Friday, June 26, 2009

I take Synthyoid. Pain and life management: talking openly

In just one day, things change.

I took Synthyoid this morning: the synthetic thyroid medication which we hope will decrease my fatigue and increase my quality of life.

Yesterday afternoon I had a long talk with a doctor about pain management and the auto-immune disease that is attacking my thyroid. They don’t know what it is but when my TPO (the anti-bodies my thyroid makes to defend itself) came back and they were only 25 times normal instead of 30-35 times I thought maybe…maybe they were winning. “No, oh no.” She said, “That thyroid is dead, the TSH will be going high, so let’s try synthyoid.”

It was 712 days from diagnosis including the day of diagnosis that I tried to get the medication to improve my health.

712 days.The GP didn’t want to give Synthyoid at first because it has been linked to osteoporosis. I had to explain that Evergreen hospital report said that I don’t need to worry about those kind of diseases. The getting old kind.

Linda brought out the Tramacet, which is our ‘breakthrough’ medication. A breakthrough pain medication is something you only take when the pain is so great that you cannot function without it. Since I am unemployed, ‘function’ means an inability to move. I take 3-4 a day. We were going away for 4 days, and ONLY had 40, and we didn’t know if that would be enough. Six months ago, 10 would last me for a month.

We talked about the need for a NEW ‘Breakthrough’ Pain medication, because this isn’t it. I am, every minute of the day in nerve and muscular pain to the point that it affects my thinking, my speech, my movement, tremors in my arms, my hands and induces seizures. That is ON the ‘breakthrough’ pain medication. The medication works, it is just my pain levels have doubled since April and we don’t know why; and without a GP or specialist to care, no one knows why. At the last GP, they had called the pain specialist we had, one who was more an expert in Fibro and he said that he didn’t know anything else to do. Nothing else to do: I was on three different pain medications, two of them synthetic opiates; I am taking 120-125% of the MAXIMUM recommended dose DAILY, sometimes more. I AM damaging my living. Plus I am taking a nerve blocker.

When I am in pain, extreme pain, as might hit me as much as 15 to 20 times a day, I will fall from whatever height without feeling it. I will fall out of a chair onto my face without my hand, in a rigor clench, moving from where they are pain-locked at my side. It is hard to breath, the pain makes it hard to breath, as sometimes the lungs, or the muscles of the lungs themselves are in pain; I make noises, like an animal in pain. If my lungs are locked then I mewl, or a groan, or a moan. At first, when I feel it coming down on me like an avalanche, a great thunder inside coming down the mountain and as it covers me I scream, and SCREAM, and SCREAM until I am buried underneath it, and then I can’t breath or scream at all.

I cannot see, I cannot move, I am not rational, I can with extreme effort catch a word or a phrase or a bit of conversation and hold it. If I am on the bed, I might see for a moment the Hello Kitty hanging scroll and think that if I can get the sheet around my neck I could hang myself. That if I could attach it to the bed somehow and use the electrical control I could strangle myself. Then the pain would end. But I try to move my arm, maybe I start to put some weight on it and the pain blacks me out, a thin membrane of consciousness with the fists and baseball bats of pain beating on me.

That is when a caregiver has to put a pill in my mouth, try to make sure I do not take it into my lungs and get some liquid into me/on me and get the pill down. Then the pain reduces so that I am a burning fire. Half insane, able to speak somewhat but also just as likely to grab a pair of scissors or a pen and try to jam in through my arm, to see if THAT pain, the pain I CAN control can distract me.
Linda can’t watch me during some of the times, I mewl. She leaves. She simply can’t watch. I asked her if she had a palliative plan (as I have authorized her to take action when I am in pain beyond bearing) and she said no. I don’t blame Linda, though to lie there, second after second waiting for ten minutes, for twenty, for thirty, for more, for anyone to come, as I have done more than once, it leaves a etching, a mark, scars. But then, we all, even me, the whole blog, the readers, have been shying away, not knowing what to say, averting the eyes to give me some dignity, slipping away for this post. DON’T LEAVE. THIS is my life. And this is the life of many, many people, and if we can talk about pregnancy, or having kids, or other things without always having to having the BIG ANSWER, then we can talk about this, right? About pain without a limited end....or dying.

Because that is the problem, as the doctor explained, narcotics CAN be given but each person adapts to the level of the narcotic differently so a 5 mg pill this month may require a 10 mg pill in five months for the same effect. And with my pain doubling as it is, that would be maybe a 20 mg pill in four or five months, then a 40 mg pill in eight….do you start to understand. No one can go on these levels of pills without being physically addicted to them. And with my disease, no one knows if I am going to die this week due to heart failure (remember my heart just STOPPING or all chambers beating at once is the most common cause for death of people my age group, followed by just stopping breathing, like I did today a few times, enough to turn my fingers purple – “like a snow cone” I said when I could talk).

There is a drug with a patch called Fentynal which isn’t AS addictive but can be 80 times MORE powerful than morphine. The doctor thinks this would be a good fit for me…..but GP’s can’t prescribe it in Canada, or at least BC. So I am referred to a pain clinic at the hospital, though she warns me, it will take “several months.” In two months I will take more pain pills than I took the first 18 months….and I will be in more pain than I was when boxing. It is hard to write that, it is hard to think about that, looming over me. It is hard to have it alone in my head.

