Chronic Illnesses and Life

[Koski]

First off, I'm not making this thread because I'm poking around for sympathy. I'm sick and I know it and this is how it is.

I have a chronic illness called Rheumatoid Arthritis (abbreviated RA), and an aggressive form of it at that. It's an auto-immune disease that causes the immune system to attack the joints in the body, causing them to become swollen ad inflamed. This makes them hurt a whole lot and makes them stiff and hard to move (feels like trying to ride a bike with a rusty chain). On bad days, the joints in my feet will hurt so much that in my half-sleeping stupor in the morning, I have seriously thought 'oh crap, how did I manage to break my toes?', and I can walk for the rest of the day, even when I'm on my various painkillers. Apart from getting swollen and hurting most of the time, another symptom is, well, having inflammations in your body all the time, something that makes you tired and unmotivated. This sounds a little ridiculous, but it's something that greatly affects my life, because I often have problems getting up in the morning or feeling motivated to do even simple things, such as going outside or cleaning.

I've had this diagnose for almost three years now, and most of the acceptance period has passed and I've generally landed in the situation; I am sick and I will be sick for the rest of my life. I get treatment and I go see a doctor regularly.

Pardon ahead if I confuse some of the names of these substances, english is not my first language and don't know the english name for some of these. As of current, I am on methotrexate and an IV drip medication called remicade. To compliment these two, I take an anti-inflammatory medicine called orudis retard to help with the days when I'm in pain.

Remicade is supposed, and has for two years, left me feeling fantastic for two months until I get my next treatment. But for the last six months, I've felt great the first week before I start waking up every morning in pain.

Even if I have these medicines and I go see a doctor regularly, I'm always going to have my ups and downs. Right now, I'm in a down period. I wake up every morning in pain, I feel so extremely unmotivated to do anything during the days, I don't have enough energy to get out to look for a job and I feel increasingly miserable because this state leaves me incredibly uninspired and I can't draw because of it. On top of that, I'm suffering from some side-effects from the remicade that greatly affects my memory and concentration, which means that I can't remember to do the things I said I would do during the day.

I've tried to get a hold of my doctor and express my worry over how I'm doing, and I can't help but feel dismissed as not serious because I'm only 21.

Again, I'm not looking for pity; I'm looking for some advice on how to not let my illness govern my life.

Are there any other people here on the Escapist who have chronic illnesses, in that case what are they and how do you deal?

 

[Daniel Castro]

Hi there, good thing I stumbled into your post, since I think I can offer some help.

My girlfriend was also diagnosed with Rheumatoid Arthritis at her 22 years old. The doctor who attended her practically gave her the "now this will be your problem for the rest of your life..." lecture.

She went trought exactly the same thing as you: the pains, problems to get up that were even worse with cold weather. She had to give up on her odontologyst career, because of the stress that her hands had to endure.

And as you said, her family didn't quite believe that she had a problem, they just told her that she was auto-suggesting herself that she had that sickness... "Arthritis at your 22? That's insane!"

Anyway, I don't know if you have the exact same problem that my GF had to endure, but my advice is still the same. Don't trust your general doctor, you need a rheumatologyst, and a good one.

The guy she went to see was really good and knew exactly how to treat that. She went through some analisys and treatment, and now she has a practically normal life.

I mean, she has a job where she has to stand on her feet all day long, she also plays videogames and plays Guitar Hero or Rock Band like there's not a damm problem with her hands... so, I think she is way better than when she was originally diagnosed...

I hope this advice helps you out, let me know if there's something else I can help, or if you'd like to talk to her since she might understand your problem firsthand since she went trough all that.

 

[MrShowerHead]

I got RA too. I was diagnosed about 4-5 years ago. It can be a pain in the ass, I know. I've been treated with Trexan for about 3-4 years now. Every Friday I get that injection. Gets quite annoying.

Something that really helps me is music. You kinda forget about that for awhile when you listen to something. Also, can you talk about this to any of your friends? They might be able to give you some support.

May I ask what part of your body is suffering from this? You said legs, but do you mean ankles or knees or something else?
Sorry for not really giving any advice, I'm not used to do this :S

 

[Koski]

Hi there, good thing I stumbled into your post, since I think I can offer some help.

My girlfriend was also diagnosed with Rheumatoid Arthritis at her 22 years old. The doctor who attended her practically gave her the "now this will be your problem for the rest of your life..." lecture.

She went trought exactly the same thing as you: the pains, problems to get up that were even worse with cold weather. She had to give up on her odontologyst career, because of the stress that her hands had to endure.

And as you said, her family didn't quite believe that she had a problem, they just told her that she was auto-suggesting herself that she had that sickness... "Arthritis at your 22? That's insane!"

Anyway, I don't know if you have the exact same problem that my GF had to endure, but my advice is still the same. Don't trust your general doctor, you need a rheumatologyst, and a good one.

The guy she went to see was really good and knew exactly how to treat that. She went through some analisys and treatment, and now she has a practically normal life.

I mean, she has a job where she has to stand on her feet all day long, she also plays videogames and plays Guitar Hero or Rock Band like there's not a damm problem with her hands... so, I think she is way better than when she was originally diagnosed...

I hope this advice helps you out, let me know if there's something else I can help, or if you'd like to talk to her since she might understand your problem firsthand since she went trough all that.

