. So this was not a first option for me but a last.
I could, now with the morphine, speak and be understood. Dr. Cool said he would try a non-invasive approach and gave me a different type of beta blockers, not the maximum but combined with what I had taken about triple my dose. He told me that these beta blockers were the ones preferred by pro golfers. I checked and he is right, golfers use them to stop the shaking from adrenaline while putting, as do expert musicians to calm the nerves that might affect performance.
He gave them, not much happened, Nurse Busy came back and I was now able to talk to her and explain how my hands spontaneously bleed, so that was a bad choice for and IV. She kinda freaked about that, which surprised me as it is common in seniors toward the end of life. She kept saying, “Yes,” and “oh right” when I talked about not sweating but put me down as ‘agitated and flushed, with skin dry’ on the chart. I asked her later and she said, “Oh, I just kept saying ‘Yes’ to talking while I do my assessment of patients, it lets me do my job in peace.” - great. She is the kind of RN I hate, as they don’t listen, don’t care, and don’t value any info the person might have.
Dr. Gungho was the same, and treated the patients like they were junk information compared to his all knowing eye. As I was leaving indicated it was the not the beta blockers that fixed me, but the anti-anxiety aspects of them (Linda declared him: asshat!)
Dr. Cool was not only professional, but also, patient as my heart finally, after two hours accepted the new drugs, and stopped the erratics.
“What happens in six hours?” I wanted to know. Or what happens when I don’t have these drugs.
He thought the heart erratics were a flare up, but I should see my GP. Or maybe he couldn't do anything else now they were gone, and either be admitted full time to the hospital or hope for the best. Problem was they ‘flared’ for three days and a half, and since then, I have had over 25% erratics on all of my heart monitor readings (taken several times a day). And my GP is gone until May 5th, Linda says. "But did you want to stay in the hospital?" She asked.
"Hell no."
She says the GP appointment is a long time away, but next week, she will get a boost of medication from the locum.
Dr. Cool was happy that he did it without needles, though I knew coming down that an insulin test and bloodwork was likely. I was happy too. And what was best, was Dr. Cool did it all from the first with all the shouting and background noise with a high tech hearing aid in both ears. Yes, he was hearing impaired, and a better doctor. Maybe it was the lip reading that helped him understand me better, that and the morphine allowing me whole words without groaning.
Nurse Easy came in and was there to give me my ‘in and out’ to get a ‘pure sample’ of urine from my bladder. I asked her if she had gotten one (the 'in and out' catheter). She said she had ‘many times’.
Really?
I asked why exactly, if she didn’t mind telling me (was this a medical or sex thing?). She didn’t understand why it was strange. I said, that anyone who can feel down there and puts that in a lot must have SOME reason, with a raised eyebrow look.
Oh, no she had DONE it to OTHERS many times. Oh, not so great.
After leaving I told Linda, ‘If I had know my vaga was going to be on display for most of the ER staff and walk-by’s, I definitely would have done a clean before leaving the house.” She nodded in agreement. This was not the time any woman would want to have a few bits of wet cheap TP stuck here and there. Due to our Toilet paper scrounging, I had been using the ‘touch wet and half dissolve’ horrid stuff they seem to stock in public restrooms – the ‘half ply’ TP.
I was wheeled out by Linda, covered in medical litter. Linda who falls in the ‘loves to rip band-aids off of others’ camp of the world (sadism my dear, a touch?), got to play ‘strip, hunt and rip’ with the 18 different pieces of bonding leads they had on me once we got home.
At home Linda helped me change into a sports bra then it was up at boxing. There I explained my exercise strategy to the new coach filling in while Ian is gone. It is based on the old Willie Wonka and the Chocolate Factory. There is that girl who gets purple in the face and blows up because she eats the ‘not quite perfected’ everlasting gobstopper. The Coach knew exactly what I meant, he remembered the film well. I said, “I have double mats, and get rolled from push ups to sit up, until my face looks like that level of red/purple” – I did 85 pushups and 135 sit-up, including an additional 20 push ups with my knees above me, on the wheelchair and 30 sit ups with my legs to my knees in the chair, while I lay on the mats. I was trying to sit up, kiss my knees and hold it.
