I have trouble telling my doctors about my symptoms and difficulties communicating in general

It occurs to me that I have barely ever managed to verbalize the fact that the meds are ruining my life to the doctors prescribing them. This could be for a lot of reasons.

First and foremost, it seems like I go blank when I enter a doctor’s office. I’ve always been nervous in doctor’s offices and hospitals. I just answer the questions they ask me.

Another reason is that sometimes, in the past, when I have tried to bring up these things, they have been minimized by medical professionals. I’ve been told things like, “Other people are on the same medications and they cope just fine.” Well, I just told you I was not coping “just fine,” you know? Had I been coping just fine, I wouldn’t have mentioned it.

And other than those things, there is the fact that I worry nothing can be done about it, so why even bring it up? If they can’t reduce the meds, and can’t get me off the meds, then there is nothing to do besides just continue to roll with the punches.

Other than that, since I have been on the corticosteroids I have always had trouble with numerous things, leaving the house, communicating with people (I often fail to check emails or Facebook messages, just the idea of looking at them gives me anxiety), reading my mail, answering and making phone calls. I do not use text messages at all. I don’t use instant messengers, Skype, etc.

On the other hand, I have no problems communicating in more public spaces on the internet, like internet forums. I have a couple of Youtube channels, I have no problems (usually) making videos, replying to comments on them. I think the think with internet forums and public Facebook groups and posts is that there is no pressure. If you’re talking about something on a forum and you just fucking disappear for two weeks, no one cares. It’s a forum. People do that. This is less true of communicating directly with people via texts, instant messengers, Facebook private messages, phone calls, etc.

I never liked telephones much but I wasn’t especially horrified of them, either. I just can’t seem to deal with any human contact of any sort, unless it’s completely impersonal and public.

Rambling about the past few months

The doctors don’t want me on so much prednisone, so they cut it down quite a bit and I ended up with all my skin falling off and a full-body staph infection in October. That stressed me out quite a bit. They also tend to want me to jump through various hoops just to get my pills, which, in addition to keeping the skin under control, also keep me alive since I have adrenal insufficiency. This stresses me out even more.

In theory, I’d be happy to be on less prednisone. As I mentioned to my therapist, when I still had one, I feel like I am intoxicated on drugs 24 hours a day. Part of this is due to the meds exacerbating the mania, but part of it is just the drugs themselves. The beauty of recreational “fun” drugs like LSD and pot is that you can enjoy them a while, and then eventually they wear off and you can go back to your normal life and your normal functioning without any impairment. While corticosteroids are not “fun” drugs, the brainfog and the feeling of impairment is real obstacle that stresses me out and ruins my life every single day.

In addition to that, there is a feeling of doom hanging over me at all times, and a disconnect from the rest of humanity. In general, I feel like there is no way out of my situation and things will just continue to get worse until I eventually drop dead. I have been in such a godawful place psychologically that not only am I unable to talk about it with people, I can’t even type anything about it here. I can’t even easily work through it inside my head because I feel like I should just wallow in the brainfog and denial because I don’t want to face my own thoughts.

I have reduced my stress somewhat by not looking at my Facebook newsfeed anymore (I have a few groups I look at and maintain bookmarked, but for now, I am not looking at my newsfeed for any reason. Until I am less stressed out by it.) I am not deactivating, but I have also made two accounts, one for family and one for nonfamily. All of this makes Facebook a less threatening place for me, and I don’t think it should be a cause of stress.

Other than that, I just finished a huge work project and may take a few days off from work to do things like watch movies and read books.

People who give unwanted advice


I think it should specifically state “mental illness,” too, even if it’s implied in the chronic illness category.

Exercise doesn’t necessarily improve or cure mental illness. Also, it is very likely they have already considered it. And for some people, doing it is difficult. People with limited mobility may obviously have a hard time exercising, but also people with mental illnesses which make it harder for them to get out and do things. Also applies to yoga.

As for marijuana, if it helps you with whatever, great. But please quit telling me (and others who don’t want your advice) to just smoke pot and it will cure all your ills. For some people, it makes things worse. For others, it may not do anything positive.