I do have a rheumatologist that I go to, I recently moved from Stockholm to Malmö though, and my rheumatologist up in Stockholm was cared a whole lot about my health, just because my RA was so aggressive and because I have it when I'm as young as I am. My new rheumatologist I've been trying to get a hold of for a month now because of my suspected side-effects from the remicade, and I still haven't even gotten any acknowledgement that I've actually tried as hard as I can to at least talk to her over the phone. .__.

Do you know what medication your girlfriend is on? I know a lot of people get this kind of super-awesome normal life from remicade, and it really stings for me that it might not be working as well for me anymore.

I have a lot of support from friends and family and I have them backing me up on this. Most importantly, they all respect that my pain and problems are real, and I couldn't be more thankful for it.

Thanks a lot for taking your time to answer this, and yes, I would love for you to ask your girlfriend how she handles the thought of being sick for the rest of her life. It'd mean a lot.

I got RA too. I was diagnosed about 4-5 years ago. It can be a pain in the ass, I know. I've been treated with Trexan for about 3-4 years now. Every Friday I get that injection. Gets quite annoying.

Something that really helps me is music. You kinda forget about that for awhile when you listen to something. Also, can you talk about this to any of your friends? They might be able to give you some support.

May I ask what part of your body is suffering from this? You said legs, but do you mean ankles or knees or something else?
Sorry for not really giving any advice, I'm not used to do this :S

Oh, hooray, fellow RA person!

Can't say I've ever heard of Trexan, does it work? Remicade used to work for me, but I still have to take painkillers to compliment it. And yeah, that sounds really annoying. Geez, I thought getting IV drips every 7th week was annoying.

I abuse music. I'm an artist at heart and I draw a lot, most of my inspiration comes from music, so there's no lack of that. Only sucks that pain is such a major inspiration-killer. And I talk to it to my friends and family, and I always try to be open about my RA to them. as I mentioned above, I have support from everyone close to me, plus my best friend is always there to hug me and listen when I need it.

For me, it's my fingers, toes and occasionally the muscles in my hip. Gets annoying to try and hold a pen when it feels like there are nails shoves in to my joints. And don't worry at all, it feels really good to talk to someone who understands. I do have a lot of people to turn to with this, but the problem is that no one really understands what it's like, so sometimes you just want to talk to people who understand it.

Thanks a lot for answering.

 

[MrShowerHead]

Oh, hooray, fellow RA person!

Can't say I've ever heard of Trexan, does it work? Remicade used to work for me, but I still have to take painkillers to compliment it. And yeah, that sounds really annoying. Geez, I thought getting IV drips every 7th week was annoying.

I abuse music. I'm an artist at heart and I draw a lot, most of my inspiration comes from music, so there's no lack of that. Only sucks that pain is such a major inspiration-killer. And I talk to it to my friends and family, and I always try to be open about my RA to them. as I mentioned above, I have support from everyone close to me, plus my best friend is always there to hug me and listen when I need it.

For me, it's my fingers, toes and occasionally the muscles in my hip. Gets annoying to try and hold a pen when it feels like there are nails shoves in to my joints. And don't worry at all, it feels really good to talk to someone who understands. I do have a lot of people to turn to with this, but the problem is that no one really understands what it's like, so sometimes you just want to talk to people who understand it.

Thanks a lot for answering.

I guess it works alright. Side effects are nausea(Although I have a different medicine to counter that) and tiredness. Also, I have to take a 3rd medicine the day after the injection. I guess that counters the effect it does to your liver. I guess you get used to that over time.

I never really got support from my friends. In fact, it was the opposite. They mocked me. Luckily nowadays they don't. Now they just don't care. Good to hear you don't have the same kind of friends.

For me, it's my wrist. It spread to my jaw too, but that got fixed pretty quickly by increasing my Trexan medication. And yeah, it can be hard to find someone who understands our situtation, but even if your friends don't really know what to say, just them being there for you can do a lot.

And remember, even though there isn't a cure for RA at the moment, there are many treaments which can help. And with the right ones, you can live pretty much normal life.

 

[Koski]

I guess it works alright. Side effects are nausea(Although I have a different medicine to counter that) and tiredness. Also, I have to take a 3rd medicine the day after the injection. I guess that counters the effect it does to your liver. I guess you get used to that over time.

I never really got support from my friends. In fact, it was the opposite. They mocked me. Luckily nowadays they don't. Now they just don't care. Good to hear you don't have the same kind of friends.

For me, it's my wrist. It spread to my jaw too, but that got fixed pretty quickly by increasing my Trexan medication. And yeah, it can be hard to find someone who understands our situtation, but even if your friends don't really know what to say, just them being there for you can do a lot.

And remember, even though there isn't a cure for RA at the moment, there are many treaments which can help. And with the right ones, you can live pretty much normal life.

Eugh, nausea. I get that from my methotrexate, as I'm typing, I have to use all I can to not run to the bathroom to throw up. I get medicines to deal with that, but I'm still crippled every monday because of it (you generally take methotrexate every once a week).

Oh. I'm very sorry to hear that you don't have support from your friends. That must have been horrible. I know I would have gone under if I had no one to support me while I was feeling like crap when I first got sick, failing school and stuff like that. Did you get any kind of psychiatric help from your hospital when you were still accepting the whole situation? I live in Sweden, and I don't know how this works in other countries.

