(no subject)
Every time I open up a notepad to write I feel like we're at this awkward dry spell in our relationship where I'm trying to initiate sex after like three months of virtually no contact and can't remember how to seduce someone anymore. Except instead of a person I'm trying to seduce words onto a white screen.
It isn't that I don't have a million things to write about, it's that I feel like I can't express anything - like I've stopped myself up and I can't just relax and get into it. I just need some sort of writing joint, or something.
I spent a good part of this year dipping dangerously close to depression for the first time in a very, very long time and it was absolutely terrifying for me. In the past, my therapy was writing and it was a wonderful thing for me, but for some reason I couldn't write through this… maybe because it didn't really have a "reason" the way the other depression did. It was just depression for the sake of depression; and that always feels so selfish and weirdly comfortable. To write through it is to be indulgent, and instead of letting it go I felt myself wrapping everything up and holding it all very close to my chest. It took every ounce of strength in me just to talk it through with Curtis and admit that I needed his support to see myself through the other side.
And in the end it wasn't even that bad or that long. It was fleeting and ambiguous by comparison to the depths of crisis I've felt at other times in my life. There was a certain level of embarrassment that came along with feeling that incapacitated by what amounts to practically nothing.
I feel happier today. I feel stable most of the time, and it's been many months since I've slipped out of bed while Curtis slept so my crying would not wake him… but long after you've freed yourself from the web there always seems to be a mess of tiny little strings left on your skin that snap and break as you walk away; and they remind you that you haven't been free as long as you think you have. The vulnerability that comes with it continues to remind you of how close you came to being lost. I do not feel as strong as I was before, and in the wake of a Crisis of Nothing the things that I could easily brush off before are chewing through my skin.
I worry about how to not piss off our insane landlady while she vindictively refuses to complete any repairs or answer maintenance calls for the house, even with issues that are now bordering on health hazards (ie. non working plumbing in the upstairs for almost a year, windows that cannot be opened).
I worry about trying to find another home "in time" before her raise of the rent kicks in. We live in a nice area, but just on the border so our rent price is extremely low for the area (but average for the city) - looking even a block or so in from where we are and the prices raise by hundreds and hundreds of dollars, for less space and more restrictions. But the further away we go from the area the more money we'll spend on commuting, and our gas prices are among the highest in the country (and far higher than the USA) so finding a balance is difficult.
I spend far, far too many hours thinking about my sister; wishing she were a bigger person instead of someone who can so easily throw valuable things away. A comment she made about something I felt was pretty wonderful eventually made its way back to my ears and I was so hurt. It continues to baffle me how unattached she seems to be, and in turn it makes my level of attachment to her to seem completely ridiculous.
I worry about Curtis' family, and if they'll ever come around… even though he has long given up on them. He hasn't needed his parents love in a very long time, so it's a little confusing for me that I seem to. At the same time, I'm furious with them for throwing us away like trash. For throwing our children away for the sake some ridiculously petty argument, in spite of Curtis' repeated attempts to open conversation and have frank discussions with his mother. Email after unanswered email is lost into the vacuum, and I can't tell if I'm more awed or disturbed by Curtis' inability to be hurt by it all.
I worry about whether or not I've failed as a mother and a care-giver because of the fact that I've yelled at my kids today… or they've screamed too loudly while outside and one of the neighbours came out to glower at us in a menacing way for several minutes while I talked to them about how inappropriate their volume and level of craziness is. I worry every single day that I've seriously fucked them up somehow by not being the caliber of parent that everyone else seems to be.
The thing about struggling with anxiety is that these things are always there, but when you're stable and strong you can keep them at bay or only allow them to come out when you're capable of addressing the issues properly… but when you're weakened, it slips into everything you do. Every moment of insomnia, every quiet moment while washing dishes, every weak moment where you start losing your temper and want to break down crying.
At the very least, the coming of summer and hot, beautiful sunshine has improved my mood. I try to be outside at least a little bit every day and it really is the best medicine. When it's hot and beautiful and we're out doing things, I feel revitalized; better equipped to deal with the anxiety, and all the shit just fades away. As the weather slowly starts to change and the clouds come back, so to does the feeling that this will never get any better and there's really no hope for anything to change until Z is old enough to attend kindergarten and I may have a realistic chance at a full time job. But then, with that, comes the reality that finding a job while disabled and my condition deteriorating is… not exactly the best prospect. I keep trying to find the time and the motivation to contact the disability resource centre, if for no other reason than finding someone to talk to. It would be nice if there was some sort of support group for parents with disabilities, or a childcare exchange or something, just among others who understand what the limitations are.