Stopping all medications: good gawd. I’ve been told this so many times, by so many people. “Don’t you think you’d feel a lot better if you’d just stop taking all the pills?” No, dipshit, because I’d be dead. I need corticosteroids to replace the hormones my body doesn’t make, which are necessary for me to continue being alive. This also goes for people who take psychiatric drugs. Any time a person mentions a negative side effect from a psych drug, the anti-psych meds people have a field day. “The ‘cure’ is worse than the disease!” etc. I’ve had some tell me that NO ONE, as in no one in the history of mankind, has EVER been helped by a psychiatric drug. [*facepalm*] They are so anti-drug, and they apparently see everything in such black and white terms, that they don’t comprehend that some things have positive and negative sides. A pill might give you a dry mouth, but if it helps you to function better, it may be worth it.

Vitamins: the only time you need to be supplementing vitamins is if your doctor has diagnosed you with a legitimate deficiency through blood tests. Otherwise, you’re paying for expensive pee.

Natural remedies: many DRUGS came from plants and other natural sources. The difference is that medications are regulated, tested, and you know how much active ingredient you are getting. They are safer. Alternative medicine which has been shown to work is called “medicine.” Alternative “medicine” has either not been shown to work, or shown not to work. It is possible that people want medicines that actually work.

Going veg*n: I have nothing against people who do this for their own reasons, but it’s problematic to push on others. If you do not feel the need to do so for ethical reasons or whatever, then there is probably no problem with continuing to eat animal products. A lot of the arguments (other than ethics) seem to come back to a sort of black and white thinking: the inability to understand that moderation is a thing that exists. If a huge amount of red meat can be bad, that doesn’t mean a little bit here and there will kill you. Additionally, just eliminating meat or animal products, on its own, does not guarantee that your diet is healthy.

Acupuncture: it has never been shown to work better than placebo.

Colon cleansing: no, not sticking hoses up my butt. This has also never been shown to be healthy.

Sleep: some people have trouble getting the amount of sleep they want, but you talking about getting more or less probably won’t help in any way. This is another thing that everyone has already thought of.

Positivity is really my biggest peeve on here. If you say that, people accuse you of being a champion of negativity or something. No, I am just saying thinking happy thoughts does not cure physical or mental illness. You can’t think these things away, or no one would have them.

This goes along with the people who say “the only disability is a negative attitude!” No, disabilities fucking exist and they can make life harder for people who have them. And yet you get people with no physical disabilities, no learning disabilities, no other major issues, talking down on people for not being positive enough because that’ll fix everything. It minimizes the fact that some people legitimately may have obstacles keeping them from doing some things, or performing as well, doing things are quickly, etc. as people without those issues. Again, this is not saying people with disabilities should sit around feeling sorry for themselves; this is acknowledging that their disabilities exist and may impact their lives in some way.

Introvert Bingo

Voicemail: I let every phone call go to voicemail without exception. No one has my phone number except doctors’ offices at the moment, I’m pretty sure. I only answer the phone if I’ve previously agreed to do so at a certain time, but you pretty much would need my prior written agreement for me to pick up the phone when it rings.

Books: I read a lot more than 3 books per month.

Home: Yes. My favorite place.

Avoidance: Every chance I get, pretty much.

Excuses: That, too.

Fictional characters: Fictional characters are more attractive to me than real people, because I find that the better I get to know people, the less attractive they become (if they were attractive at all in the first place). Not a problem with people I don’t know, obviously.

I don’t take naps very often.

Writing: I think I’m better at writing than talking. I have more practice with that, anyway.

Awkward: I’m awkward, probably not adorably so.

I’m a terrible listener and usually hate doing it. I don’t like communicating with people most of the time. There are exceptions, but I wouldn’t make a general statement like “I am a good listener,” because that would not apply in a general way.

Cooler: Not sure. Probably.

Artists & authors: Yes.

People make me tired.

I do most of my shopping online: 90%, I’d say. If I can buy it online, I probably do. There aren’t a lot stores within walking distance.

December is still a shit month

I got a Fitbit Charge 2 which is kind of fun, and I wanted a watch. My anxiety has been through the roof these past few days, though, and the Fitbit tells me my pulse rate has been very high, also.

I get the feeling like time moves too fast and I have no extra time at all. Sometimes I feel like I don’t have an extra ten minutes per day to do anything I might want to do. I’m too wound up trying to get work done and other things done, and make phone calls, and worry about doctors, that that’s all there is every day, and it wears on me after a while. I have no idea how other people find time to hang out with their friends or talk on the phone or whatever it is that real people do.