I occasionally get jaw problems too. It started this christmas and I haven't been able to talk to my doctor about it yet, not sure if it's just my muscles hating me or if it's actually RA-related. I've been told that people with RA have an easier time getting jaw problems, is that true?

Friends do a whole lot, I don't know how I would have gotten through it if I didn't have my friends and fantastic parents.

And thanks a lot, I'll try to keep positive the coming months and not subject myself to being miserable because I'm in pain. It's all about getting a hold of my doctor. As it is now, there is no way I can hold a job.

 

[MrShowerHead]

Eugh, nausea. I get that from my methotrexate, as I'm typing, I have to use all I can to not run to the bathroom to throw up. I get medicines to deal with that, but I'm still crippled every monday because of it (you generally take methotrexate every once a week).

Oh. I'm very sorry to hear that you don't have support from your friends. That must have been horrible. I know I would have gone under if I had no one to support me while I was feeling like crap when I first got sick, failing school and stuff like that. Did you get any kind of psychiatric help from your hospital when you were still accepting the whole situation? I live in Sweden, and I don't know how this works in other countries.

I occasionally get jaw problems too. It started this christmas and I haven't been able to talk to my doctor about it yet, not sure if it's just my muscles hating me or if it's actually RA-related. I've been told that people with RA have an easier time getting jaw problems, is that true?

Friends do a whole lot, I don't know how I would have gotten through it if I didn't have my friends and fantastic parents.

And thanks a lot, I'll try to keep positive the coming months and not subject myself to being miserable because I'm in pain. It's all about getting a hold of my doctor. As it is now, there is no way I can hold a job.

Actually, I just checked... And I'm running with Methotrexan again :S Aah, silly me... Anyway, have you heard of Ondansetron? That's the medicine that helps against the nausea. Works for me...sometimes...

And, yeah, that year was hell for me. I got RA, went to my first knee surgery(Took me all summer to get back up and the best part? The operation didn't work. I've been through 3 operations now and NONE of them worked) and I was bullied at school. That was the first and last time(for now) when I was really depressed. Almost commited suicide. And nope, didn't get any psychiatric help, I was too scared to talk to anyone.

If you think you have something in your jaw, talk about it. Really, next time you see your doctor, tell it. I did and when they did, they found out RA was spread all the way there. Luckily I didn't have to go through a surgery.

And about my friends....well, they're all boys, so how could you think some of them would be mature? Sometimes it feels like all my friends are 8 years old. They never take anything seriously. If I try talking about RA, they either chance the topic or throw a joke about it. Well, to be fair, maybe they just don't know what to say and do that instead. I don't know....

By the way, do you go to physiotherapy or something like that? I've been going for about 2-3 years now. Mostly it's for my knees, but I do some stuff to help my wrist, too....

 

[Koski]

Actually, I just checked... And I'm running with Methotrexan again :S Aah, silly me... Anyway, have you heard of Ondansetron? That's the medicine that helps against the nausea. Works for me...sometimes...

And, yeah, that year was hell for me. I got RA, went to my first knee surgery(Took me all summer to get back up and the best part? The operation didn't work. I've been through 3 operations now and NONE of them worked) and I was bullied at school. That was the first and last time(for now) when I was really depressed. Almost commited suicide. And nope, didn't get any psychiatric help, I was too scared to talk to anyone.

If you think you have something in your jaw, talk about it. Really, next time you see your doctor, tell it. I did and when they did, they found out RA was spread all the way there. Luckily I didn't have to go through a surgery.

And about my friends....well, they're all boys, so how could you think some of them would be mature? Sometimes it feels like all my friends are 8 years old. They never take anything seriously. If I try talking about RA, they either chance the topic or throw a joke about it. Well, to be fair, maybe they just don't know what to say and do that instead. I don't know....

By the way, do you go to physiotherapy or something like that? I've been going for about 2-3 years now. Mostly it's for my knees, but I do some stuff to help my wrist, too....

No, I eat something called Omeprazol, it doesn't do much. I'll keep that medication in mind when I speak to my doctor again. Do you ever find that you get tired when you take methotrexate? That happens to me every week I take it.

And wow, three knee surgeries? You are one tough fellow. God, I am really sorry to hear this, it breaks my heart. It's gotta be hard to deal with a disease on top of everything else. I hope you pulled through it okay.

My doctor was very intent on getting me a time with the on-staff psychiatrist they had especially for helping RA patients accept their disease. I guess I was lucky to get such a committed hospital staff.

Boys will be boys, I guess. My close friends are all girls and I talk to them about most things, so it wasn't much of a step from that to talk about how bad I felt during that first year. Still, have you ever talked to your friends that you could really use some help and understanding with this and that it's serious business? I know I joke a lot about my disease, but it's a coping method for me, and I only allow close friends to joke about it, only my best friend is allowed to joke about me being handicapped in a way that I think it's funny. I don't know if that works for you, though.

Don't know how well it would work for you, but well, sit down and say it out loud?

I used to get physiotherapy for about six months, until it was decided I was healthy enough to exercise on my own. I should probably go a gym and I know I'd feel much better from working out. But I am the uncrowned queen of procrastination, watcha gonna do.