There's this stupidly frustrating catch-22 I face right now where the more I'm outside doing shit the better I feel emotionally but the worse I feel physically (and the more I do, the longer lasting the down-time needs to be), but the less I do the worse I feel emotionally even though my physical condition is stable enough to actually do shit I need to do like cook and clean. Over the last six months my pain levels have increased more than they have in the last three years combined, and if I don't want to just have my specialist just keep upping my dose (which I don't - it will just lead to increased tolerance which means it will eventually stop working) I have to find some sort of alternative.
Everyone, even my mother and father, have encouraged me to ask my doctor about getting a 'green card' (for medical marijuana). The stupid part is that despite the fact that I'm extremely against prohibition, very supportive of utilizing marijuana for medicinal purposes (or hell, recreational if that's your style); and even though I know it's a safer and often more effective alternative to adding more pills into my daily diet, I just can't get myself past that mental block of "omg drugs". I had a long conversation about it with a friend last night, and we talked about how ridiculous it is that as a culture we're more accepting of the idea of drinking large amounts of alcohol for pain relief than we are to the idea of picking up a joint or "magic" brownie. And I mean really the worst my specialist can do is say no, yet I feel this weird amount of guilt over the idea of even bringing it up or thinking about it like I've somehow tainted my good standing with him. Really, this is not the kind of thing I want to teach my kids. This isn't even what my mom taught me. This is just culture and school and the horrible D.A.R.E-style brainwashing of the 80's at work. THANKS, OBAMA.
So, Operation: Control The Symptoms of My Disease Effectively, continues to trudge on.
So much has happened over the last month and a half to two months of not writing at all that I can't even begin to catch up on all of it. It's kind of a swirling mass of ups and downs and various things. Some of the highlights include:
My mom had surgery a few weeks ago. She received a gastric sleeve. This is an operation five years in the making. For some context in case new people don't know: she and I have the same disease, take the same medications (though her doses are approximately 2-3x what I take), but hers has progressed significantly further than mine has. Hers was initially discovered at a far worse state of degeneration, and by that point she was at risk of total paralysis without surgery. Large sections of her spine were replaced with metal rods, and she spent almost two years in bed recovering, not knowing if she'd ever walk again. It saved her mobility, kinda, but the degeneration of nerve and tissue by the metal implants continues to cause pain. She gained weight during her two year recovery, leading to diabetes, and a number of other problems came along over the next years that may or may not be related to AS. At this point her mobility is completely shot, and she suffers from extreme levels of all-over pain from polymyalgia. She uses a mobility scooter for almost everything, and a walker for very short distances (but cannot use the walker for more than about 10-12 steps without the pain being so overwhelming that she has to sit and rest). She brought up the idea of gastric surgery to her doctor years ago in hopes that weight loss could improve her symptoms, and pain levels, since she's completely unable to exercise or even attend any sort of effective therapy due to cost/mobility restrictions.
She's spent over five years now in support groups, with nutritionists and dietary planners, meeting with doctors over and over and over as she prepared… and she finally got a date for her surgery in late July and received it just two weeks later. She stayed in hospital for a few days due to her apnea (observation), and was supposed to be released about three days after surgery. Unfortunately, she encountered the most ridiculous clusterfuck following her blood sugar dropping on the day of her supposed release.
What happened with mom is they kept fucking around with her medication dosages and schedules, then acting really surprised when her body went haywire as a result. I don't understand why the hospitals can't trust that chronic pain patients actually know their medication schedule and won't stop ASSURING YOU that they actually know everything better? Seriously, why? This happens to her, and me, whenever we go in for any fucking reason. Or any other chronic pain patient I've ever talked to, for that matter.
They cut her daily med dosage down to 1/4 of her normal without warning or explanation, and then offered her buckets upon buckets of dilaudid (which she refused) explaining that, "It's 10x more powerful than morphine so you'll be fine!".
She's spent 15+ years locked in a trial by fire with pain control and medications, and her med schedule is stable and hasn't been changed in about 7 years - stop fucking with it for no reason. It's the way it is because it WORKS FOR HER and that's what SHE ACTUALLY NEEDS. JESUS WTF.