I was completely panicking yesterday because I had a painting that needed done ASAP, and was up all night working on that, then looking for more work, then wandering around town to the post office, etc. I’m thinking I should just take a few days off of everything and not even turn on the computer or phone. Of course, that will just add to my guilt when it comes to not getting enough things done, continuing to put off important phone calls, and so on, so I’m not sure if it’ll help at all.

It’s also been really cold out and that makes me not want to go outside much. Can’t walk the dogs much or very long, since we’ve had a wind chill factor of -11F. I’ve enjoyed the snow shoveling this year, though, but it just reminds me that I’ve forgotten to fix the gate in the yard. It needs a couple more screws in it, and it would be nice to do that on a dry, warmer day.

But in general, it feels like all the distant black clouds that have been following me for years are directly overhead and pissing all over me at the moment.

December has also been a shit month

Last month I was ready to say November was the worst month in recent memory, but December might take that spot, I’m not sure yet. I did figure out the shit with the dermatologist and it will be taken care of as of tomorrow. The other shit involved two massive clouds of doom. One is financial (and could potentially be helped by looking into loan forgiveness). The other led to me discussing previous suicide attempts with my mom while in the car the other day, because I am not likely to get better, and if I do, not any time soon. The main problem is the cognitive deficits. I can’t think right, my thinking is impaired, my impulse control is impaired, my ability to plan ahead is nonexistent. I stopped going to therapists when I realized the problems were largely neurological, not psychological, and that therapy wasn’t helping and drugs probably wouldn’t, either. Only getting off the current meds would help, and that’s not possible right now due to adrenal insufficiency. I was reading something yesterday written by a binge drinker on why he drinks and it resonated a bit with me. I don’t drink much, but I do binge drink and I do it because there is no way out. It is all doom and decay and an inability to think straight, and if I’m too sober all the time I am unable to psychologically cope with reality. If you don’t understand that, good for you, it either means your reality is ok, or that you cope with it better than I do.

Updates 11/26/16

I deactivated my Facebook a few days ago. I think it’s mostly a matter of improving the signal to noise ratio rather than anything specific. And it certainly does do that. Facebook is about 98% noise, as far as I can tell. I was thinking a lot about how people are influenced by social media, and while I like to think I am fairly self-aware when it comes to these things, I had to wonder why I still used it and to weigh the pros and cons. I’ll probably reactivate at some point just because everyone on Earth seems to use it, but for the time being, everything is great.

Am I getting things done? Sometimes. It’s not like Facebook was the only place on the internet to waste hours. But it was really the only unending stream of bullshit in my life. I think I may have been on to something when I thought about deactivating most of each day and reactivating for a few hours here and there, but that’s way too much work.

I don’t like or trust their algorithms. I wouldn’t mind being more in charge of what I am looking at and reading throughout the day. I work on the computer so I am on it a lot, and when things are slow there is a temptation to waste time on Facebook. It’s easy to do, and, unlike Amazon, it usually doesn’t cause me to spend any money.

The past few months have been disastrous, health-wise, and I have worried that I’d end up in the hospital again for skin issues. Thankfully, this did not happen, but since the doctors want so badly to reduce the corticosteroids, things got pretty fucking bad before they could be convinced to do anything that would actually help things (=more corticosteroids). And I’ve been having trouble making phone calls at all, but this has improved in the past week or two. And it seems like everyone on earth is trying to take all my money, which is stressful. Also, I dislike holidays and think they often tend to bring out the worst in people.

Things aren’t especially bad, but there is always a feeling of dread of the future, I suppose. I could try to be positive but it makes me feel like a fraud, and I think I’m just programmed this way.

This week has been ok

They have increased my prednisone and my cellcept, both of which can cause insomnia. I have gone for 3 days without sleep a few times now, but overall, remaining rather sober and productive, all things considered. It’s been a pretty slow couple of weeks for work but I have other things to do and am keeping busy, for the most part. I’ve been meaning to update more but haven’t had a lot to say.

Shit I am sick of hearing

First and foremost, I am sick of people saying if stuff sucks, you can just go and change it. I can’t make my adrenal glands start working again, and the majority of my problems are caused either by this or by the medications for this. I am very sick of people saying you just need a positive attitude. If you’re in pain from the minute you wake up until you go to sleep at night, it can be somewhat challenging to be cheerful all the time.