 

[MrShowerHead]

No, I eat something called Omeprazol, it doesn't do much. I'll keep that medication in mind when I speak to my doctor again. Do you ever find that you get tired when you take methotrexate? That happens to me every week I take it.

And wow, three knee surgeries? You are one tough fellow. God, I am really sorry to hear this, it breaks my heart. It's gotta be hard to deal with a disease on top of everything else. I hope you pulled through it okay.

My doctor was very intent on getting me a time with the on-staff psychiatrist they had especially for helping RA patients accept their disease. I guess I was lucky to get such a committed hospital staff.

Boys will be boys, I guess. My close friends are all girls and I talk to them about most things, so it wasn't much of a step from that to talk about how bad I felt during that first year. Still, have you ever talked to your friends that you could really use some help and understanding with this and that it's serious business? I know I joke a lot about my disease, but it's a coping method for me, and I only allow close friends to joke about it, only my best friend is allowed to joke about me being handicapped in a way that I think it's funny. I don't know if that works for you, though.

Don't know how well it would work for you, but well, sit down and say it out loud?

I used to get physiotherapy for about six months, until it was decided I was healthy enough to exercise on my own. I should probably go a gym and I know I'd feel much better from working out. But I am the uncrowned queen of procrastination, watcha gonna do.

Yep, I think Methotrexan's side effect is tiredness. But, well... I'm tired everyday. Normally I sleep about 4-5 hours per day. Again, something you get used to.

Not sure if I'm through of it yet. I mean, I'm not depressed anymore, no. But my doctors said that I'll have to go through even a bigger surgery in the near future for both of my knees. And if those fail.....I don't want to think about that

Oh and if you're wondering, I don't have RA on my knees. It's luxating patella.
http://en.wikipedia.org/wiki/Luxating_patella

Accepting my disease...that took me awhile to achieve. I did it a bit different way. I achieved a mindset, where I just....don't give a crap. I just say "screw these!" and be on my way. Don't know how I do it, but it helps.

It's hard to find good help for RA thesedays. At least here in Finland. Heinola's Rheumatoid Hospital got taken down last year and now there's not that many rheumatologists around. Nowdays I have to go to Helsinki to a normal hospital for my treatment. Good thing I only have that treatment week once in a year

Eh... I mean no dissrespect to my friends, but I...really can't see myself do something like that with them. I've tried, but all I got was "Aha, alright, no way?" Sometimes I think that it's my fault.When I got this, my personality changed and I began to throw jokes about everything. I think people still think I'm like that.... Argh, I don't know... I'm so confused right now

Oh and yeah, my friends makes jokes about my condition all the time. Sometimes they don't feel like jokes, to be honest. Hell, one time my friend kicked me in the knee, thus dislocating it. On purpose. And did they help me up? Nope, just laughed at me.

I go to physiotherapy/pretty expensive one, too) every week. I should be doing something at home too, but....well, lets say I've skipped it a few times. I don't feel motivated.

God, I can make everything sound dramatic and depressive...
And I like how this kinda switched around.... Well, I always like to talk to someone who understands about this...

 

[Koski]

Yep, I think Methotrexan's side effect is tiredness. But, well... I'm tired everyday. Normally I sleep about 4-5 hours per day. Again, something you get used to.

Not sure if I'm through of it yet. I mean, I'm not depressed anymore, no. But my doctors said that I'll have to go through even a bigger surgery in the near future for both of my knees. And if those fail.....I don't want to think about that

Oh and if you're wondering, I don't have RA on my knees. It's luxating patella.
http://en.wikipedia.org/wiki/Luxating_patella

Accepting my disease...that took me awhile to achieve. I did it a bit different way. I achieved a mindset, where I just....don't give a crap. I just say "screw these!" and be on my way. Don't know how I do it, but it helps.

It's hard to find good help for RA thesedays. At least here in Finland. Heinola's Rheumatoid Hospital got taken down last year and now there's not that many rheumatologists around. Nowdays I have to go to Helsinki to a normal hospital for my treatment. Good thing I only have that treatment week once in a year

Eh... I mean no dissrespect to my friends, but I...really can't see myself do something like that with them. I've tried, but all I got was "Aha, alright, no way?" Sometimes I think that it's my fault.When I got this, my personality changed and I began to throw jokes about everything. I think people still think I'm like that.... Argh, I don't know... I'm so confused right now

Oh and yeah, my friends makes jokes about my condition all the time. Sometimes they don't feel like jokes, to be honest. Hell, one time my friend kicked me in the knee, thus dislocating it. On purpose. And did they help me up? Nope, just laughed at me.

I go to physiotherapy/pretty expensive one, too) every week. I should be doing something at home too, but....well, lets say I've skipped it a few times. I don't feel motivated.

God, I can make everything sound dramatic and depressive...
And I like how this kinda switched around.... Well, I always like to talk to someone who understands about this...

That.. might have something to do with it. I get a little unsure about that, I have some kind of weird borderline-insomnia where it takes me 1-2 hours every night to fall asleep. So I'm usually tired all the time too.

It's a tough process, it really is. I'm not sure I'm completely through it yet, either. When I feel good, I feel great and the world is at my feet and I can do anything. But when I get a bad period, I can't even get up in the morning becauseI feel like absolute shit and my life is never going to lead anywhere.