Throughout this, they didn't even give her any reason - not even a half-assed one like, "Oh it's having problems or conflicts". All they'd say in response to her probing was, 'we don't like that'. We simply don't like it when patients take pain medication for years because that's what they have to do.
So, inevitably she begins to suffer as she enters withdrawal (any med you take regularly, including anti-depressants, will cause you to suffer when taken off cold turkey for no fucking reason) then her blood sugar crashes, just like she told them it would, and they can't get her stabilized because they kept trying to give her shit by mouth. BY MOUTH.
A patient recovering from a gastric surgery.
Unfamiliar pills. That she doesn't even want, or need. By mouth. Each the size of a quarter. Six of them at a damn time.
Then they act incredibly shocked when she kept throwing them up what she could keep down wasn't actually helping. As a result of this clusterfuck it took roughly six hours to stabilize her, rather than the 20 minutes it would have been if they'd just given her a goddamn shot or put her back on her regular dose of her normal meds. She was miserable, frustrated and exhausted. After more fighting, she finally she told them that if they didn't give her her normal meds at her normal dose, she's going to end up in much worse shape and will just walk out of the hospital the next day.
The nurse flat-out told her, "You're not allowed to do that."
"Yes, I can. I know my rights. If you can't stop fucking up my meds I'm going to have to go home just so I can actually take the required dose my doctor has told me I need to take."
And the nurse left the room, and no one offered to help her out, and so the next day she did precisely that: checked herself out AMA so she could take her normal medications… and immediately recovered from all her problems, and felt fine.
Seriously I just can't with hospitals and pain patients. Every time I talk about this kind of shit I get two camps of replies, the first is "omg me too" from everyone who has chronic conditions or pain (or a child with those problems)… the next is, "That never happens to me/anyone I know so they/you probably brought it on herself".
Try having a complicated, chronic condition sometime and then be admitted to the hospital for a reason unrelated to that. Trust me, it's not exactly a walk in the park. And this bullshit is exactly why. Ugh.
It's been a few weeks since that, and she's doing really well. At this point she's still on a largely liquids-only diet, but has managed to get on top of her nausea and vomiting pretty quickly… though she says she's horribly bored with the soups.
A reader recommended a blog called [ "The World According To Eggface" ], which I've been browsing through over the last week or so and it's really freaking awesome. I'm going to print out a number of her entries, recipes and ideas to give to my mom because it's an amazing resource for anyone who has had gastric surgery - both in terms of recipes and ideas, as well as emotional support.
Mom also said she's totally open to me sharing her progress pictures on my blog in hopes that it might help someone else. She's 66 years old, and at roughly 5' tall her starting weight was 252lbs when she was first admitted to the hospital. Yesterday when I visited her, she was at 227lbs and her face and stomach are already looking thinner. I haven't yet pulled the images off the little camera, but I will post them in a photo entry that I'll put up shortly.
The other major development is that Curtis' father finally figured out how to use email. So that was fun.
Curtis went back and forth with him for two days in hopes it would get better before finally showing me all the emails in frustration. Essentially almost two years of family exile is mostly because Curtis used the "f word" on the phone once.
They honestly seem to have no fucking clue. Just... none.
One of the most frustrating elements for Curtis is that he's been sending regular updates, emails, phone calls and birthday wishes all this time (with no response) trying to open up opportunities for conversation… and it's like they all disappear into a vacuum. Sometimes his mom would respond directly to the email (meaning it's tacked onto the bottom) with a short, bullet-point update on how her knee hurt that day or his great uncle got sick and then got better… and he'd always respond back and try to open up an actual conversation about it. But that too would just disappear because no one else was making even the slightest effort to actually open up.
And with all that in mind, his dad actually tried to claim that Curtis had sent no emails because he's a bad son. This kind of shit is so typical of them, the "I accidentally forgot because it will help me win an argument" bullshit they've been doing forever. So that evening Curtis spent 20 minutes re-forwarding the dozens of emails he's sent over these last nearly-two-years - including one short-lived cordial conversation between his mother and him that referenced past emails. Following the mass forward, he somehow avoided adding a "SO THERE, MOTHERFUCKER" at the end. Which is what I probably would have done.
The response? Nothing. He didn't even acknowledge that Curtis had sent all of them.
When Curtis tried to clarify that our family's limitations were what made travel difficult, which is what prompted this entire crap to begin, his father accused him of making up stories or hiding behind his kids. Then he went on a long 'bootstraps' rant before eventually pulling into a completely random stop about how angry he was that we all didn't come down for Psycho Grandma's funeral years ago because, "Don't you know death is inconvenient?".