I should share with you some of the realities, which maybe I have already, that while I can remember how to speak like an adult, I am not an adult most of the time anymore. I am 10 or 12, sometimes five. And I am scared.There are two rules we put in to help me survive. So that ANYONE interacting with me should understand:

1) Elizabeth is allowed to be selfish for survival. I don't have to be a good host, I don't have to make sure everyone has a drink. I don’t have to use all my energy getting back to people (though I keep trying). People forget this a LOT, because for posts, for blogs, for emails for minutes, I seem LIKE THEM. So they want to tell me adult problems, or engage in adult stuff and I am SUPPOSED to go, "No, I am no longer converting (converting oxygen correctly)" or “No, I don’t really understand, this makes me feel bad.” But I don’t. And people forget.

2) Elizabeth is almost certainly less old than she will appear to be. While I have the memory of the vocab I am not often Dr. McClung. Sometimes, occasionally, and it feels like flying, but I AM brain damaged, I have seizures daily, I have limited oxygen going to my brain and I am regressed. I am usually 10-12 and I am scared. I am scared of new people, I am scared of angry emails, I am scared of people when they want to unload and tell me how THEY are scared. And I go from scared to terrified because if an ADULT is scared, if an ADULT is telling ME, who needs help to breath and has to wait for them to move me, that they are scared, or have financial issues then I am terrified. What parent 'unloads' the financial, job worries, etc on the 10 year old? Not many, and the 10 year olds who have it happen to them probably aren’t doing very hot in school (acting out, retreating internally, etc). I can’t be the tough little girl who takes it all – not with a body and with pain like this. Not when I feel like people are beating me and no one can tell me WHY or WHAT I HAVE DONE to deserve this?

What is left: that person, the Beth, the 'Bethie' is someone who needs comfort. Someone who is confused, and who needs love and caring. That is also why the wishlist is full of manga; because it is what I, in THIS brain, can use….some times, to distract me from the pain, to survive the hours from when one adult comes and another adult comes. You see, this morning, I couldn’t take ANY pain pills because there was no drink, so I waited until an adult came (my caregiver) because she knows where the drinks are (how can I not know my kitchen? Well, have I gotten a drink in the last two days? Not this week.). I cannot blend a smoothie: not when my hand cannot even pick UP a strawberry after five tries as happened today, each time growing weaker. Yes, I am SURE there are better things, more medical things to put on the wish list. But since I CANNOT have narcotics, and I will explain why very soon, I put on the one pain killer I know which works for me, the one thing which might make a smile which releases endorphins and decreases pain: manga. Is it selfish? Yes. I don’t want to be in pain. I don’t want a play station, I don’t have a TV, I just want something (a manga) that I can drop five to eight times without damaging it and pick it up again and use it.

At the hospital I found out I was malnourished. Just like someone who was living on the street. Just like a sailor at sea in the old days. I was eating what Linda was but the energy to eat it, process it through my body and excrete it was being wasted because it wasn’t absorbing the nutrients. The amount of times my systems ‘crash’ (one of the three rules of my disease, beyond that I will always get weaker from the moment I wake up is that any system will crash at any time for no reason we can understand), is several a week. I have not had a week, I have not had three constant days of eat, sleep, rest, or even eat, sleep, work instead of eat, emergency, sleep, emergency, work, eat, sleep, emergency in at least the whole of ‘Otter’ which is June (it says that on the bottom: June - June is a book is a confusing word)).

Every single nutrient that is not absorbed has its own disease, and of the three nutrients they ran, I am off in two of them. Having hair fall out is scary, what about having loose teeth in a few months because of scurvy that frightens the hell out of me, or rickets, or so many other diseases. And to find out WHY, WHY, WHY I need a GI specialist, and to get the GI specialist I need a GP and a referral. And even then after all the testing what if they is part of the disease? That there is absolutely nothing they can do. Because this is just part of autonomic failure of the peripherial systems regulating extraction in the intestines. The amount of Florastor has almost doubled, the only probiotic which seems to at least be holding the food through the system and give it a chance; a few months supply and we opened our last bottle a few days ago (it is here on the wishlist if you want to help).

Let me explain what this means in terms of medical costs; our food costs are now significantly higher because almost ANY raw fruit or veg will cause a complete system flush. When say complete, I am saying if you are eating strawberries, then after five hours of cramps and pain, you will see bites of strawberry, completely uncoated with any brown (also meaning NO NUTRIUTS were absorbed) coming out. So now, to solve that, we blend it, I drink my food. We blend strawberries, we blend ice cream and milk, and bananas and all the foods that have the vitamins I might need in hopes that we are slowing down the process. Because we don’t HAVE specialist advising us (actually though this was a nutritional specialist from VIHA who recommended it). It takes time. It takes more money. And then I need a pro-biotic to make sure it goes through the system at the correct speed and has the nutrients taken out. Florastor is the one that has been used for over 50 years. When you have Cipro for your UTI, and you have constant diarrhea, it is Florastor they recommend. If you want to donate for food or gatorade please go to ‘A girl’s got to fly’ as there is a link there. I drink about $140-160 of gatorade and powerade a month (that’s not a ‘insured item’ even though the Mayo Clinic recommends it). I have to drink caffine to simulate my heart, that is not covered either, nor are these extra food costs. Linda works to try and cover it all. Because she wants me to live.

