Random reason I love my girlfriend #7342:
So I have really weird, unpopular opinions are George W. Bush, and she was literally the only person in real life that I know that I felt comfortable sharing them with, because whenever I’ve told anyone (pro or anti Bush), they get really mad. But when he randomly came up one night while driving on our roadtrip, I explained my side and not only did she not get pissed, it turned out that she thought exactly the same thing. And I think that’s pretty cool, because I’m afraid of sharing most of my opinions with most of my friends here in Missoula.
chef-dingobrawler said: Oh you’ll know when it happens cos you gets the smokers wheeze first.
Yeah, exactly, and I don’t have the wheeze at all, and the coughing is always really sporadic, not everyday or even close. And I also have a lot of sinus problems right now from allergies, because not only are seasonal allergies beginning because it’s finally spring here, but the mold count is super high, and I’m really allergic to that. So yeah, I don’t think I have a smokers cough that only magically appears when I’m sick. lol
I love how whenever I cough for any reason, my friends are like “You’re really getting a smoker’s cough, you should really stop smoking.” And I’m just like “No, I don’t have a smoker’s cough. I would fucking know if I did, because I would be coughing all the fucking time. It’d goddamn allergy season right now, that’s why I’m coughing.”
I mean shit, even my mother and grandmother don’t have smoker’s coughs, and they’ve been smoking like a million years longer than I have. I’ve only been a regular smoker for like 2 years, come on guys.
I got a message from a friend inviting me over (this is the first time she’s contacted me at all since my surgery, she never once called or texted or anything to ask how I was) and I explained to her that I can’t really leave my house, but that she can come over if she wants. And she was like “well I don’t really want to leave my house because I have a sore throat, so it would be much easier for me if you could come over here.” So I explained to her how I really, really can’t leave my house. Like I can barely get up to go to the bathroom and making it just to PT once a week is incredibly hard. And she just doesn’t get it. She kept pushing and pushing saying that it’d be so much easier if I just came to her place instead, so that she didn’t have to borrow her boyfriend’s car. And like… I just don’t get what she doesn’t understand. And so I explained my knee situation to her (since she doesn’t know anything about it since she couldn’t be bothered to even facebook message me), and she was like “well sorry if you feel like I don’t understand your pain enough, I’m just trying to be helpful, but whatever.” I’m sorry, but I don’t understand how harassing me about how I should leave my house to hang out at yours when I physically cannot and you can way more easily come over here is helping me in anyway. So I still told her that she’s still welcome to come over anytime when she wants to, and she was like “oh, well I’m actually realllllly busy, so I doubt I’ll really have any time to hang out with people.” Umm… Didn’t you just invite me over to hang out? Ok, never mind. I get it.
So I kind of ranted about it a bit to a friend, and about how I get really frustrated with not just the stuff post surgery, but just in general how people don’t even want to try and understand my chronic pain condition and how they’re always pushing me to do stuff that I can’t, and then calling me lazy when I won’t do it. Like how people are always trying to get me to hike the M here (a trail going up the town mountain), and I literally cannot physically do it, but for whatever reason my friends won’t accept that and keep telling me that I HAVE to do it, and that I’m being lazy and missing out on a Missoula experience by not. Like, I get that I’m missing out on a Missoula experience because of a disability, thanks for fucking reminding me. This condition is not a fucking choice, and it’s not something I can make magically fucking go away.
And then my other friend that I ranted to kind of chewed me out saying that I need to be more accepting of the fact that people don’t understand my condition, and that I shouldn’t expect them to. Because they’ve never had chronic pain, so they don’t know what it’s like, and they can’t possibly understand it, and I just need to accept that they think that I’m lazy and just refusing to do things, because that’s just how it is. And that I’m not being understanding enough of them, because I don’t know what it’s like to not have chronic pain.
Like, what. the. fuck. I don’t have to fucking “learn to accept that people will never understand”. I don’t expect people to fully understand what it’s like living the way I do, but I expect them to at least fucking try, and to just accept that this isn’t my fault or a choice, that even though you can’t physically see it that I have a disability, that I’m not “just lazy” or “refusing to fix it” or “milking it”, and that when I say that I can’t physically do something, it means I can’t fucking physically do it.
Sometimes I get so frustrated by all of this that I just want to cry. Sometimes I think that even though I disagree with a lot of what they say, that maybe I should go hang out more with the social justice crowd, because at least they don’t fucking question people’s disabilities. Like I have this new group that I’m working with, and they’re all kind of social justicey, and whenever I say that I can’t make it to a meeting because I don’t feel well, or I’m in a lot of pain, or even just really depressed and don’t want to talk to people right now, they’re like “oh, yeah! That’s completely fine! I hope you feel better, just let us know if you need anything or if there’s anyway we can help!”