Best of luck to you and these surgeries! I wish you the best! (>u<)b

I think my friend has something similar to your knees, and all I can do is give you my condolences and I hope things work out for you.

If I might be a little blunt, and please don't take offense, but this is something that you really need to face head-on and deal with. Chances are big it'll come back to bite you later, I would really recommend getting some psychiatric help; it really paid off for me. Something that I needed have told to me that it's okay to be sick and it's okay to feel bad sometimes. And it's definitely okay to be depressed, because, come on, you have a damn chronic disease that's going to fuck with your life no matter what you do. It's pretty damn depressing and everyone with a chronic disease have every right to be sad.

Oh, man Finland, right across from here. Sort of. If I weren't on Sweden's west coast. It's pretty easy to get help for this in Sweden, and most of the rheumatologists here are easy to get a hold of and get help from. Even the smaller towns here seem to have a rheumatology department here. I'm surprised, but happy because it doesn't tie me to one place. Gives me hope that I might be able to fulfill my dream of studying abroad.

It is a way of coping, and I can definitely understand why you would act like that in front of your friends. But you can't really blame yourself for it, I mean, this is pretty life-changing stuff to deal with, and goddamn it's not easy. It's really too bad that your friends act this way with you. Allow yourself to be sad in front of your friends, maybe? I know it's pretty hard to show that amount of weakness in front of other people, heck, I have troubles showing it in front of my best friend.

OH GOD. I cringed reading that. :C That did not sound like a very friendly gesture at all. Wow. Ouch. Dear god, man. You really sound like you need a hug. (Yes, I'm a very emotional woman, why do you ask? >__>)

Same here. Been meaning to get a gym card or something, but bleh. Don't feel like exercising while I'm in pain. It's a Catch 22.

Haha. Don't worry about that. From the looks of it, we both need to talk to someone in the same situation.
So, the advisor has become the advice-taker. XD

 

[MrShowerHead]

That.. might have something to do with it. I get a little unsure about that, I have some kind of weird borderline-insomnia where it takes me 1-2 hours every night to fall asleep. So I'm usually tired all the time too.

It's a tough process, it really is. I'm not sure I'm completely through it yet, either. When I feel good, I feel great and the world is at my feet and I can do anything. But when I get a bad period, I can't even get up in the morning becauseI feel like absolute shit and my life is never going to lead anywhere.

Best of luck to you and these surgeries! I wish you the best! (>u<)b

I think my friend has something similar to your knees, and all I can do is give you my condolences and I hope things work out for you.

If I might be a little blunt, and please don't take offense, but this is something that you really need to face head-on and deal with. Chances are big it'll come back to bite you later, I would really recommend getting some psychiatric help; it really paid off for me. Something that I needed have told to me that it's okay to be sick and it's okay to feel bad sometimes. And it's definitely okay to be depressed, because, come on, you have a damn chronic disease that's going to fuck with your life no matter what you do. It's pretty damn depressing and everyone with a chronic disease have every right to be sad.

Oh, man Finland, right across from here. Sort of. If I weren't on Sweden's west coast. It's pretty easy to get help for this in Sweden, and most of the rheumatologists here are easy to get a hold of and get help from. Even the smaller towns here seem to have a rheumatology department here. I'm surprised, but happy because it doesn't tie me to one place. Gives me hope that I might be able to fulfill my dream of studying abroad.

It is a way of coping, and I can definitely understand why you would act like that in front of your friends. But you can't really blame yourself for it, I mean, this is pretty life-changing stuff to deal with, and goddamn it's not easy. It's really too bad that your friends act this way with you. Allow yourself to be sad in front of your friends, maybe? I know it's pretty hard to show that amount of weakness in front of other people, heck, I have troubles showing it in front of my best friend.

OH GOD. I cringed reading that. :C That did not sound like a very friendly gesture at all. Wow. Ouch. Dear god, man. You really sound like you need a hug. (Yes, I'm a very emotional woman, why do you ask? >__>)

Same here. Been meaning to get a gym card or something, but bleh. Don't feel like exercising while I'm in pain. It's a Catch 22.

Haha. Don't worry about that. From the looks of it, we both need to talk to someone in the same situation.
So, the advisor has become the advice-taker. XD

See, this is why I don't post much around these parts...I suck at giving advices :L

I don't know if Methotrexan does something like that... Maybe I should ask. I would really like some sleep, since I have to wake up at 5:45 Am everyday so I can make it in time to school

Thanks for the support And no, you're not too blunt or anything, what you're saying is the truth. I should just stop being a ***** and grow some stones... I've seen younger kids than me, who have much worse condition than me and they seem happy. I feel like I don't deserve this body....

Okay, okay, slipping to depression again... *slaps himself*...okay, lets continue...

I get what you mean by "okay being depressed about his", but I don't want people to think I use that as an excuse for being sad or to get some sympathy. Sometimes I get a feeling they might think like that... Just another reason why we don't talk about this a lot.

Oh and if you're wondering, all these friends of mine are 16-17 years old (And I'm 16) So, maybe that explains some of the stuff they do....