As the coach said, “You get the most extreme core workout of anyone.” Then onto the heavy bags where I did six punch combos at speed, after warming up with 100 jab/cross combos as a southpaw, and 100 as a righty. Then working with my partner, speed and heavy combos until the sweat dripped off, and my hospital tag was whizzing round my wrist.
As strange as this may be to understand, I do what I need to in order to survive, so I can ‘live’ and reach a place where I can dream again, hope again – which isn’t now.
I had waited three days because I hoped the erratics were temporary, but the pain kept getting worse. Then, each day, I needed to go to ER but wanted to get 'just this meeting' done, or 'just that' done. Once I decided it HAD to be, I still waited until Linda woke so that I could get a ride to the ER, with her assistance, in a cab using transport saver coupons I bought two years ago. That way she could stay at home and do the job application. She took me to the E.R. instead, and I had my emergency ER coins for either the cab tip or the parking meters (we used them all on this trip). A ride in the Ambulance would have saved me 40 minutes in filling forms and transport but we would have been billed $60-85. And we didn’t have $60-85.
I wheeled up to boxing because if I don’t sweat and push the blood around I go downhill quickly. The high blood pressure and heart beat of exercising draws the blood from the edema in my legs, and pushing it into the capillaries. After a month without it, my arms and hands are pale to transparent, I am unable to be in any temperature change without passing out (like the ER for example, I was able to stand the warm because I go boxing), and I start bleeding from sores opening up from the Edema.
My tripling my heart meds shows a recorded degeneration of the central autonomic system. I hope they can use that to get me a pace maker or some permanent electrical solution. Yes, exercising after the ER is a risk, waiting to go to the ER is a risk, but without the security of funds, and now, at the tail end of this disease there is nothing left but risks. And I try to make the smart ones that will keep me going as many weeks or months as I can. (oh, and Linda submitted her applications on time that day, as well as the applications due the next day as well)
I hope this weekend to be able to get out to the French Food Festival, but also do a few postcards to all the friends who have been helping me feel not completely alone. It really helps. And I hope you have a great time. Let me know what you are up to, or share some ER story, and I will try to reply to every person. I do all I can, and when I don’t, that happens when I am physically unable to get to the computer. You’re my friends, why wouldn’t I want to share this with y’all.
Pssst!: We took several rolls of the heart monitors showing the erratics with us so we can show the doctor and heart specialist. And I took pictures post boxing of Edema gone bye-bye and later this week, pictures of ‘bloated goat foot’ as a compare contrast, just like show and tell in first grade!
What do I want for Xmas? Why world peace and free painkillers for all in need of course.
I’m serious, since the doctor has altered and increased my dosage for the 3rd time in two months, we are in fiscal fear. I am having an last ebay auction of manga here, sets complete and rare, some yaoi and some stuff I have been holding onto like signed books, and cult sets that cost a couple hundred to buy they are so out of print. It ends Sunday so the manga can be posted and received before Xmas. Money is used for 1) Rent, 2) Medicine, 3) Drugs, then if there is some left, a night’s room in Seattle to go to Sakura-con. But will see. No more ebay sales until at least March or April if I am able.
I gave blood a couple days ago. The bad news is every single vein blew (the vein walls are weak), making all these nice round blood eruptions dotting all over the inside of my elbow giving me the drug addict look from 60 yards away.
You can see how the branches of veins from the injection site, a wall blew on the vein, to the left, the right, below and above the injection. After the spurt which caused the 'needle injection infection' look, you can see the yellow of pooled blood under the skin. I told Linda I was coming in to the study to inject my next 'fix' into my eyeball or between my toes since right now all my arms are blown. That was a joke (the drugs part). What is more worrisome is where are they going to get blood next time? My other arm does not have a strong vein. Guess stuff changed in the months since the last blood tests.
I had some medical reactions from drug combos which had caused me to sleep and only be awake about eight hours a day. Now I am slowly getting better but the cell degeneration in my body is worse, as is the crazy Edema. I went to the doctors, and he asked me to take off my shoes and socks. Linda helped and there was one foot so large that it was like a soccer ball on the end of my leg, and my ankle couldn’t bend but the other foot was perfectly normal.
“Did I mention how each side of my body has separate circulation?” I said as the neurologist looked and then started taking blood pressure readings from both arms. Scientific method, I like that. Except my exposed feet had totally black toes in 10 minutes, like the black you see on climbers up on Mt. Everest for days. BLACK.