So back to pain killers, and pain and suicide and talking about it. Because I WANT to talk about it. I have been so alone, so incredibly lonely I cry almost every day. I don’t NEED the ‘BIG ANSWER’ – what I need are people who are willing to risk saying maybe stupid things. People who try to find a way to relate, try to imagine and trying to figure out as we go along what the appropriate boundaries are to this all because they want to show me that is it OK to talk about death, dying and pain. That is what I need. That is what will make me less scared and less alone. I don’t WANT to die. I just don’t want to be in constant pain. Linda says I look like the girl in white sometimes, all the life drained and beaten out of me, as I try to hug, to go through the motions hoping it helps her, hoping it helps me.

So the problem is that as the doctor said, ‘I have found that whatever they tell you the time is, it could be twice that.” Meaning she has had people who live five years after given two or even 18 months. And while that is sort of great, there is a BIG problem. The problem is that if I go onto narcotics, with the stepping up (remember, the doubling and quadrupling) there comes a point where it doesn’t go any higher – the pain isn’t reduced any more. And what if I still have a year to live. Well, they can’t TAKE me off that drug because I am physically dependant on it just as any addict would be, without me going into withdrawal – which even at this point would probably kill me (I am not on anything that could give me withdrawal). So I have a future where I CAN get pain control, or better pain control, if I can survive a few months without going insane but what if I live longer and my disease just increases my pain beyond what can be given to me….and I still have six months or a year of life left. A year left at a level of pure, unimaginable pain. It terrifies me. Right now, I have dreams where people are experimenting on me, are taking off my skin, are sawing off limbs and AS the pain medication wears off, then I simply wake up and lie there, unable to move, in pain, wondering if I have all my limbs. In pain until I can call or get the cup which has the sedative and pain killer for another round (or Linda helps me take it as she does during EVERY night). I have to be sedated because the pain killers are NOT enough.

So on the one hand, the future of living a better quality of life which I and Linda and others worked for two years started today. But the pain has caught up with us. As have other complications. And the futures that are in front of me, they terrify me. The terrify the child me who only understands, “IT HURTS!” and the adult me, who can see all the possibilities, who can map it out mentally: she is totally terrified. She wants that extra energy, yes, and maybe, as we talked to the GP, she said if the pain clinic would agree, my caregiver could have the narcotic for use once to three times a week – for the WORST times and THAT would not get me addicted. And that would prolong things right. And I could go to hawaii and laugh. And I could blog about the farmers market we went to today, and I will. But first, I needed to talk about this. I needed you to understand that I am regularly in pain, maxed out on pain killers that are above the limit, and the GP’s know that, but what else IS THERE – and I am totally immobilized and moaning and I am so bad, so painful and horrific to see that Linda walks out. And if Linda walks out, then I think maybe a lot of you would too, I think maybe I would too. And she hasn’t done it often, but sometimes it is too much for her. To see what must be my body ripping itself apart again, again and again. Too much for her....JUST TO SEE IT.

What do you think it is like to live it?

So when I ask for a shotgun, it isn’t a cute joke anymore. And if we keep pretending it is, then I will simply be alone. My grandfather died humming, he died humming and that is how I want to die. And to read this, you will need to accept that I will die, and that it might be one of the more ugly deaths. “The last few days/weeks/months were bad.” People say. They can talk about marriage, and starting life and college and pregnancy and children so lets talk about this. I already know it can be bad; share your stories and let’s just talk about it. Adult and child Elizabeth are already terrified. I did palliative care a little as a very young teen so I know what someone being in pain and swearing and screaming looks like. I am past that. I want to LIVE, even if it IS drinking my food. But after three days of terrible, terrible pain, it is hard to live. There is so little joy left. It is hard, even now to distract myself with shows, or art, to find joy when the pain pours down and over me, trickling into every part of me like rain.


Lene Andersen said...

I will talk to you about dying.

I've been there, at the place where you can see the voluntary exit because the pain will be to much. I don't think I was ever in the kind of pain you're in, but I knew there would be a limit to how much I could take and I could see it from where I was. It is terrifying.

I will talk to you about it. email to follow.

it breaks my heart that you have to go through this. AT first I thought "fuck addiction - you're dying, who cares" but that doctor finally explained why the hesitation and that I can respect. What about pot? Might it be time to try that?

Big hugs.

JaneB said...

I don't know what to say. And I don't have the words to say it, unlike you, word-smith. But I will try... because of what your child-self might read into silence (because of what my child self would read into no-response).

I am here, I am listening. I am always at the end of the email to listen. I care.

I want a magic wand to fix things, and not being able to help hurts, it really does. Reading, listening, seems so little - but from what you write here, it might matter to you that someone is listening, not walking away. So I come here and listen. And some Florestan and a manga are on their way to you.