It was then, and only then, that Curtis actually lost his temper and was the most firm he'd ever been in the email exchange when he said: "Don't ever tell me death is inconvenient. I held my dying son in my arms and not one of you even offered to help in any way, no phone calls, no birthday recognition the years after, no one checked in on us or offered support following the first few days, nothing. Don't you tell me death is inconvenient: I know."
It's also worth pointing out that this woman whose funeral Curtis apparently snubbed openly and unapologetically hated us. For real. Still, Curtis had actually offered to come down, but expressed worry over our finances and his tentative new job - and his mother had said she'd understood and assured him it wasn't necessary because many people weren't able to come on such short notice.
That was about the worst Curtis got as far as coming away from good communication skills. His dad completely ignored it, and just kept goading him until eventually he gave him an all-caps rant about what an "ASHOLE" he'd become, how they'd never again give gifts to our children, and to never contact him again if he was going to "be like this" (without any real explanation of what 'like this' meant. I mean Curtis even apologized repeatedly for various things). It's sad because he tried really, really fucking hard and it just went absolutely nowhere.
When I read through all of Curtis' emails I told him that I've never in my life seen him speak that eloquently and calmly to his parents... and I'm not sure if it's a good thing or a bad thing, because he just sounds so disconnected from it all. So far outside of it that he can actually speak with objectivity. I don't think he has any love left for them.
I mean 11 years of weekly phone calls from Curtis with constant updates on our family, the discovery of my disease and its degeneration, Tempest's trials through diagnosis and the hardship of raising a child with an invisible illness, Xan's bullying, Zephyra's feeding problems... I mean even my fucking cane was literally sent through them to save on shipping, and at that time it opened up YET ANOTHER conversation about why I needed a cane at all, and they still have the audacity to claim that Curtis' bringing up our family's limitations in a recent reply is "spinning stories to avoid blame". The last time he mentioned it, his father literally laughed over the phone and said, "What disability? What are you talking about?".
I just fucking can't.
For a while we even had a fucking newsletter going to them, just to them, that I personally wrote for years that held nothing but updates on that kind of shit. Apparently no one ever read it, or if they did, they didn't care enough about the information about their only grandchildren to actually absorb it.
This kind of crap isn't even isolated to just his parents, it's his entire family. When Curtis' aunt went all psycho a few months ago and sent him a series of nasty emails about what a horrible son he is, she claimed that we must be making all this shit up because, "your family looks so nice in the pictures". I AM NOT EVEN FUCKING KIDDING.
They make me so angry and hurt that I I literally sat in the car on one of the days of these exchanges and practiced what I would say to them in a confrontation. Out loud. FOR HALF AN HOUR. And I can't even hope to be a tenth as calm as he is when talking to them. And he's actually lived his whole fucking life with these people.
After all of this, we decided to give the most recent gift cards to the children back to them with a long letter that very calmly and carefully outlined how upsetting this whole thing is. I'm sick and tired of them treating our children like little posable dolls they can play with at will. It isn't grandparenting if all you do is throw $25 at them 1-2 times a year, and don't give a shit about their unique personalities, challenges, wants, hopes, dreams, ideas… or even bother to try to find out who they are. That's not family: that's bullshit.
I went to visit my mom after this happened and talked to her about it, and she is continually appalled by their behaviour.
"My grandkids are the best thing in my life now. They are my life now. They're all so different, and unique, and wonderful, and I can't imagine not having them here with me. I'd do anything for them… and I don't understand why they don't feel the same way."
Amen to that, mom.
Links of the Day:
Seduced by the illusion - A (male) fitness blogger shows how a few lighting tweaks, a close shave and a bit of sucking in can easily manipulate fitness or dieting 'progress' photos to portray something reality does not. No photoshop required! (hat tip to Poppy)
11 things that took me 42 years to learn - A short, sweet list of life lessons that everyone can use.
"Embarrassed" - A powerful spoken-word poem about breastfeeding in public and the culture of shame that surrounds it. Poet Hollie McNish delivers this amazing piece straight up against a black background in front of a camera, and it really is spectacular.
10 Things I plan to tell my daughter about sex (that aren't about that purity movement crap) - A truly wonderful, short article about addressing sex in a realistic and supportive, body-positive way with your daughters.
Nothing to prove, by the Geek Girls & The Doubleclicks - A music video featuring geek girls being awesome. For best results, share with your favourite geek.