“Um…yes….um…” the doctor said staring at them before asking me to “cover them up.”
Then he checked my heart beat by using his hand to move my bra aside and nestling his hand around my breast with the listening device right by my nipple. This was an unusual place to hear my heart, but must have given him some added advantage because he pushed the bra aside to get his hand on the breast, I mean, listen to my heart four times in all. VERY rigorous exam.
He wanted to know what I write about, and he talked about migraine research. I mentioned how orgasms are one of the top ways to reduce a migraine for females. Which which is why, with Xmas rush, and relatives, and all the pressure, the tension builds and honestly, frequent masturbation will keep you from frizzing out, or help.
"Masturbation!" He was outraged, "A waste of an woman's orgasm (with me around!), you know! Heh...heh!" No I didn't since he was (even Linda agrees) clearly over 70. Oh God, time to check my heart rate AGAIN? I didn't know my breast was so good at conducting sound since he had to move the scope to many different spots.
The good news is I didn’t need to stay in hospital and he is taking the case, plus he is friends with Dr. Sacks (of the guy who writes the book, and the movie Awakening is based on), so he likes the unusual cases and is going to see if he can find anything on mine.
The bad news is there is no way to get IVIG in BC. This is because a guy with a name like Barry or Larry controls who gets IVIG for the whole province and his ego is somehow tied in to making sure no one gets any. I had heard another neurologist say, “Barry would never approve it.” but didn’t know what he was talking about. Apparently much like censorship or rating film boards, Barry only likes to give IVIG to the candidates he was taught to give it to, about 15 years ago. Now, it is regularly given for autoimmune diseases including Lupus and Neuropathy and helps people keep working and just stops the progression – the wonder drug. I hear from a neurologist that one guy has neuropathy so bad that they are completely paralyzed and only his eyes can move, but Barry still won't approve the IVIG.
This idea depresses the neurologist so he goes back to my breast. I try to cheer him up by telling him that the neuropathy is affecting one eye, much like the circulation issue. This perks him up and he plays with the light in the eyes thing watching one move slower than the other.
I leave there and give the peds blood station the hello kitty band-aids I got when I ordered gifts from Japan. 
I seem addicted to ordering gifts only to realize that I don’t have anyone anymore to give them to. Which kinda sucks when I have Hello Kitty with her friend saying, “I love mushrooms” inside a giant mushroom as stationery (seriously, what is not to love about that irony!). Last time I gave all the Hello Kitty and Anime stationery to an orphanage. Oddly, most of the stuff I get goes up in price until it is stupid price valuable, but I’d rather give it away than sell it. I have several boxes of gifts to give away, including a puzzle for a space/shuttle affectiano but it sits waiting.
Peds love the band-aids and so next time I will bring in the Hello Kitty cold masks I have ordered for them also from Japan.
So next time we can afford gas/petrol to drive to the hospital I am taking them, and they are really looking forward to them. Peds nurses are cool.
I end up missing my meds because I didn’t want to drink or take meds before the blood tests or neuro tests, so I miss three of the four heart pills. The delay in taking Lyrica for nerve and seizure disorders ends up with me having several seizures, which make me a bit ropa-dope. So later, very confused, and also with blue fingers, my Lifeline phone tells me “It is TIME to press your life line!” I do, and fail. And fail. I simply don’t have enough strength to press the button. The button is recessed so I am not able to push it down with my teeth. But I finally hit it.
“This is life line…do you have chest pain?”
Me (post seizure and brain of swiss cheese): “Yeah, I do, how did you know that? Is that why I had to call you?”
Lifeline: “Ms McClung, are you okay?”
Beth: “Probably not, I mean, do ‘okay’ people have their phones talk to them? Oh wait, look at that, my elbow is purple, that’s kinda odd.”
Lifeline: “Are you sweating?”
Me: “No, I don’t sweat, it is part of my ‘thing’”
Lifeline: “Are you clammy?”
Me: “Still don’t sweat. I do change different colors, kind of like those mood setting lamps they have in offices to sooth you.”
Lifeline: “I think you are in distress, do you want an ambulance?”
Me: “I don’t know. How do I know that? Didn’t you just ask the questions to figure that out?”