That being said, I am also sick of people telling me I probably complain to people all the time. I can’t remember the last time I complained, out loud, to another person. I avoid human contact if I am not in a good enough mood. And then, at the same time, people tell me I should talk to people about myself and then I’d feel better. [*facepalm*] In any case, I don’t talk to people about myself much at all and have very much crawled up my own asshole and died, to paraphrase Vonnegut.

I’ve also had numerous people tell me that I can’t possibly be suffering from things like impaired cognition, poor executive functions, short term memory loss, and attention problems, despite these being listed as side effects or symptoms from my meds and health problems. I’ve done things like making lists, but writing things down is a poor substitute for being able to think clearly and remember things. My former therapist suggested maybe I would benefit from ADHD-type meds, but I have not tried this or discussed it with my regular doctor yet, and I have enough trouble as it is remembering to take the pills I’m on and dealing with the side-effects of those.

I also think about parallels with dealing with grief. People often say that it is work, that you need to do it and get through it rather than repress it and remain in denial. That tends to be how I think about negative feelings in general: that they are often valid feelings and maybe you shouldn’t repress them 100% of the time. If things kind of suck, I think it’s probably ok to acknowledge that they suck now and then.

Anyway, I don’t think my current situation is the result of mental illness alone. I think I coped with things quite well before getting seriously physically ill (adrenal crisis can kill you quit rapidly and I’ve come close more than once). If I am sometimes in a shitty mood, it is because I am sick and I do not see a way out. I only see things getting worse. I’m subscribed to various groups for adrenal and pituitary-related diseases, and am bombarded with “in memoriam” posts about people with the same and similar illnesses dropping dead before they are 45. That and the medical literature also makes it seem like I don’t have a very long life expectancy, and that all that remains of that life expectancy is going to be miserable most of the time.

Anyway, though I am sure positivity has its uses, people telling me to deny that anything is wrong with me physically or that my meds have a very negative psychological affect does make me want to say “fuck your positivity.” Unless your life is perfect, you probably can’t be positive all the time. I have seen my entire life turn to shit and all my dreams and goals in life as well as my health crumble within the past 10 years.

I used to at least enjoy things like writing or painting, but the brainfog has impaired any sort of creative urges to the point where I find myself unable to write, no matter how much I push myself. Some might consider this unimportant, but it tends to mean that there is absolutely nothing in life that I am able to enjoy or feel good about, so I consider it a great loss. I didn’t even let people see or read most of my shit, I did it for myself, but I enjoyed it, and I don’t have that anymore, either.

It is possible that someday in the distant future, I will be able to get off of the corticosteroids. The endocrinologist said it will, at the very least, take years. I’ve also read that the negative side effects of long term corticosteroid use can persist for years after stopping the meds, and it’s quite possible that 10 years of high doses of steroids has really fucked up my insides and lessened my life expectancy, and yes, that bums me out sometimes. And I feel like it’s ok to be bummed out about that sometimes, especially since I only mention it on the internet and no one is forced to read it.

Another minor medical crisis

I’ve been having a bad time with my eczema, and have made the doctor aware of this 3 weeks ago. I’m still fighting to get a new prescription, which I’ve been asking for for a week now, and without which I will go into adrenal crisis and definitely end up admitted to the hospital. I’m currently waiting for my GP’s office to open so I can ask them for a skin scraping test, which is only one of the hoops I need to jump through to get my goddamn refill. You’d think these were fun drugs, with all the shit I’m having to go through to get them, but they sure aren’t.

In any case, I’ve been in a constant state of abject terror for a week and a half now, partly from the nightmarishness of being in pain all the time, can’t sleep, can’t concentrate, etc., and partly from the fear of running out of pills, which don’t just help the skin, they actually keep me alive. I have enough for 2 more days. Hopefully, I can get an emergency appt with the GP and they will do this test (no idea if they do that there, or if it can come back the same day), then call the dermatologist and beg for a refill again. If I don’t get a refill, I will have no choice but to go to the ER over the weekend and get pumped full of painkillers and IV steroids. I’ve told them this. Everybody knows this. I don’t know why they can’t just give me the Rx and then have some tests, because I am tremendously stressed out. I know in the back of my mind that someone somewhere will do whatever to keep me from going into adrenal crisis, but I still get stressed out without the pills and I know it’s all been a lot harder than it should be. Considering the adrenal insufficiency, I feel like I should never, ever be this close to running out, for reasons of safety and because I lose my mind when it happens.