An open apology to all my weight loss clients - From a former weight loss consultant of a 'popular weight loss company'.
It isn't that I don't have a million things to write about, it's that I feel like I can't express anything - like I've stopped myself up and I can't just relax and get into it. I just need some sort of writing joint, or something.
I spent a good part of this year dipping dangerously close to depression for the first time in a very, very long time and it was absolutely terrifying for me. In the past, my therapy was writing and it was a wonderful thing for me, but for some reason I couldn't write through this… maybe because it didn't really have a "reason" the way the other depression did. It was just depression for the sake of depression; and that always feels so selfish and weirdly comfortable. To write through it is to be indulgent, and instead of letting it go I felt myself wrapping everything up and holding it all very close to my chest. It took every ounce of strength in me just to talk it through with Curtis and admit that I needed his support to see myself through the other side.
And in the end it wasn't even that bad or that long. It was fleeting and ambiguous by comparison to the depths of crisis I've felt at other times in my life. There was a certain level of embarrassment that came along with feeling that incapacitated by what amounts to practically nothing.
I feel happier today. I feel stable most of the time, and it's been many months since I've slipped out of bed while Curtis slept so my crying would not wake him… but long after you've freed yourself from the web there always seems to be a mess of tiny little strings left on your skin that snap and break as you walk away; and they remind you that you haven't been free as long as you think you have. The vulnerability that comes with it continues to remind you of how close you came to being lost. I do not feel as strong as I was before, and in the wake of a Crisis of Nothing the things that I could easily brush off before are chewing through my skin.
I worry about how to not piss off our insane landlady while she vindictively refuses to complete any repairs or answer maintenance calls for the house, even with issues that are now bordering on health hazards (ie. non working plumbing in the upstairs for almost a year, windows that cannot be opened).
I worry about trying to find another home "in time" before her raise of the rent kicks in. We live in a nice area, but just on the border so our rent price is extremely low for the area (but average for the city) - looking even a block or so in from where we are and the prices raise by hundreds and hundreds of dollars, for less space and more restrictions. But the further away we go from the area the more money we'll spend on commuting, and our gas prices are among the highest in the country (and far higher than the USA) so finding a balance is difficult.
I spend far, far too many hours thinking about my sister; wishing she were a bigger person instead of someone who can so easily throw valuable things away. A comment she made about something I felt was pretty wonderful eventually made its way back to my ears and I was so hurt. It continues to baffle me how unattached she seems to be, and in turn it makes my level of attachment to her to seem completely ridiculous.
I worry about Curtis' family, and if they'll ever come around… even though he has long given up on them. He hasn't needed his parents love in a very long time, so it's a little confusing for me that I seem to. At the same time, I'm furious with them for throwing us away like trash. For throwing our children away for the sake some ridiculously petty argument, in spite of Curtis' repeated attempts to open conversation and have frank discussions with his mother. Email after unanswered email is lost into the vacuum, and I can't tell if I'm more awed or disturbed by Curtis' inability to be hurt by it all.
I worry about whether or not I've failed as a mother and a care-giver because of the fact that I've yelled at my kids today… or they've screamed too loudly while outside and one of the neighbours came out to glower at us in a menacing way for several minutes while I talked to them about how inappropriate their volume and level of craziness is. I worry every single day that I've seriously fucked them up somehow by not being the caliber of parent that everyone else seems to be.
The thing about struggling with anxiety is that these things are always there, but when you're stable and strong you can keep them at bay or only allow them to come out when you're capable of addressing the issues properly… but when you're weakened, it slips into everything you do. Every moment of insomnia, every quiet moment while washing dishes, every weak moment where you start losing your temper and want to break down crying.
At the very least, the coming of summer and hot, beautiful sunshine has improved my mood. I try to be outside at least a little bit every day and it really is the best medicine. When it's hot and beautiful and we're out doing things, I feel revitalized; better equipped to deal with the anxiety, and all the shit just fades away. As the weather slowly starts to change and the clouds come back, so to does the feeling that this will never get any better and there's really no hope for anything to change until Z is old enough to attend kindergarten and I may have a realistic chance at a full time job. But then, with that, comes the reality that finding a job while disabled and my condition deteriorating is… not exactly the best prospect. I keep trying to find the time and the motivation to contact the disability resource centre, if for no other reason than finding someone to talk to. It would be nice if there was some sort of support group for parents with disabilities, or a childcare exchange or something, just among others who understand what the limitations are.