Linda takes the phone, after they keep asking me different questions and I am confused and it is 4 am and I keep saying, “I don’t KNOW.” Which is the truth, at this point, I don’t know if I am in South America, or if I am that assassin who slices off my marks’ heads and trades them in for $5,000. I don’t know why I have these alternate odd memories of being an assassin and working as a maid or setting up different hits and then taking off the head and double wrapping it in plastic inside a duffle bag. It is a pretty good job, actually. I get to do a lot of different jobs, though only for a week or so, waiting for the right time to take my mark down (steel stylus through the ribs into the heart and a little squiggle twist, just like they used to give for lobotomies – presto, one dead guy – now, time to take the head).
I pass out. Then there are guys standing there asking if I need an ambulance. I tell them that I told lifeline I didn’t know, and why did they send the ambulance? The senior guy calls off the REST, which is the second ambulance and the fire truck which are coming (to take bits of me?). We talk and I tell them what my blood pressure will be, and we talk about the local pyromaniac, and it turns out one of the Medics lived right down the street from him. I am not sure how much my neighbors enjoy this conversation at 4 am.
The next day I talked to Lifeline. A guy calls me. He wants me to use a box where there are straws and I need to puff and sip into them. This is because I have to push the button, which is recessed and I don’t have the strength to do it (either by biting, using my thumb knuckle or index finger of the right hand) normally much less after a seizure or during a stroke. I don’t think this is going to work, and ask: What do users with degenerative diseases do? He thinks they stay in bed and have the puff and sip box (larger than a box of cigarettes) by the bed. I do not want to spend days in bed. I cannot do as much as before but I can get out of bed, and wheel to the study. I can even get dressed and put on earrings, despite the knowledge I am not going out – this is the femme rebellion against an illness that steals life away: earrings, Satsuma Body Butter (Yum!), lip gloss, Linda braiding my hair and a push up bra.
I sleep a lot on Saturday, and on Sunday we get up early and match and stamp. I got to match from the three new postcard books I got from Amazon, and one from a Ghibli of Oga and other artist for Studio Ghibli (Totoro, Spirited Away, Howl’s moving Castle and others) shown in a limited exhibit.
The exhibit had a special postcard set, I found a set online, waited for it to go on sale and bought it for $40 (16 postcards). Why? We need medicine and I spend $40 on 16 postcards and shipping from Japan. Because these were high quality art postcards from a great artist. This postcard of Porco Rosso, free in the sky ('A pig's gotta fly'),
available no where else, which once sent I will likely never get or see again, if I can send this to the right person, just might make the difference between solitary sadness and the feeling of knowing that they are special, and will always be special. It is stupid isn’t it, to exchange food and a little more security this month for a belief that not just getting ‘a postcard’ but finding the RIGHT postcard for the right person can make a difference in how they feel, and feel about themselves.
I think some days that like Don Quixote, I have spent too much time in reading and believing that my mind had ‘dried up’ as I believe that all scullery maids are princess’. But I do believe. And while I often fail in matching the 'right' card at the right time, but when I do, it matters and I am, for a time, worthy to be living a life of service...for a time. So with Linda and Cheryl’s help, we matched postcards collected over the past two years, and stamped them,. I was in the study writing postcards for hours until they had to cool my spine. You see, the effort to write so much was overheating my spine with the amount of signals it took to try and move my hand for many hours (due to ‘dead end’ circuits, the body ends up sending huge amounts of signals in order to get one through, so that the hand and arm and fingers can move). I ended up passing out from the heat coming off of my spine, but they helped cool me and I continued. And over 60 postcards get sent out that night.
That was a good thing. I hope the postcards will help people at Xmas time, which can be a lonely time.
Saturday is punky, my face is grey says Linda. I have conversations in bed but can’t see. Typical. This pisses me off, so when I do see I try to go for a walk (the nature of not feeling means no matter how high the blood pressure, heart beat or lung pain, I don’t feel it, or my feet or ankles, so I use a walking stick and sort of bounce around, leaning up against things. I make it outside purely on adrenaline, because truth be told, I am having my period and so is Linda and so emotions are high (like how C-4 sometimes goes ‘bang’ high). Whoever said women shouldn’t be president due to periods is WAY off, as only some/few women (like me) want to kill people and only on one or two days a month, as opposed to an entire government department of guys dedicated to war.