Good to hear it's good over there. Because it's not that great here. Seriously, it feels people are trying to make RA treatment as hard as possible here. 2 weeks ago, they tried making it illegal for school nurses for giving Methotrexan injections. Because "that's not their job" Luckily, it didn't get through, but still... That's why that RA specialiced hostipal shutted down. It was taken down.

I'm still quite confused about what I want from my friends...I mean, I would like some support, but I don't expect any support from them at the moment. Right now I would want them to stop making jokes about it. Sure, some banter is funny, but when you do that for several years, it can get quite annoying. But, well... I have to think about this...

Maybe that's what I need...A hug. Good thing they don't do something that severe anymore. But that still is in my memories.

So...how about that hug, huh?

 

[Koski]

See, this is why I don't post much around these parts...I suck at giving advices :L

I don't know if Methotrexan does something like that... Maybe I should ask. I would really like some sleep, since I have to wake up at 5:45 Am everyday so I can make it in time to school

Thanks for the support And no, you're not too blunt or anything, what you're saying is the truth. I should just stop being a ***** and grow some stones... I've seen younger kids than me, who have much worse condition than me and they seem happy. I feel like I don't deserve this body....

Okay, okay, slipping to depression again... *slaps himself*...okay, lets continue...

I get what you mean by "okay being depressed about his", but I don't want people to think I use that as an excuse for being sad or to get some sympathy. Sometimes I get a feeling they might think like that... Just another reason why we don't talk about this a lot.

Oh and if you're wondering, all these friends of mine are 16-17 years old (And I'm 16) So, maybe that explains some of the stuff they do....

Good to hear it's good over there. Because it's not that great here. Seriously, it feels people are trying to make RA treatment as hard as possible here. 2 weeks ago, they tried making it illegal for school nurses for giving Methotrexan injections. Because "that's not their job" Luckily, it didn't get through, but still... That's why that RA specialiced hostipal shutted down. It was taken down.

I'm still quite confused about what I want from my friends...I mean, I would like some support, but I don't expect any support from them at the moment. Right now I would want them to stop making jokes about it. Sure, some banter is funny, but when you do that for several years, it can get quite annoying. But, well... I have to think about this...

Maybe that's what I need...A hug. Good thing they don't do something that severe anymore. But that still is in my memories.

So...how about that hug, huh?

Ahh.. School, I remember those carefree days. I used to be a disinterested student with RA, now I'm just a jobless bum who should be on sick leave.

I can only relate and use my own experiences in this, but it sounds like you have some years left of your acceptance period. And by god, I know what you mean by that, I HATE HATE HATE excusing myself because my RA is acting up, because it really always makes me feel like I'm fishing for sympathy. And that I'm weak. And pathetic. I could do an entire book on how crappy my confidence gets in a down period. But you know what? No, you are not fishing for sympathy, you are sick and you have every damn right to feel sick and feel bad about that. If you feel they'd start thinking like that, explain that you are honestly not feeling well and they need to respect that. Dunno if this is a particularly female thing or whatnot, but I find respect like that is important amongst friends.

And yes, I can see how their age might affect this. It just seems really extreme to me, but then again, I'm not 16 and not male. I might be a little biased.

Geez. RA at your age? Wow. I'm sorry, man. That sucks. Hard. I thought getting diagnosed at 18 was bad enough. My advice to you is get this cleared up now and get help with this now, you probably don't want this hanging over your head for the next couple of years.

Wow, does your government have a personal vendetta against people with RA or something? It kind of sounds like it. .__. Honestly, I'd rather trust my nurse with giving injections than trusting some kid with a needle. Do you get yours through injections? I take mine through tablets, I did the injection thing for a while (eugh never never never again I can't stand piercing my own skin) but tablets ended up being better for me. Why on earth would they take down a hospital like that? It's kind of important. Rheumatic diseases aren't exactly rare.

Honestly; tell them that you do not think it's funny that they joke about this. What you have is a very painful disease that's going to be with you for the rest of your life. Joking to make it less serious is fine, but make your friends understand the seriousness behind this disease. I allow my friends to joke about it with me, but they all know where my limit goes, and they all know that this is a serious matter. If they keep joking about it try and dismiss it, you say 'No, I'm serious. This isn't funny. I'd like for you to stop making fun of it.'

NNNNGHHH

I can't give you a hug in person.

BUT

You'll have to make-do with an internet hug.

*INTERNET HUG'D*

Hang in there, I'm rooting for you!

 

[benjai]

I'm so sorry for butting into your thread, Koski, but man. I just want to give you a hug Mr Showerhead. I'm Koski's best friend and I too am suffering from chronic illness, but I've still not quite accepted it. Of course, I didn't get anything as cool and provable as an actual auto-immune disease, I just got RA's less cool cousin, fibromyalgia.

However, I was there throughout Koski's entire coping process (and am officially the only person allowed to call her a cripple!) and well, it takes time and there is no way anyone can do it without support. I've been diagnosed for a year and still completely ignore that I'm sick half of the time despite eating like ten pills a day, NOT counting the amount of pain killers I consume. But really, support from anywhere you can pull it is absolutely necessary. Especially if you're depressed, I have problems with anxiety and depression on top of my chronic illness (and potential other chronic illness) and friends and family are the shit.