I'm sorry if I burden you sometimes, I'm not so good at filtering for the different Elizabeths - tell me when I get it wrong please!

Much love, for what it's worth

Joan K said...

Dear Elizabeth,

I wish I lived near you. I would visit with my dog or my kitty - your choice and you could pet their soft fur and feel their kisses on your hands. My dog, a Boston terrier is snoring on the chair near me. She is loud enough to wake us on another floor!

I will send you some manga after the beginning of the month, when I have some money.

My wife and I are both thinking of you and will keep commenting and reading your blog.

take care,

Joan (and Donna)

cheryl g said...

I admit I have been trying to deny that you are dying but it is time for me to stop. I know you are dying and not talking about it won't help or protect any of us.

I want to talk to Linda about a palliative plan. I want to find ways for you to deal with the pain. I don't want you to be alone.

I don't think I am saying what I feel very well so I hope when we are talking I do better.

wendryn said...

So we talk about death. Death is scary, is big, is the complete unknown, but it is also something that happens to everyone. I have not experienced pain like yours. My pain has always been controllable and eventually heals, although I have woken up to pain that holds me still a few times. I have been with people as they died, so I have a little experience there.

I know it's scary, especially for young Elizabeth, who needs to be held and cared for while people expect you to be able to handle things.

I can't imagine living in constant pain. My mind shies away from it, like a horse scared by a snake. Living with it, either from you perspective, where you are living inside it, or from Linda's, watching you live through it and fight to stay alive, must be incredibly difficult. I wish I could take the pain away, just for a few minutes eve, to give you a little rest, but I don't know how.

I hope the Synthyoid helps. I hope they find a way to manage your pain better. I hope you find joy, even in little bits and pieces. If you want to talk about death or dying or being afraid or anything else, I'm here. Death is something out society is terrified of. The way I grew up, though, it was part of life, the same kind of thing as sex and childbirth, to talk about seriously and even to joke about. I have found that this is weird, but if you need someone to bounce ideas off of or to vent to, you won't weird me out or make me uncomfortable. I don't know if that helps, but the offer stands if it does.

*hugs* to both of you, and to Cheryl.

Nancy said...

I really wanted to make a comment today, and to tell you how much I agree with your call for honest discussions of death as well as life. We gloss over dying too much in our society, and that makes so many people feel alone. So I wanted you to know that I'm still here, and still reading, and that you matter to me very much.

Sherry in Ohio said...

I don't know what to say either my dear Elizabeth, because I am so angry at your doctors, the system that is supposed to help you, this cruel disease, the bureaucratic nightmare and injustice of having so many specialists turn you away saying there is nothing they can do because they do not want to be bothered, the arrogance, incompetence and ineptitude of your "team of professionals" and all of the extra, unnecessary horrors and humiliations you and Linda have undergone over the past 3 years, shaming and blaming you for having a disease they know little about and don't want to take the time to learn enough about to understand. It's so unfair and sickening, as if you brought this all on yourself, invited it into your life just so you could pester them with questions that have no answers that make them feel incompetent, so the only thing to do is to blame you, the suffering victim.

And the lack of pain management for so long - sadistic at best and criminal at worst. I don't know how these doctors live with themselves as they deprive people with your level of chronic intractable pain the barest allowance of medications in the hopes of staving off physical tolerance and addiction.

I know that many in your shoes would be tempted to obtain the needed Synthroid and pain medication in illegal or semi-legal ways in order to circumvent the system which is not doing its job and deliberately allowing you to suffer. When you dare to speak up and ask for something that should be your right, you are told to shut up or they will terminate your care altogether. They give you lectures about your know-it-all attitude, punish you for knowing more about your disease than they (the arrogance of you to challenge my authority and make me look bad!)
I've decided that people in general are callous and mean because you remind them of their own mortality and vulnerability, how capricious and cruel fate can be. There are those who as you point out, care, but simply don't know what to say or how to say it and are afraid of offending you or hurting your feelings, not realizing that total abandonment hurts the most.

It is depressing and heartbreaking to watch human suffering of this magnitude, when one is powerless to alleviate the pain or do anything about it, along with a sense of powerlessness. And so they turn away.

I got two of your manga postcards yesterday, one for me and they made my day....they were beautiful and deeply appreciated.

I hope the Synthroid helps a little with the energy and by some miracle you find a good, courageous pain specialist who knows how to treat pain for those with your diagnosis and symptoms. I am glad the manga brings you a little joy. Please do not feel that you cannot tell it like it is on your own blog about your own life. Do not let people off the hook so easily or let them dictate what you write about. You do not "owe" your readers a Polyanna smile through the tears of pain.

I know that many like myself wish that we could do something immediately to make it better for you and lessen your suffering, but know that we do care and you are loved for he beautiful, special person that you are. Even when words fail us and we don't know what to say....

Elizabeth McClung said...

Thank goodness, everyone didn't head for the hills. I understand if they did - I mean, even I until now did not have a point of reference and it suddenly went from 'kinda fun and talking about yarn and doctors blog' to 'What the!?'