I pass out, or so the stains on my clothes tell me. I keep losing consciousness but Linda and 15 strangers offer to help, I think 14 of the strangers think I am drunk and passed out. I have several small seizures. This only adds to the ‘drunk woman’ look. I hope this means more people will talk to me in the future, as drunk and passed out is far friendlier than scary disease woman. Somehow, I end up at Starbucks. Starbucks is much like going to the hospital: I sit in the wheelchair that arrived with Cheryl and they stop me falling out of it until I can talk again and there are machine noises and beeping. I decide to steal the chocolate bits out of the top of Linda’s Hot chocolate and miss, ending up with whip cream all over my face, having totally dunked myself in her cup. I am sure this will add to my ‘drunk’ rep.
Some readers think that I am an attention seeking addict. I know this from the various comments which are left anon about me getting a ‘fix’ and such. Ironically, these are people I have probably worked through the night to send postcards to, and still do. (sarcasm) Yes, I am an attention seeking drug addict, who is only awake a few hours a day, never gets to go out, has the windows covered to keep out the construction noise – I find spending my time indoors talking to no one the best way to get attention. And the patches work great, except that they leave burn/blister marks where I have them, so my arms and back are covered with those.
The doctor I have treats cancer patients and other late stage/pallative patients. I think those who judge me as some sort of drug junkie would see all of his patients, those dying of cancer as ‘addicts’ or ‘getting our fix’. If someone really has the time to believe or worry about such things, that after two years the desire to not be in pain=drug addict. Because apparently the idea is I could hand my medical file to a doctor (in a city where waiting lists to have a GP are in the hundreds PER GP), have him examine me for 40-50 minutes for four times and each time he up my pain medication, even over my protests the last two times just because I just tell him, ‘gosh my back hurts’ (I don’t tell him that, I tell him about waking up with my teeth clenched so hard that they make cracking noises like ice, but only because he asked, and he nodded as this is something he has seen before, this pain symptom). He is an odd doctor, I explained how I am used to being in pain and now that I can see straight instead of through the red filter of pain haze where no jokes ever make it through (I laughed on Friday, almost hysterically, I haven’t done that in two years). He keeps trying for me to not be in pain. What a strange doctor.
The Fentynal is supposed to be on Pharmacare, but the doctor said that they will take months of tossing it back and forth. I didn’t believe it but Linda said it is true, as he sent in the form right away (a Pharmacare exemption). After a month they told him they needed a detail about if I had tried codine. I had, and he sent it back the next day. Three months later. He says if they keep sending it back asking for details each time, then it never gets an exemption. Even if it does, they never pay back the costs of the Fentynal you buy while waiting for them to decide. You can’t apply if you haven’t bought and are using the patches. Cancer patient often die before they get the exemption. It is a cost cutting game. People lose, but the government wins in saving money. Sad.
I have learned that I really only understand three time periods: Before (when I can remember things from being able bodied), ‘What I know’ which is either all yesterday or this morning, and NOW. So everything that is told me that I remember about costs, or problems covering pill costs, or medication costs, or food costs, it is all in the ‘What I know’ and I feel it all like it was told to me this morning. I do not know that one financial problem may have been told to me six months ago and another last week. I just know them all in ‘What I know.” And I try to figure out how to get a job. I kinda hate NOW because it is filled mostly with money stuff related to medical costs from ‘What I know’. We can’t afford batteries, we can’t afford the phone, we can’t afford condiments for food, we can’t afford multivitamins anymore, we can’t afford the pill, which was keepin Linda and I regular and also lessened mood swings. Because we are married to each other, we can’t get them for free, indeed it is really expensive. We can’t afford the B-12 I need, but it was a gift (thank you). We can’t afford the vitamin D and the Fish oil (to make my veins stronger to stop them from bleeding out all over like mine did. I want beef jerky for Xmas, because I can’t afford that either. We can’t afford hair cuts, and mine has tangles which will serve as nests for small birds come spring time.
