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 company...it 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 say....it 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.
4 hours ago