Lene: I think you probably were, but with RA, you didn't have the options to keep doing yourself harm: I honestly believe, I have a MUCH greater capacity for stupity in not resting than almost any other human. But yeah, if the now is on the edge of sanity, what does a couple months, even a couple weeks look like? Not so great - Ironically I am going to say, I am VERY thankful and feel very stupid to not have 'got' it for people who have migranes a lot until now. If you vomit because of the pain, that's a LOT of pain. And the thankful - even now I say inside, "Geez, how do they do it, how do they hold down the jobs, I couldn't do that." - while people are looking at me going, "I couldn't do that!" - yeah, well, when the one person I know who severed their finger and had to sit for several hours to have it reattached said they were glad of migraines, because OTHERWISE the pain might have been unbearable. GEEZ! So I'm sorry for being a bit of an idiot about pain until now (or recently). I thought I knew pain because I did marathons. Er...not really.

Thank you Lene for reminding me, the GP went, "That's right, you can get Pot legally here!" - I said, "You would need to sign a piece of paper, I can bring it in." She said, "Bring it in. It might not help but it might."

So that is an option, could cut down the amount of sleep meds - stop me killing my liver.

Jane B: I basically stole parts of this from various conversations I had plus were having so not so much word smith as "okay, take 3!" I am glad you commented, and I think it is brave. If your child self gets that.

Thank you for the Florastor, and Linda will thank you, she asked me to put it on as we were going through it faster than her plans. And the child self says thanks for the manga. I have a post it note on every manga that people give and the name, so I know every time I pick it up who it came from, so I am thankful every time I see it. And I AM thankful.

It is okay, Linda and Cheryl and even Elizabeth are not so good at telling the different Elizabeths. When Cheryl and Linda go, "What do you think? About 8?" And I think, "No I'm NOT!" and they go, "Probably should sleep." and I think, "I don't need a nap! I don't! And if they get to stay up why can't I, it is not FAIR!" - yeah, they got the age right.

Joan K: I would love more animal visits. I like animals, even if I can't really feel with my hands, I like they way they climb over me. I like being there, seeing them.

Thanks for hanging, and like I said, the next one will be about the farmers market, and I will go back and comment on the last one, but I NEEDED to get this out of my head, if that makes any sense.


Cheryl: Hey, I still like to admit that I could go on for years, I just can't quite see HOW anymore. I keep waiting to be turned into the bionic woman, I already have the super-hearing! But apparently they DON'T have the technology.

I think if we are okay with making mistakes, and I am, then we can keep trying to say what we want to until we feel that is what we want to say. As long as you don't tell me to keep a stiff upper lip, I mean, I gave blood and didn't scream so the people in the hospital could sleep, if that isn't enough stiff upper lip then what is?

Elizabeth McClung said...

Wendryn: This is true, it does happen to all families, I just had two deaths in mine and yet we don't talk about it, not even to the point of how anyone feels. Of course, the people with first hand knowledge tend not to comment (sorry, that was a bit of a sick joke - but you said I could joke!).

I do try to handle things and I find that while my own reality I can see because I cannot escape it, I have friends, I know people in situations whose reality I do not understand, cannot understand. Penny Arcade raises about 250,000 each year for Ped's wings for game boys and other hand held game systems. I am thinking they do it because they love and comment about games and don't realize that it is probably the one time a pallative kid gets to NOT BE a pallative kid and how it is pain control and they might like them up in the adult pallative section (do not want hand held game, just example!)

I want joy too and I hope that Synthyoid or Synthoid can help, can make me feel less fatigued, less sandbagged, it is hard enough having the pain, having that AND having to lean against a wall and take it sort of sucks big time.

I want to be sane again. I don't think being in pain ALL the time makes for a nice and healthy Beth - on the other hand, it might make for some REALLY interesting books?

Nancy: Thanks, yes, Linda talked about how someone announced a pregnancy and everyone stopped and told stories and talk - I am guessing if they said, "Yeah, I'm dying and have cancer in most of my body." There would be a lot of, "So what project did you want me to look at?" people turning to each other, pretending they didn't hear, a few 'so sorry dear' and then ZIP, head for the exit!

Thanks - I will narrate, or try until the end, I try to NOT do as many blogs on the non rational days.

Elizabeth McClung said...

Sherry: I keep narrating my experience including the good encounters like this doctor (they were really good - explained the narcotics thing in a way I could understand - not exactly what I WANTED to hear, but I could understand). But after so long and even an ER which doesn't want to take responsibility, I am just fatigued, so fatigued. That people have the same experiences the world around only makes me more convinced that if I DID have energy, I would need to write this or do something to let people know that we ARE leaving people behind, children, seniors, citizen, the brightest, the students, the people who have created and been part of our society - when it comes time to help them, often it is luck, or who has the energy to keep fighting (and doesn't live in a small town), or has money who gets the help. And that is wrong - on the day when our Health Minister for the province announced a privitization scheme for health care. Joy.

Linda says she understands the people who go on street corners to get heroin for loved ones. And I certainly have thought of it many a time.

When a doctor puts you in unbearable pain or withdrawls pain support it is called, "A difference of opinion" when YOU do it to a doctor, it is called, "Assualt" - it really convinces me that next life, I have to be either a lawyer or a doctor!