And like, that’s just how all people should fucking be.
Random story I was just reminded of:
A couple of summers ago, my friend Greg and I went to the St Louis Arch. As we were walking out, there was this big family in front of us. One of them was a boy, probably around age 7, and he was walking super fast, and he had this super determined look on his face. Finally his mom was like “Why on earth are you walking so fast?” And he turned around, and super seriously went “I AM LEAVIN’ DIS PLACE AND I AIN’T NEVA COMIN’ BACK!” And then turned around and continued stomping forward. His whole family and Greg and I about died laughing together.
And now I quote that constantly, and every time I expect other people to laugh when I do it and understand the reference, and then I remember that it wasn’t a funny youtube video, it was an actual real life thing that only Greg and I saw, so they have no idea what I’m talking about.
jpkitty said: Why anyone would intentionally abuse opiates is beyond me. I’m so glad you have a good doctor. :)
Yeah, I mean I guess I sort of get it? But not really. There are just too many downsides to high doses. Tiredness, itching, stomach cramping, sluggishness, constipation. (Also I have this illness where I don’t digest food correctly anyway, and because the opiates slow down my body even more, I’ve been throwing up undigested food a lot because the high doses are making it worse. I also have weirdly hard time peeing? And it’s because of the sluggishness, and it’s weirdly unpleasant.) I couldn’t handle being at these high doses longer than I have to. (which will unfortunately probably be a long time.) I mean I’ve never even really gotten the supposed “high” from them. They don’t really make me feel much mentally at all. They make me feel really good, but not in like the way you hear from addicts and people who take them for fun, just in the “I finally don’t have any pain and feel normal and like I can do normal things like vacuum without wanting to die” way. And the most I get from them is that I feel better, so I get a little more talkative. I’ve never had a reaction like in media where people get all weird and shit, ever. Except for maybe when you initially get an IV of like morphine or something, but that’s just because it hits your system so quickly, and then it quickly goes away. So for just a split second I’m like “WHOA” but I’m also the same way when I get IV benadryl or something. So I’m a huge fan of opiates, but not because I get a thrill from them, but just because they allow me to live a normal life that everyone else can naturally. I’ve just literally exhausted like every single other method for pain relief, and this is the only one that actually and consistently works. I’m just so lucky to have a doctor that agrees with me. We actually had like a 2 hour talk a couple of years ago about whether I wanted to take them daily or not. The way she explained it to me was basically “It’s a quality of life thing. If you take opiates everyday, you won’t be in pain, but you’ll be dependent on them. You literally won’t be able to live properly without them, and you’ll go throw withdrawals if you ever have to go without. But the alternative is to live everyday with the pain. So it’s up to you what you want, and I’ll support you either way.”
I just hope that whenever I move someday I can find another doctor as good as her, but that’s going to be really hard. It’s probably one of my biggest fears about moving. It’s so incredibly hard to find anyone who takes my condition seriously enough, and so many doctors are afraid of opiates and especially the scrutiny they can come under for prescribing them frequently.
So I went to see my dr today, because the nurse had told me she wanted to see me because she was worried about my “pill seeking behavior” and “possible addiction”. Well… apparently that wasn’t true at all. She wanted to see me because she was worried that the pills weren’t doing enough for my pain, and was worried about how much Tylenol I was getting in the Percocet.
So she asked me how the pain was, and I said that the pills were helping a lot but that it was still pretty bad. So she asked if I wanted to up my dosage or just try a different, stronger pill. I said I didn’t want to try a different one, because I know how I react to Percocet, and after the Dialadud allergic reaction, I don’t want to risk that again. She agreed that that was probably a good idea for now. So until now I’ve been taking 2 10mg Percocet every 4 hours, and I’ve been getting 60 pills at a time, so I’ve been refilling it once a week. So today she changed it to 1 20mg Percocet every 3 hours (more if needed, but not “officially”, just let her know if I do it regularly), and I got 120 of them, which she said she last me 2 weeks. (But if I need them a little sooner, she’s fine with that. Just as long as I’m not calling her for more in like 3 days lol, then there *might* be a problem.) The new ones also don’t have any Tylenol in them, because according to her “opiates aren’t really what causes problems when taking opiates. What’s dangerous is how much acetaminophen you get, the oxycodone itself won’t really do much damage.” That’s pretty cool to know. She basically said that she doesn’t care how long I have to be on these high doses and if I have to keep upping it, because she knows I’m in extreme pain, and not just from the surgery. I have chronic pain all the time anyway, and she was like “So not only are you dealing with the surgery pain, I know you still have your chronic pain. And I imagine that you’re hurting pretty badly from the stress of sitting constantly in the same position, and that has to be taking it’s toll. Plus you just started PT a couple of weeks ago, and all of those exercises are probably hell.” It’s so amazing how much she gets it, I’ve never had and will never have another doctor that understands just how intense my daily pain is, especially right now.