I have the great luxury of having the bestest bff in the world and the most patient and understanding and loving boyfriend too. But hey, if your IRL friends aren't there for you, there are always a million friends right here on the Internet.

 

[MrShowerHead]

Ahh.. School, I remember those carefree days. I used to be a disinterested student with RA, now I'm just a jobless bum who should be on sick leave.

I can only relate and use my own experiences in this, but it sounds like you have some years left of your acceptance period. And by god, I know what you mean by that, I HATE HATE HATE excusing myself because my RA is acting up, because it really always makes me feel like I'm fishing for sympathy. And that I'm weak. And pathetic. I could do an entire book on how crappy my confidence gets in a down period. But you know what? No, you are not fishing for sympathy, you are sick and you have every damn right to feel sick and feel bad about that. If you feel they'd start thinking like that, explain that you are honestly not feeling well and they need to respect that. Dunno if this is a particularly female thing or whatnot, but I find respect like that is important amongst friends.

And yes, I can see how their age might affect this. It just seems really extreme to me, but then again, I'm not 16 and not male. I might be a little biased.

Geez. RA at your age? Wow. I'm sorry, man. That sucks. Hard. I thought getting diagnosed at 18 was bad enough. My advice to you is get this cleared up now and get help with this now, you probably don't want this hanging over your head for the next couple of years.

Wow, does your government have a personal vendetta against people with RA or something? It kind of sounds like it. .__. Honestly, I'd rather trust my nurse with giving injections than trusting some kid with a needle. Do you get yours through injections? I take mine through tablets, I did the injection thing for a while (eugh never never never again I can't stand piercing my own skin) but tablets ended up being better for me. Why on earth would they take down a hospital like that? It's kind of important. Rheumatic diseases aren't exactly rare.

Honestly; tell them that you do not think it's funny that they joke about this. What you have is a very painful disease that's going to be with you for the rest of your life. Joking to make it less serious is fine, but make your friends understand the seriousness behind this disease. I allow my friends to joke about it with me, but they all know where my limit goes, and they all know that this is a serious matter. If they keep joking about it try and dismiss it, you say 'No, I'm serious. This isn't funny. I'd like for you to stop making fun of it.'

NNNNGHHH

I can't give you a hug in person.

BUT

You'll have to make-do with an internet hug.

*INTERNET HUG'D*

Hang in there, I'm rooting for you!

Actually, I am quite worried about my future. How can I get things running on my own, when I move out? I really don't know...

I hate the feeling too, like I said. Feels like I give up, or something. Some of my friends try to keep up that "machoman" attitude, so when they see me do that... Doesn't end well. And I know how that feeling feels. Sometimes I just....start crying out of nowhere.

Yeah, about my age.... This might sounds funny, but... some parts of me say that I'm grateful for having RA. What I mean is thanks to it, I've met some really great people, had some really cool experiences and grown up alot. Maybe a bit too much, I could say... Of course I want this fixed, but hey, everything has a positive side, right?

I don't know what they try to achieve by doing this.., Maybe it's all just a business. I've heard that the staff from other hospitals wouldn't accept patiens, if they visited that RA hospital. Seriosuly, we live in a fucked up world.

And again about my friends... The problem is, I think, is that they don't really care or want to talk about it. I've said "Would you kindly stop making those jokes? This is somewhat serious" they just say "okay" and forget about that in few days.

Well, to be fair, they haven't made many jokes about this for awhile, maybe they've learned. I hope so...

Aww, Internet hugs...My favorite

So I guess that's that...No, wait...

I'm so sorry for butting into your thread, Koski, but man. I just want to give you a hug Mr Showerhead. I'm Koski's best friend and I too am suffering from chronic illness, but I've still not quite accepted it. Of course, I didn't get anything as cool and provable as an actual auto-immune disease, I just got RA's less cool cousin, fibromyalgia.

However, I was there throughout Koski's entire coping process (and am officially the only person allowed to call her a cripple!) and well, it takes time and there is no way anyone can do it without support. I've been diagnosed for a year and still completely ignore that I'm sick half of the time despite eating like ten pills a day, NOT counting the amount of pain killers I consume. But really, support from anywhere you can pull it is absolutely necessary. Especially if you're depressed, I have problems with anxiety and depression on top of my chronic illness (and potential other chronic illness) and friends and family are the shit.

I have the great luxury of having the bestest bff in the world and the most patient and understanding and loving boyfriend too. But hey, if your IRL friends aren't there for you, there are always a million friends right here on the Internet.

I.....I'm....

Jeez...You have no idea what that meant to me. Did you create that account just to say this? This is...wow, is that a tear...?

You two are awesome, you know that? You've probably been the most supportive people I've met. No, really...

Man, I didn't know this would turn out to be this way. Really, just...thanks. Thank you.

I can now go to sleep in happiness. We can continue this conversation later, okay? Because I would love that

 

[benjai]

I.....I'm....

Jeez...You have no idea what that meant to me. Did you create that account just to say this? This is...wow, is that a tear...?

You two are awesome, you know that? You've probably been the most supportive people I've met. No, really...

Man, I didn't know this would turn out to be this way. Really, just...thanks. Thank you.