There's this stupidly frustrating catch-22 I face right now where the more I'm outside doing shit the better I feel emotionally but the worse I feel physically (and the more I do, the longer lasting the down-time needs to be), but the less I do the worse I feel emotionally even though my physical condition is stable enough to actually do shit I need to do like cook and clean. Over the last six months my pain levels have increased more than they have in the last three years combined, and if I don't want to just have my specialist just keep upping my dose (which I don't - it will just lead to increased tolerance which means it will eventually stop working) I have to find some sort of alternative.
Everyone, even my mother and father, have encouraged me to ask my doctor about getting a 'green card' (for medical marijuana). The stupid part is that despite the fact that I'm extremely against prohibition, very supportive of utilizing marijuana for medicinal purposes (or hell, recreational if that's your style); and even though I know it's a safer and often more effective alternative to adding more pills into my daily diet, I just can't get myself past that mental block of "omg drugs". I had a long conversation about it with a friend last night, and we talked about how ridiculous it is that as a culture we're more accepting of the idea of drinking large amounts of alcohol for pain relief than we are to the idea of picking up a joint or "magic" brownie. And I mean really the worst my specialist can do is say no, yet I feel this weird amount of guilt over the idea of even bringing it up or thinking about it like I've somehow tainted my good standing with him. Really, this is not the kind of thing I want to teach my kids. This isn't even what my mom taught me. This is just culture and school and the horrible D.A.R.E-style brainwashing of the 80's at work. THANKS, OBAMA.
So, Operation: Control The Symptoms of My Disease Effectively, continues to trudge on.
So much has happened over the last month and a half to two months of not writing at all that I can't even begin to catch up on all of it. It's kind of a swirling mass of ups and downs and various things. Some of the highlights include:
My mom had surgery a few weeks ago. She received a gastric sleeve. This is an operation five years in the making. For some context in case new people don't know: she and I have the same disease, take the same medications (though her doses are approximately 2-3x what I take), but hers has progressed significantly further than mine has. Hers was initially discovered at a far worse state of degeneration, and by that point she was at risk of total paralysis without surgery. Large sections of her spine were replaced with metal rods, and she spent almost two years in bed recovering, not knowing if she'd ever walk again. It saved her mobility, kinda, but the degeneration of nerve and tissue by the metal implants continues to cause pain. She gained weight during her two year recovery, leading to diabetes, and a number of other problems came along over the next years that may or may not be related to AS. At this point her mobility is completely shot, and she suffers from extreme levels of all-over pain from polymyalgia. She uses a mobility scooter for almost everything, and a walker for very short distances (but cannot use the walker for more than about 10-12 steps without the pain being so overwhelming that she has to sit and rest). She brought up the idea of gastric surgery to her doctor years ago in hopes that weight loss could improve her symptoms, and pain levels, since she's completely unable to exercise or even attend any sort of effective therapy due to cost/mobility restrictions.
She's spent over five years now in support groups, with nutritionists and dietary planners, meeting with doctors over and over and over as she prepared… and she finally got a date for her surgery in late July and received it just two weeks later. She stayed in hospital for a few days due to her apnea (observation), and was supposed to be released about three days after surgery. Unfortunately, she encountered the most ridiculous clusterfuck following her blood sugar dropping on the day of her supposed release.
What happened with mom is they kept fucking around with her medication dosages and schedules, then acting really surprised when her body went haywire as a result. I don't understand why the hospitals can't trust that chronic pain patients actually know their medication schedule and won't stop ASSURING YOU that they actually know everything better? Seriously, why? This happens to her, and me, whenever we go in for any fucking reason. Or any other chronic pain patient I've ever talked to, for that matter.
They cut her daily med dosage down to 1/4 of her normal without warning or explanation, and then offered her buckets upon buckets of dilaudid (which she refused) explaining that, "It's 10x more powerful than morphine so you'll be fine!".
She's spent 15+ years locked in a trial by fire with pain control and medications, and her med schedule is stable and hasn't been changed in about 7 years - stop fucking with it for no reason. It's the way it is because it WORKS FOR HER and that's what SHE ACTUALLY NEEDS. JESUS WTF.
Throughout this, they didn't even give her any reason - not even a half-assed one like, "Oh it's having problems or conflicts". All they'd say in response to her probing was, 'we don't like that'. We simply don't like it when patients take pain medication for years because that's what they have to do.