Also she apparently already knew about the behavior of her nurse, because she apologized for her behavior. She said that she’ll do her best to make sure it doesn’t happen again. I asked her if she really did think I had a problem with opiates, and she was like “No, absolutely not. You know why? Well the first part is the fact that you’re worried about it. You’re very self aware. Also, I know your history. You literally need opiates everyday to live a normal life, and that’s not addiction, it’s just medicine. The only people that would call you taking care of chronic pain and post op wounds addiction are idiots who probably think everyone should just accept pain and work through it. Also, I track exactly how much you take, and you’ve never called in a prescription early unless there was a legitimate reason, you’ve never sought out more meds from another doctor, and you’ve only asked me to up your dosage on a handful of occasions, and today you even refused when I asked if you wanted a stronger drug. I’ve been a doctor for a long time, and I know how addicts act, and you clearly aren’t one.” That made me feel really good, because being the child of a drug addict, sometimes I worry about being addicted and not knowing. And having people accuse me of it doesn’t help. And then I told her exactly what the nurse had said about “pill seeking behavior” and addiction and all that, and she was so fucking pissed. She told me not to listen to a word she said, and that she’d be having a serious talk with her later. She also put an official note in my files that said that anytime I call about pain, they’re to just write down what I say and give it directly to her without making any comments or harassing me. And she apologized again and was like “My nurse is a good person, she’s just young, over eager, and under educated on these matters. She thinks she knows all, when in reality she’s never examined you, and knows nothing about you or your history. I’ve been your doctor for 5 years, and I was the one who diagnosed your condition, and she needs to accept that I know what I’m talking about without questioning it or especially you.”
She also examined my knee, and was like “Wow, no wonder you’re still in so much pain. Your right knee is swollen to over twice the size of your left, it looks like it should just in the first days after surgery, and it’s been over a month. It isn’t infected and it’s healing fine, it’s just doing so about 10 times more slowly than it should, which is honestly to be expected considering your Ehlers-Danlos. But yeah, you’re going to be in a lot of pain for a long time, and that’s just how it is, so I’m going to manage it accordingly.” I also told her about my extreme foot pain (the severe burning, especially in my big toe, the fact that my toes will randomly turn blue, and how it’s strangely numb at the same time as the burning) and she said that she thinks I have nerve damage from the surgery. She hopes it isn’t permanent, but that’s something we have to wait and see on, so she gave me some nerve medication in the meantime. I hope it helps. Then she gave me the script and made sure to put a bunch of notes about how it was a purposeful increase in dosage, a refill should be expected in 2 weeks or less, and then made sure to sign and date it like 6 times, because Walgreens is known to question pain pill scripts all the time. The amount of pharamcists that have claimed I have a forged or fake script because of how often I get fills is ridiculous, and they always call my dr expecting her to be like “NO SHE’S AN ADDICT” and every time my dr yells at them for delaying the fill. And she especially didn’t want it delayed today, since it was after 5 on a Friday, and then I wouldn’t get it until Monday when they could reach her. (My appointment went late, because she spent over an hour with me.)
And I still had problems at Walgreens. They claimed that Percocet is no longer manufactured. LOL I think America would know if one of it’s most used pain meds was suddenly discontinued, especially my doctor. They literally just did not want to give it to me. They also mysteriously didn’t realize it was “discontinued” until they checked my file. So I went to the other Walgreens, and surprise surprise, they didn’t have a problem.
So yeah, sorry for the really long, ranty post, I don’t expect anyone to actually read the whole thing. But I just felt like writing it all out, I don’t really know why. I guess to update you guys who seemed concerned last week. But yeah, long story short, my doctor is the best doctor in the entire world, and I love her dearly. And I love that she understands me so much, cares so much, and is really into pain management and doesn’t want me to suffer. But I’m extremely happy now that this has all been straightened out.
Also, I don’t think I could ever be a serious opiate user to this hardcore of a degree for longer than I had to, because HOLY SHIT THE ITCHING. I’M GOING INSANE. Seriously, I take so much Benadryl, and it doesn’t even help that much. I think I’m going to start looking like a methhead soon from all the scratching I’m doing.
Want to know what I find to be the saddest and funniest thing ever? So my dad goes to AA, and gets those chips. But he can only ever manage to be sober for 24 hours at a time, so he can only get the 24 hour chips. But he’s super proud of all of them, so he keeps them in a bowl on his kitchen table.