This is why ‘NOW’ sucks and why a doctor talking about extending my life depresses me. I am supposed to be happy when all I think of all day is how, on Fentynal, tramacet, tramadot, Lyrica, pot, codeine and aspirin with tension every week the rent is due eating stuff from the freezer, and the dinner of rice crispy squares I had tonight (go rice crispies!) and soup last night. All the tension Linda has had about money from the last year I remember in a big BLAMMO, like it happened an hour ago. I have that memory and feeling every day, every morning and afternoon. I just want us to be able to be as well off as when we were students for over 10 years, and could have a pizza every now and then. Back then I would work an extra job, until I had 2 or 3 or 4 jobs if needed. Now if we have a pizza, that means no thyroid medication for a month. Just a life where I can live peacefully, with caregivers (Linda is meeting with the manager as I am being moved to ‘critical’ in care), while Linda job hunts and then we spend evenings together.
Linda said she is going to write a blog post on Girl’s Gotta Fly so check that out tomorrow. If would like stuff, please let me know, because the problem when I don’t hear from about 50+ people in months is that it really limits my gift giving, which sucks. I buy the gift, then Linda reminds me that we haven’t heard from them in a year or two.
I got Linda her music box from Kiki's Delivery Service, and she liked it, though it wasn’t Xmas yet, it had been a rough week and I wanted her to know that I love her. And now I make sure to thank her each night: "Thank you for taking care of me today." It matters, what she does.
And Cheryl, I gave her one of her presents (Linda has another one coming, so does Cheryl – I got them when I had money from the last manga sale). Know a person and you know the present. Cheryl likes guns, and while buying her an actual GUN collection would be difficult and illegal in Canada, I was able to get her mini-replica guns from a Japanese Hobby store where you can add clips and scopes to the six to ten different assault weapons (including a AK-47). Cheryl was very happy, “Oh a blah blah automatic SLR with grenade launcher! It has been years since I shot one of these..” Cheryl reminisced.
I thought, and hoped, she was joking. I know she was a law enforcement ranger and ‘secured’ facilities after 9/11 but a GRENADE LAUNCHER? No, she wasn’t joking. Turns out some law enforcement people like to collect guns, and shoot them – imagine that. She like them. That made both of us happy. I imagine maybe Xena warrior princess is now sporting an assault weapon, but I certainly hope the figurine character from Yotsuba!! Isn’t playing with guns, no no, leave the AK-47 for Hello Kitty! 
As my grandfather used to say, “Guns aren’t a toy. You could seriously hurt someone. That’s why you have to be 10 or 11 at least before you shoot one.”
But honestly, for Xmas, besides world peace, what I would love for Xmas is home stability – so Linda doesn’t have to try and do everything on her own: for example, a couple someone’s to help pay for the Lyrica, which has to be ordered every 2 months. Without it, I have, on average, 15 seizures a day and nerve pain. Which isn’t the ‘good workout’ pain. Some to help pay for Linda’s anti-depressant and anxiety med (when your caregiver, who has 4 of the top 5 stresses possible outside of war going all the time and she DOESN’T have her meds, it is very scary for the helpless person). And help to pay my OCD and anti-depressant med (it took me 8 years to find the right one, and without it, well, I start stabbing things through myself, or I did before – it is for people resistant for SSI) which is ordered every months or so here - I used to take 4 mg, I am not sure what Linda gives me now, I think it might be 6 mg or 8 mg under doctor’s prescription – on a side note, it has been found helpful to reduce pain in over 45% of people with fibro. Also the patches, which I am not sure how much they are, but Linda would (her email is Linda.mcclung at shaw.ca), as the doctor changed the frequency from 3 days to 2 days, meaning a 50% jump in the amount of patches we need for a single month.
Am I embarrassed to say, “If you want to give an Xmas gift, please give pain pills or anti-depressants, as the thyroid med is covered by Pharma-care.” Sure. But having a life where I and thus Linda think about his and only this from morning until night sucks worse. There are lots of stuff we could do with apple juice and cinnamon and cloves. Or watch movies from the library.
If you do buy a Xmas gift, or set up with Linda to help sponsor a medicine, please let her know YOUR address, so I can send you a present. I send presents not just because it is bonding or polite (though it is) but because I want things to be where they can be happy, with caring people.
Linda is here, so much for a short little update.