I understand those who care and are silent, and I understand those who are scared and go away for a bit because these are not easy things to read - because I am not OLD, I am sort of JUST LIKE THEM. And I am not perky with happy thoughts of the day (at least not today! - um.....recycle?). And so like the me of my earlier life, when friends got MS, it was sad (What is that again?....oh yeah, now I remember) but not ME, when some got cancer, well I didn't have the indicators so it wasn't ME, when others got Lupus, got Celiac, got Fibro, got M.E., when a couple died, it was sad, I mean, they dropped out of choir and everything (I did after a while finally clue in to VISIT them - a while being about 10 years so I am not exactly a saint, and deeply ashamed). But yeah, I understand because that was me too.

I am glad you liked the postcards!

Thanks, you flatter me in ways that make me not know how to respond. And as Cheryl and Linda will say, I DO try and smile through the pain and it is downright creepy so they tell me to stop and just BE. I'm going to try that for a while, if I can.

liz said...

I am thinking of you and hoping hoping hoping that there is a doctor who will see you and help you.

FridaWrites said...

I'm not going to leave because pretty much I'm stuck on the couch all the time from pain. It scared me when I couldn't email for more than a couple of days that you'd forget me in that time--and that's not fair to you to lose a friendship or feel more alone during the day.

I am glad about the Synthroid but still mad that you couldn't get it before. I am feeling a lot of anger toward the medical profession as a whole lately. And sad about the pain--I thought yes that the Fentanyl would be a good idea but felt sad when I read that it's more difficult for you to get in Canada.

I am crying myself from breakthrough pain today but can't take more medicie because I have a per month prescription and a pain cotract and since the pain isn't getting any better I'd use it all up in 15-20 days just to take the *edge* off.

I really do wish you had a nutritionist to advise.

I have been suicidal from pain before too but I don't know that there's a solution.

CJF said...

Very big hugs from Oxford. I have been sending many of the recent (beautiful and heartbreaking) posts you have written to friends training to be (or now beginning to be) doctors in hopes that at least a few in the next generation of MDs will understand when they have to take a risk, really listen to a patient, and ACT.

SharonMV said...

Dear Beth,
I don't think you need to worry about addiction as much as the doctors say. I hope you're able to get the patch, it has helped me. Last year my pain levels went up (not to the level you describe) and starting on the patch really helped. It is a big problem that you're levels are increasing so fast, plus your body does become used to the meds & you need higher doses. But there are ways to deal with these problems. You shouldn't have to be in so much pain now just so you'll have meds to take in the future. If you can't get a decent pain specialist, maybe you should try to see an oncologist as they often have to deal with intractable pain.

Try to get the patch. If they start you on the lower dose patch & it's not enough, ask for the higher dose. It's used for chronic conditions, you don't have to be dying to get it (at least not here in the US). It's harder to get the Rx & refills, they have stricter rules, but you have a real need. It will be easier for you to take as each patch lasts for 3 days
Try the pot! If it's legal, why not. It helps with pain & may help you eat more.

Whatever the doctors say, you should not have to be in so much pain. I wish there was someone there who could help you directly in dealing with the doctors, someone with medical knowledge. Are there any patient advocates in BC? Either with the hospital or through the national health? Maybe a volunteer or non-profit organization which works with a hospice? It's so hard I know when you have to try & deal with all this stuff on your own.

I've been e-mailing, just so you know someone's thinking of you (no need to reply, I could tell you were going through a bad period).

Love, Sharon

PS: Hooray on the synthroid! It may help more than you think. Getting my cortef for the adrenal failure has helped with some of my muscle pain.

Also - please get your Vitamin D levels checked, if you haven't done this. Low vit D can cause muscle pain, not just bone problems.

Joan K said...

I've been thinking about death. I have 2 interesting stories. When my father was in his final illness he saw cats as his companions (they weren't there). This was a great comfort to him; he loved cats. When I think of his dying I see him with an honor guard of cats escorting him to the beyond, whatever that is.

My other story is one my grandmother told soon after it happened although she refused to discuss it later. She had tetanus and died several times although they brought her back. I should say my grandmother was a plain-speaking Yankee, very honest and not given to inventing stories. She found herself in a beautifiul field, with wildflowers and horses, at peace and very happy.

I don't know what happens after we die but I have found comfort in both these stories.

Kathz said...

I don't know what to say except that I hope you find a way from the pain to joy in living. You are right to blog this and I wanted you to know that I'm still reading and send love and best wishes.

Cereus Sphinx said...


yanub said...

I wish you joy that would pierce through the pain. If it is at all possible, may it come to you.

Victor Kellar said...

Beth, I have said before that I also don't understand what you are going for but, for whatever reason,this post has resonated with me. No, I don't really truly understand but maybe your reality has a brighter light to me than before .. and god, I'm sorry And I know I've been absent lately but Collette and I are still here, and we care about you, and .. well .. we're still here.

OK, I got your postcard today... it was totally awesome and perfect .. and it's horizontal, so I have space for it in one our "beth" frames. So up on the wall it goes

Raccoon said...

So, a doctor is finally did something more than give lip service!


While I might not know what to say, I'm still here listening.

Add, you are


A Bear in the Woods said...