He has literally like 100 chips sitting in a bowl, in plain view, on his kitchen table. It’s like he’s proud of this bowl of failures. It’s because he thinks people can’t tell that they’re only 24 hour chips even though there’s a big “24” stamped on every of them, so he assumes people see them and go “WOW, YOU’RE SO SOBER! GOOD FOR YOU!” When in reality he’s in and out of detox like at least once a month, and everybody knows it.
seekercranny said: I’m so sorry they’re acting like that. I get that they don’t want to be enablers but it shouldn’t come at the cost of patients who are in pain. I hope you can get through to your doctor soon.
Yeah, I know there’s definitely a problem with addicts seeking out meds, buy my doctor knows fully well that I’m not one of them. We’ve talked extensively about pain meds and a pain management program, and she’s said before that she knows that I’m not an addict just because I use narcotics everyday, that that’s just what I have to do for chronic pain, and that she’s on board with that. It was actually her idea to begin with, since I’d exhausted all other pain relief options (physical therapy, different exercises, home remedies, etc.). But also, it’s not the nurse’s call to make whether I get a prescription or not, it’s up to the doctor. The nurse is just supposed to relay messages back and forth. And I really don’t appreciate someone who doesn’t know me personally or my medical history at all calling me an addict over the phone.
But also, the nurse called back a few minutes ago and sounded super pissed off. She said that my doctor went ahead and refilled it for me, and that she explained to her that I needed the meds, and that she expected my usage to go up after the surgery. The nurse was pretty passive aggressive about the whole thing and sounded super mad, so I’m guessing she was laid into pretty hard. But now I’m happier, because at least I have meds now and don’t have to worry as much about what I’d do without them, because I think I’d pretty much just go insane what with the amount of pain I’m in.
Also, thanks to you and everyone else for the nice words last night about my other ranting post about abuse / rape. I’m just going through some hard shit right now, and dealing with all of these awful people is not making it any easier.
Holy shit my doctor’s nurse is rude. I just got off of the phone with her, and it was ridiculous. I had called and left a message that I wanted a refill of my pain meds. So they work basically like this - last Friday, I got 60 10mg percocet. I’m supposed to take 2 every four hours as needed. I pretty much take 2 every four hours all day, because the pain is so bad that I can never sleep more than like 3 hours at a time. So I still have about 14 left right now, but that’s not enough to last me through the rest of today, Saturday, Sunday, and most of Monday. So I explained that when I asked for the refill.
And the nurse called me back and talked for several minutes giving me a rundown of every time I’ve been prescribed pain meds in the past month. And then she asked me how I’m taking them, and I told her 2 every four hours, just like my prescription says. And she went “UMMM You’re supposed to take them AS NEEDED. As in, don’t actually take them that often.” I explained that they are needed. I’m literally in so much pain that I can’t move at all or sleep or anything. I just sit still all day, everyday. And she said that I need to call my surgeon about the pain, not her. And I was like “Ok, well I saw my surgeon. He said that pain management is now my regular doctor’s job. And he said that the pain is normal - it’s a very painful surgery, and it just takes a long time for it to go away. I also started physical therapy this week, and it’s extremely painful.” And she was like “Well, Dr. Maddox upped your dose from 7.5 to 10mg, so you shouldn’t need to be taking it that often. It’s strong enough, I know you’re not in that much pain. You’re abusing them, and you know it. And I don’t feel comfortable asking the doctor for more for you, and no, I won’t put you through to her. This is pain pill seeking behavior.”
WHAT THE SHIT. I HAD A FUCKING MAJOR SURGERY 3 WEEKS AGO. HOW IS THIS PAIN PILL SEEKING BEHAVIOR?! Plus my doctor told me herself not to hesitate to call her if the pain got worse, and that she’d always take care of it, provided I wasn’t going through them too quickly. I’m taking them exactly as prescribed, and I even did a count of what the max I’m allowed to take a day is, and how many I have and have left. I’m not evening taking the full max I’m allowed to everyday. This is such bullshit. I’m in so much pain that I even had to cancel my physical therapy yesterday. (Which my therapist was fine with btw, she agreed that if I’m in that much pain we won’t be able to accomplish anything.) And my foot is fucked up too, because apparently according to the ER, a nerve was damaged in my knee during surgery, and it’s causing severe foot pain. Whenever I do sleep, I literally wake up constantly from severe pain, to the point that I wake up crying. And I dislocated my kneecap a couple of weeks ago, the same knee I had surgery on. AND I pulled a muscle in my other leg yesterday, from all of the stress of putting weight on it. So I literally cannot walk or move at all right now. I can’t even walk across my house to go to the bathroom. I’m having to sit in the chair and pee into tupperwares still.
This is such bullshit. I can’t even handle my life right now.