Hey, after a call at 10:30 am for Linda to tell me that my GP was holding me pain medication renewal hostage until I came in so he could "tell me his thoughts" (turns out his thoughts were that the seizure I had in his office he felt was a "pseudo-seizure" which did not negate the fact that the neurologists still state I have progressive neuropathy, progressive idiopathic anemia, at least one but probably two auto-immune diseases and autonomic failure, and that I am in mind blowing pain).
Well, those promises for the pain specialist? It turns out he didn't make them, though he TALKED to the pain specialist who could get me in within a month, but since June, he had not made the referrals, both I AND the hospital has requested: for pain and epilepsy. Why. Because I had not obeyed him and come back the following week and had cancelled that appointment. I was in the hospital, that is why I missed the appointment (or I was in home after the hospital unable to move).
So it turns out that becuase he couldn't give me 'his opinion' I was in pain, and still am in pain, I fall asleep while in pain, and I wake because the pain breaks through my consciousness. And I was that way for months, because.......
I don't know, this is the same doctor who today I showed my blue fingertips to and he replied, "I'm not impressed!" (Guess what doc, I'm not a circus act!). When I started attacking him, as in, when his fellow doctors showed an ailment did he say to them, "I'm not impressed" he marched tight lipped out of the room and returned with an pulse oximeter.
"It's 72%" he said grudgingly and then dropped the oximeter on the counter and continued on with how my being in pain was MY fault because if I had only done what he had expected of me, to return and see him, then those referrals would have been made.
"Put it in your computer." I said. I think he was confused about what, "The 72%, put it in your computer." You see, now I can demand a referral to a respirologist; I may be furious but I am not stupid.
Anyway, Linda and I decided this town and its hell of Beacon, GP's, doctors and the rest was SO bad, that Port Angeles with the hairy bearded men who carry off women "'cause they pretty!" is actually the LESSER of two evils. Plus I can go to the Hello Kitty store and convince more 16 year olds to take their DADDY to a Hello Kitty Bondage Hotel (read the last entry on Port Angeles). Yeah, good plan.
I have been working on some postcards, so I will post them early, here are some of those going out. I take the pictures becuase once I mail them, there is no way for me to remember what they look like. I hope you enjoy them too.
I have Lyrica. I did not get it from my GP. Linda talked to him, he wasn’t ready to prescribe anything but if I wrote him a paper, including a list of all the pain I felt, he ‘might’ be able to talk to the pain specialist, sometime next week or the week after.. When Linda told me this over the phone this afternoon, I was in so much pain I didn’t know whether to scream or cry. I did a bit of both.
I called the hospital and asked them what should I do, was ER the place for me? They said that if I was in that much pain, then I NEEDED to be treated. No disagreement here. She gave me a number for the head RN. I called and she listened to me and we talked and she told me to go to a walk-in clinic, that some were open until 9:00 pm tonight, that she could tell over the phone I needed pain control NOW. And no, I didn't sound like a junkie but a common condition, needing pain control while waiting for a pain specialist. She said the walk-in clinics just want to move you in and out, make some money.
The walk in clinic nearest to me was open until 8:00 and Linda had just arrived home so I told her we should go now, before my nap. I looked like crap. I wheeled in, the pain so bad I forgot the postcards I assembled to bring with me, that level of pain where connecting thought A to thought B just never happens. They put me in a room and the receptionist talked to me. First, she just couldn’t BELIEVE I was in my thirties, and kept saying, “No way!” (considering I was pasty and my arms were different colors I think that was a compliment). Then as her boyfriend was in school to be a neurosurgeon, she wanted to know about my condition but kept saying, “That’s crazy” or “Totally crazy.” About my various conditions (or that my arm was turning green due to the heat). It was obvious she didn’t know this was a terminal condition and was going how it was, “like totally tragic” that I was in a wheelchair.
The Doctor kept going by but never came in, he literally saw every other person who came in after us before he came in. He just kept staring at me and then walking on. Okay yes, in a wheelchair, face totally white pasty in pain, one arm with reynauds to the shoulder, the other purple. I guess he figured I wasn’t a 10 minute case. When he came he said we had 3 minutes to tell him my condition and why we were there. He ignored me after it became clear my speech was slower because of problems remaining from my stroke. He kept trying to put down that I had MS. He had never heard of MSA or autonomic failure, but he had heard of Lyrica. He prescribed me enough for a month and we were OUT OF THERE. That means that I can go back to my GP and say (hopefully), “We have been using this and it works!” (this is how we did it with the heart medication) and we get a lecture about how that isn’t the way it is supposed to work but then he renews the prescription. It turns out this is like the Pro version of Gabipentin (sic) which I tried but gave me heart and BP problems as a side effect. This drug is next generation, better and has less side effects.