I'm hardly ever online anymore, so I don't come by as often. But when I read blogs, you're always the first one I read. Because I want to know about you. I think about you often, and I value that you write to us through your pain.

anna said...

I am sorry. Nothing good to say. Nothing reassuring. But thank you for sharing. And...I really hope you will get something from the thyroid medication.

Elizabeth McClung said...

Liz: Thanks and I really hope that as well. REALLY hope that.

Fridawrites: I am sorry that you are stuck on the couch and that you are in the stupid have-to-make it last loop. I had a lot of that when I went to the homeless shelter and all the pharmacies wouldn't fill the refill until like 31 days instead of 4 weeks because......I was an addict, obviously, only addicts went to that shelter. So there were often times I took the afternoon pill and didn't have the evening pill and if they didn't let Linda have the prescription, I had none. Ow. Feel the loving.

I am not quite sure why Fentynal is harder to get in Canada but I expect I will find out in time.

It makes me sad that you are crying because of pain and I don't understand it but I think you are saying it is insurance?

I've found so far there are two solutions to being suicidal from pain, so far I've picked number 2.

CJF: Hi, thank, did you hear me on BBC 4 on pain - it was like 5 or 6 doctors and me. And even the one which had a heart attack and used the 'wrong phrases' used by over 100 of his patients which made him realize he was HAVING a heart attack did not support changing the language or way doctors behave. So if you can get them to listen, that will be a huge leap. Acting isn't a problem, it is just I found out when I came here that the extremely painful gyno treatment of silver nitrate painting hadn't been used for a few decades as a specialist tool. Oops, oh well, at least one of the most sensative areas of the body. Haha. To be fair, I think a good GP clinic with three doctors, they can do minor surgery, take blood and do minor stuff like that, the UK system would be just what I need - well except when they tell me that for my area the waiting list for specialist Q is 4 years (Which isn't a joke, we recieved notification that an appointment was available over a year after I moved).

Sharon: If the GP thinks the patch is a good match and you do too then I am convinced, I just need to figure out how to actually get it.

I have asked for Oncology, and I think as the pain place if I can't get pallative I will ask for oncology. I think it is probably a problem for a GP who can't play the Mix and match game.

Three days pain free! That is really beyond imagining. That would be amazing. I wonder if there is a black market in these patches?

I will definately get the Vitamin D checked as muscle pain is oddly high for reasons I can't understand (is it because I am a vampire?).

Joan: I usually am on a path or have little girls waiting for me in hallways. Odd and the colour is almost always green if I am going to stop breathing entirely, blue if I am going to stop for a long time.

Kathz: Thanks, this is what is. Makes blade work both boring and very much what I wish I was doing instead.

Cereus Sphinx: Thanks!

Elizabeth McClung said...

Yanub: Yes, I wish that I had great joy, becuase I know that pain can drain the color and meaning out of almost anything!

Victor: I not exactly sure what you mean but it is cool, I know that things go on, just like they have been with me. They go on and we have to deal with them.

I am glad you liked the postcard, I remember having to choose between two, so I am wondering which one won!

Raccoon: Yeah, but I had to scout her, and make sure to go when that Doctor was on duty!

But either way, I can find out if I get more energy or not!

And yes, NDY and still planning on using both INDY and doing 5K's just maybe not at the same time.

Bear in the woods: I hope your studies go well, that is a lot of pressure so I wish you the best with that. Thanks; I narrate, it is what I do.

rachelcreative said...

I like what you say about how we talk about pregnancy and the start of life, so we should talk about dying and the end of life too.

I won't repeat what I said to you in emails only to say I welcome being open and dying. About all the bad stuff as well as the good.

It struck me this morning that when people become old, or mentally ill or emotionally crippled - we don't suggest suicide is The Answer. Why assume it should be the answer for your pain?

It's not so hard to understand you want to live. That's how most of us feel every day without having to state it.

I think the synthoid might take quite a lot of soons to start to have an effect. Maybe the end of Otter. And then they may need to adjust the dose to get it right for you. Hoping it will help and offer relief to some symptoms however small or large a relief that may be.

Jill said...

I wish I could say or do anything to make it go away. but anything I say, would be viewed as trite and patronising at best.. I can say I love you and love is forever. I dont know what faith (if any) you follow but if you dont mind Ill pray for you..
I wish you peace and ease..

Kita said...

*gentle hug*

Neil said...

Beth, sweetie, I am still here. I will be here for you until you are not here any more. And when you have left the building, flown away - however you want to say it, you're going to die - I'll be here for Linda if she needs me to be.

We all know we're going to die, but we don't talk about it. It's Not Polite. So I say Screw Polite.

It occurs to me that Dr. Beth McClung would insist on finding a disease that's not the usual fast or slow, polite death. You've always been a bit unusual, so why should you stop now? Okay, I'll stop teasing you now.

I guess I just don't know what to say, Beth. I just want you to know that I'm here, I'm listening, and I'm NOT going away.

Love and zen hugs to both of you and to Cheryl,

FridaWrites said...

I am feeling better today and have an appointment Monday to deal with the breakthrough pain (maybe one more pill a day that I can take if I need and not if I don't). I think I just wasn't keeping enough down.