So, inevitably she begins to suffer as she enters withdrawal (any med you take regularly, including anti-depressants, will cause you to suffer when taken off cold turkey for no fucking reason) then her blood sugar crashes, just like she told them it would, and they can't get her stabilized because they kept trying to give her shit by mouth. BY MOUTH.
A patient recovering from a gastric surgery.
Unfamiliar pills. That she doesn't even want, or need. By mouth. Each the size of a quarter. Six of them at a damn time.
Then they act incredibly shocked when she kept throwing them up what she could keep down wasn't actually helping. As a result of this clusterfuck it took roughly six hours to stabilize her, rather than the 20 minutes it would have been if they'd just given her a goddamn shot or put her back on her regular dose of her normal meds. She was miserable, frustrated and exhausted. After more fighting, she finally she told them that if they didn't give her her normal meds at her normal dose, she's going to end up in much worse shape and will just walk out of the hospital the next day.
The nurse flat-out told her, "You're not allowed to do that."
"Yes, I can. I know my rights. If you can't stop fucking up my meds I'm going to have to go home just so I can actually take the required dose my doctor has told me I need to take."
And the nurse left the room, and no one offered to help her out, and so the next day she did precisely that: checked herself out AMA so she could take her normal medications… and immediately recovered from all her problems, and felt fine.
Seriously I just can't with hospitals and pain patients. Every time I talk about this kind of shit I get two camps of replies, the first is "omg me too" from everyone who has chronic conditions or pain (or a child with those problems)… the next is, "That never happens to me/anyone I know so they/you probably brought it on herself".
Try having a complicated, chronic condition sometime and then be admitted to the hospital for a reason unrelated to that. Trust me, it's not exactly a walk in the park. And this bullshit is exactly why. Ugh.
It's been a few weeks since that, and she's doing really well. At this point she's still on a largely liquids-only diet, but has managed to get on top of her nausea and vomiting pretty quickly… though she says she's horribly bored with the soups.
A reader recommended a blog called [ "The World According To Eggface" ], which I've been browsing through over the last week or so and it's really freaking awesome. I'm going to print out a number of her entries, recipes and ideas to give to my mom because it's an amazing resource for anyone who has had gastric surgery - both in terms of recipes and ideas, as well as emotional support.
Mom also said she's totally open to me sharing her progress pictures on my blog in hopes that it might help someone else. She's 66 years old, and at roughly 5' tall her starting weight was 252lbs when she was first admitted to the hospital. Yesterday when I visited her, she was at 227lbs and her face and stomach are already looking thinner. I haven't yet pulled the images off the little camera, but I will post them in a photo entry that I'll put up shortly.
The other major development is that Curtis' father finally figured out how to use email. So that was fun.
Curtis went back and forth with him for two days in hopes it would get better before finally showing me all the emails in frustration. Essentially almost two years of family exile is mostly because Curtis used the "f word" on the phone once.
They honestly seem to have no fucking clue. Just... none.
One of the most frustrating elements for Curtis is that he's been sending regular updates, emails, phone calls and birthday wishes all this time (with no response) trying to open up opportunities for conversation… and it's like they all disappear into a vacuum. Sometimes his mom would respond directly to the email (meaning it's tacked onto the bottom) with a short, bullet-point update on how her knee hurt that day or his great uncle got sick and then got better… and he'd always respond back and try to open up an actual conversation about it. But that too would just disappear because no one else was making even the slightest effort to actually open up.
And with all that in mind, his dad actually tried to claim that Curtis had sent no emails because he's a bad son. This kind of shit is so typical of them, the "I accidentally forgot because it will help me win an argument" bullshit they've been doing forever. So that evening Curtis spent 20 minutes re-forwarding the dozens of emails he's sent over these last nearly-two-years - including one short-lived cordial conversation between his mother and him that referenced past emails. Following the mass forward, he somehow avoided adding a "SO THERE, MOTHERFUCKER" at the end. Which is what I probably would have done.
The response? Nothing. He didn't even acknowledge that Curtis had sent all of them.
When Curtis tried to clarify that our family's limitations were what made travel difficult, which is what prompted this entire crap to begin, his father accused him of making up stories or hiding behind his kids. Then he went on a long 'bootstraps' rant before eventually pulling into a completely random stop about how angry he was that we all didn't come down for Psycho Grandma's funeral years ago because, "Don't you know death is inconvenient?".