The nurse was right, I had the script and so off I went. I put in the prescription and then off to bed, and then up an hour later, not fully rested but to get Linda ready to post the mail tomorrow; 17 postcards and 12 or so ‘surprises.’ Also the receipts of things I am expecting and hoping are in the Post office box.
I take my first Lyrica pill tomorrow morning in case I have insomnia (rare side effect), which tonight would put me in a seizure quick, but if I can’t sleep tomorrow afternoon for the first time in 18 months, I will figure out what to do then, and can survive that. But I hope that in 2-3 days I will have significantly less pain. I can double the dosage after three days. What was strange is that the pharmacist and everyone else, I think even the doctor, just LOOKING at me didn't see a problem with me on morphine or other more, effective opiates. But my GP treats me like this whole anemia, autoimmune disease, peripheral neuropathy and the rest is some excessively tricky way for me to scam him into giving me hard drugs. It makes me feel like a criminal every time I take a pain pill. So thanks to a RN who actually gives a damn and a phone operator at the hospital who gave a damn, they showed me to the back door to getting Lyrica.
I hope in a few days my blogs will be about the good parts of my life, the funny parts. Because this doesn’t seem very funny to me right now.
I was literally insane, planning to take a hammer to my GP’s visit (he said that if I came to an appointment next week and explained it to him myself he ‘might’ think about my pain control). He burned a lot of trust bridges. I needed him, bad. He ran and hid. I don’t forget that. If he was concerned, as he was the last visit, to call and have an emergency visit and drag me down to his office because he felt ‘threatened’ because as he said, I was intellectual and can be abrasive. So, my GP feels the girl is just too intelligent and demands accountability? Maybe there is someone on his board of directors who would like to ask him (instead of the female patient), why he isn’t meeting the FIRST mandate of the non-profit society, Cool Aid of Victoria: The purposes of the Society are: a) To respect the innate value and autonomy of the individuals we serve and to provide for their essential needs.
Actually anytime a male doctor (or any doctor) calls in someone who is sick and ill and he knows that and HASN’T treated them but wants to tell them that they better not THEATEN him with their INTELLEGENCE any time soon... Well, let me tell you doctor what I told the last person who tried that threat: “You had better hit me and hope I am unconscious so you can rape me. Because if you plan me to scale back my brain so you can feel more a man, then you need to find another planet or line of work, you arrogant, sack of insecurity. And isn’t rape what men like you do, when you can’t shut women like me up. So either make your move, or shut it and accept that I MAY be the bigger brain in the room.”
If someone in the Hague is reading this and has an empty slot on human experimentation, and crimes against humanity for a trial; I can testify of one doctor who treated me in a way it is illegal to treat a dog in this province.
Postscript: This post was written after 16 continuing hours of pain. Pain which stopped me from sleeping, and pain which made me unable to open doors or turn on lights. After a week of pain. And after I had to spend from 4:30-7:30 pm, fighting and going to a walk-in because my GP had called to say he 'might' give me some pain control IF I wrote what he wanted and IF I came when he wanted....four days later. So no, I suppose the end of this post wasn't very rational, except in the way people who are under pain and a form of dictatorship keep themselves going, stop themselves from being broken. Or let me put it this way, imagine being in labour with a baby for a WEEK then have the doctor look at his watch and tell you he might be able to get back to you to deliver that baby in four day and think about how you might feel about that doctor in the next several hours, knowing it is just YOU and the PAIN.
Dr. Cool was not in a panic, nor was he yelling out everything for the ER to hear. He had been going over the notes on my disease and realized that it was not a structure problem, but an electrical problem. He gave me morphine and ativan and the RN Busy, who was yanked was telling the other RN on the other side of the curtain that I was a word that meant both agitated and mentally out there. This pissed off Linda, who was right there. Dr. Gungho later read the chart and apologized to her (or rather he apologized about the way he had treated me, but not saying sorry to me, but Linda).