I wish you had less pain and more Hooch days. My in-laws have a tiny dog (will be 5 lbs when completely grown) they take with them to see their mom.

SharonMV said...

Dear Beth,
I hope you get to see a doctor who will try & help you with pain relief.
I wouldn't go in asking for any specific medicine. Just be sure tell the doctor that the current meds aren't helping enough & describe the level of pain your are having. There are several options out there between what you're taking now & the patch. You need a doctor who deals with chronic illness & pain & who will listen to you.

I've never heard that the patch is so much more powerful. It is strong medicine & there are regulations & rules to be followed here in the US too. It is time-released which is good for severe chronic pain.

I don't know what a pain-free day feels like - don't remember. I have more days when it's tolerable than not. I wish you could get to at least that level & soon.


Elizabeth McClung said...

I have had a particularly poor weekend and a relapse - so with the seizures I have had I managed to partially dislocate my shoulder - which unfortunately is my WRITING arm and I do postcards on Sunday - so it has taken 5 hours instead of 2. But that is just life, you know. I also fell done a few times, and did something so my jaw is out of alignment, I hope that isn't dislocated, and so I am er...not doing so hot, I really hope I get a little better before my 6AM plane ride or there will be an emergency stop. BUT the good news is I finished the post cards including some people that I really wanted to keep my word to on sending something to them.

Sharon: I am sort of glad, the club of people who can't remember a pain-free day. What a horrid thing to be happy at least I am not alone!

I would like to hear the options it is just with a doctor who WANTS to use the patch, I feel that will be easier to maintain in terms of blood tests and refills. But I am also interested in the options -the worse would be a doctor who doesn't know or want to know that I am not absorbing things orally as much and just acts like I am a fibro or other patient and never looks at ME, and my disease.

Rachel: why do you always say things that sounds so brilliant, I basically stole not only many of your lines but part of our conversation but then you do better. This is why I like to talk to you. You are right, we do not talk about options like we do about pregnancy or preparing for pregnancy and what people can do it is just DEATH or SUICIDE and that is it. Or the BUCKET LIST if you know a billionaire (if you do, can you send them my way?)

I also agree that why do I have to STATE I want to live in order to be allowed to do so - Cheryl says I live because I am too willful to die - or is that Linda, I say I am alive because I have good friends that help me when I am stupid and would likely die or suffocate as happened this weekend. It turns out waking up when I am too weak to open my lungs and suffocating is a REALLY sucky experience and makes even a few seconds or 20 seem like forever of trying to scream, to communicate, to do anything.

I had an odd experience as my right lower leg exploded in contraction WHILE I was sleeping, I awoke with a huge SCREAM, then the pain made me pass out, and I woke to scream again and find Linda working on my leg. a few rips on those muscles. I hope this doesn't happen in EVERY muscle group or mean they are dying, that would suck too!

Jill: Thank you so much, I would like prayers because I have to think that I have been ironic so long God thinks this is funny so if someone else says it isn't, maybe the message will get through.

Frida: I am glad you are recovered enough to write and off the couch - pain is the pits, for anyone, I would not wish it on an enemy. But then, sometimes when people who know no pain think you are a lazy ass liar as no one could REALLY feel that - well, there is this certain urge to mutter, "Be careful what you wish for, or taunt" - as those are the people who once they REALLY feel that - never hassle people again (too bad most of them are P.E. teachers first!).

Maija Haavisto said...

There are some medications that can be used to boost the efficacy of narcotic painkillers. Some of them are even OTC in many countries. I don't know if you could take any of these meds because of the complexity of your condition or because they might interact with your other medications, but it's something to look into.

The opioid boosting meds include methylphenidate (Ritalin); amphetamines; NMDA antagonists like dextromethorphan (Robitussin), amantadine (Symmetrel) and memantine (Namenda); antihistamines (especially Benadryl) and ranitidine (Zantac)/cimetidine (Tagamet). Most of these drugs probably aren't viable options, but some of them could be.

Queen Slug said...

I hope the pain clinic can get you in sooner than moths, but I also know that they have waiting lists & that is often how it goes. Try what ever they have to offer, better to be dependent (addicted & dependent are different, dependent is physical addicted is physiological) on a med than in agony. While it is true you may (& probably will) max out a pain med they can mix & match stuff to potentiate the effects.

smush said...


This post was very painful to read, not physically but emotionally I felt terrified for you. I have a huge fear towards physical pain and so as I got up to that point where you were describing the pain, I thought to stop reading. But then I thought, I shouldn't. This person has something to say to the world and she needs people to hear her out. I admire your strength to continue living and your postcard project. Know that your postcards DO mean a lot of people and your life means a great deal.

Your story and plight has reinforced my feelings about becoming a doctor. I have anxiety issues and that has deteriorated my confidence but after reading through your blog, and crying through some of your entries, I felt my will and reasoning come back to me.

I do agree with you on the death part. No one can blame you for wanting to die. I know that if I was in your place, I'd want to end my life as well. The pain you endure is so infinite, I cannot say anything. And since it sounds selfish of me to just write, "please continue to live!", I'll say this: Stay strong. Your efforts are not wasted.