It was then, and only then, that Curtis actually lost his temper and was the most firm he'd ever been in the email exchange when he said: "Don't ever tell me death is inconvenient. I held my dying son in my arms and not one of you even offered to help in any way, no phone calls, no birthday recognition the years after, no one checked in on us or offered support following the first few days, nothing. Don't you tell me death is inconvenient: I know."
It's also worth pointing out that this woman whose funeral Curtis apparently snubbed openly and unapologetically hated us. For real. Still, Curtis had actually offered to come down, but expressed worry over our finances and his tentative new job - and his mother had said she'd understood and assured him it wasn't necessary because many people weren't able to come on such short notice.
That was about the worst Curtis got as far as coming away from good communication skills. His dad completely ignored it, and just kept goading him until eventually he gave him an all-caps rant about what an "ASHOLE" he'd become, how they'd never again give gifts to our children, and to never contact him again if he was going to "be like this" (without any real explanation of what 'like this' meant. I mean Curtis even apologized repeatedly for various things). It's sad because he tried really, really fucking hard and it just went absolutely nowhere.
When I read through all of Curtis' emails I told him that I've never in my life seen him speak that eloquently and calmly to his parents... and I'm not sure if it's a good thing or a bad thing, because he just sounds so disconnected from it all. So far outside of it that he can actually speak with objectivity. I don't think he has any love left for them.
I mean 11 years of weekly phone calls from Curtis with constant updates on our family, the discovery of my disease and its degeneration, Tempest's trials through diagnosis and the hardship of raising a child with an invisible illness, Xan's bullying, Zephyra's feeding problems... I mean even my fucking cane was literally sent through them to save on shipping, and at that time it opened up YET ANOTHER conversation about why I needed a cane at all, and they still have the audacity to claim that Curtis' bringing up our family's limitations in a recent reply is "spinning stories to avoid blame". The last time he mentioned it, his father literally laughed over the phone and said, "What disability? What are you talking about?".
I just fucking can't.
For a while we even had a fucking newsletter going to them, just to them, that I personally wrote for years that held nothing but updates on that kind of shit. Apparently no one ever read it, or if they did, they didn't care enough about the information about their only grandchildren to actually absorb it.
This kind of crap isn't even isolated to just his parents, it's his entire family. When Curtis' aunt went all psycho a few months ago and sent him a series of nasty emails about what a horrible son he is, she claimed that we must be making all this shit up because, "your family looks so nice in the pictures". I AM NOT EVEN FUCKING KIDDING.
They make me so angry and hurt that I I literally sat in the car on one of the days of these exchanges and practiced what I would say to them in a confrontation. Out loud. FOR HALF AN HOUR. And I can't even hope to be a tenth as calm as he is when talking to them. And he's actually lived his whole fucking life with these people.
After all of this, we decided to give the most recent gift cards to the children back to them with a long letter that very calmly and carefully outlined how upsetting this whole thing is. I'm sick and tired of them treating our children like little posable dolls they can play with at will. It isn't grandparenting if all you do is throw $25 at them 1-2 times a year, and don't give a shit about their unique personalities, challenges, wants, hopes, dreams, ideas… or even bother to try to find out who they are. That's not family: that's bullshit.
I went to visit my mom after this happened and talked to her about it, and she is continually appalled by their behaviour.
"My grandkids are the best thing in my life now. They are my life now. They're all so different, and unique, and wonderful, and I can't imagine not having them here with me. I'd do anything for them… and I don't understand why they don't feel the same way."
Amen to that, mom.
Links of the Day:
Seduced by the illusion - A (male) fitness blogger shows how a few lighting tweaks, a close shave and a bit of sucking in can easily manipulate fitness or dieting 'progress' photos to portray something reality does not. No photoshop required! (hat tip to Poppy)
11 things that took me 42 years to learn - A short, sweet list of life lessons that everyone can use.
"Embarrassed" - A powerful spoken-word poem about breastfeeding in public and the culture of shame that surrounds it. Poet Hollie McNish delivers this amazing piece straight up against a black background in front of a camera, and it really is spectacular.
10 Things I plan to tell my daughter about sex (that aren't about that purity movement crap) - A truly wonderful, short article about addressing sex in a realistic and supportive, body-positive way with your daughters.
Nothing to prove, by the Geek Girls & The Doubleclicks - A music video featuring geek girls being awesome. For best results, share with your favourite geek.
An open apology to all my weight loss clients - From a former weight loss consultant of a 'popular weight loss company'.