I can now go to sleep in happiness. We can continue this conversation later, okay? Because I would love that

Umm... *awkward* well yeah I kind of did get an account just to post in this thread. I just got invested in an Internet stranger. You just seem so sweet and kind and I feel so bad for you. I care about you, Mr Showerhead! (I still can't get over how weird it is to type that!)

I hope you get a good night's sleep and that I do too!

HUGS TO ALL CHRONICALLY ILL PEOPLE. Except Koski. I'm not hugging you. Once a day is enough.

 

[MrShowerHead]

Umm... *awkward* well yeah I kind of did get an account just to post in this thread. I just got invested in an Internet stranger. You just seem so sweet and kind and I feel so bad for you. I care about you, Mr Showerhead! (I still can't get over how weird it is to type that!)

I hope you get a good night's sleep and that I do too!




HUGS TO ALL CHRONICALLY ILL PEOPLE. Except Koski. I'm not hugging you. Once a day is enough.

Hehe, sorry, didn't mean to take it that far

It's just that...I get this kind of treatment very rarely. This is the best support I've got so far. On the Internet and in real life.

And yes, I did get a good night's sleep after this Thank you

Oh and give a hug to Koski from me, when you see her.

 

[Koski]

Actually, I am quite worried about my future. How can I get things running on my own, when I move out? I really don't know...

I hate the feeling too, like I said. Feels like I give up, or something. Some of my friends try to keep up that "machoman" attitude, so when they see me do that... Doesn't end well. And I know how that feeling feels. Sometimes I just....start crying out of nowhere.

Yeah, about my age.... This might sounds funny, but... some parts of me say that I'm grateful for having RA. What I mean is thanks to it, I've met some really great people, had some really cool experiences and grown up alot. Maybe a bit too much, I could say... Of course I want this fixed, but hey, everything has a positive side, right?

I don't know what they try to achieve by doing this.., Maybe it's all just a business. I've heard that the staff from other hospitals wouldn't accept patiens, if they visited that RA hospital. Seriosuly, we live in a fucked up world.

And again about my friends... The problem is, I think, is that they don't really care or want to talk about it. I've said "Would you kindly stop making those jokes? This is somewhat serious" they just say "okay" and forget about that in few days.

Well, to be fair, they haven't made many jokes about this for awhile, maybe they've learned. I hope so...

Aww, Internet hugs...My favorite

You shouldn't worry about it that much. Sure, this thing is going to affect the rest of your life, but don't ever let it stop you from doing what you want to do. I live on my own (benjai is mah roommate! 8V) and I'm trying to get in to a comic school, RA or not, I'm going to to do what I want with my life! *determined pose* You should do the same. One thing's for sure, though, I'd be lost without benjai (memory issues from the remicade, honestly, I'd forget to buy food without her), so you should always make sure to keep friends close. Give yours a couple of years, they'll come to it.

In a way it's kind of funny how it works out that way. I feel like that too sometimes, I've always figured it kind of like coming face-to-face with your own mortality when you get something like this. Which in it's own lets you figure out a lot of things for yourself. So yeah, I guess it does have a positive side? I'd like to think so. Gotta keep that endless optimism going!

WAT. Seriously. wat. I guess Finland just hates rheumatism. You should move to Stockholm instead, their hospital's rheumatology department is awesome.

Maybe the only thing you can do is wait a little, believe it or not, but RA takes a while to sink in for everyone. One of my closest friends confessed to me when I mentioned the five stages of acceptance to her that she'd gone through something similar when I got sick. Same goes for my family and especially my sister. GIve them a couple of years to understand this and hopefully things will turn out for the better. Otherwise, they're kind of jerks. :T

YOU GET AS MANY INTERNET HUGS AS YOU WANT, MRSHOWERHEAD.

HUGS TO ALL CHRONICALLY ILL PEOPLE. Except Koski. I'm not hugging you. Once a day is enough.

INTERNET STRANGER COMMANDS YOOUUU. HUUUG MEEEEE.

 

[MrShowerHead]

You shouldn't worry about it that much. Sure, this thing is going to affect the rest of your life, but don't ever let it stop you from doing what you want to do. I live on my own (benjai is mah roommate! 8V) and I'm trying to get in to a comic school, RA or not, I'm going to to do what I want with my life! *determined pose* You should do the same. One thing's for sure, though, I'd be lost without benjai (memory issues from the remicade, honestly, I'd forget to buy food without her), so you should always make sure to keep friends close. Give yours a couple of years, they'll come to it.

In a way it's kind of funny how it works out that way. I feel like that too sometimes, I've always figured it kind of like coming face-to-face with your own mortality when you get something like this. Which in it's own lets you figure out a lot of things for yourself. So yeah, I guess it does have a positive side? I'd like to think so. Gotta keep that endless optimism going!

WAT. Seriously. wat. I guess Finland just hates rheumatism. You should move to Stockholm instead, their hospital's rheumatology department is awesome.

Maybe the only thing you can do is wait a little, believe it or not, but RA takes a while to sink in for everyone. One of my closest friends confessed to me when I mentioned the five stages of acceptance to her that she'd gone through something similar when I got sick. Same goes for my family and especially my sister. GIve them a couple of years to understand this and hopefully things will turn out for the better. Otherwise, they're kind of jerks. :T

YOU GET AS MANY INTERNET HUGS AS YOU WANT, MRSHOWERHEAD.

Maybe, maybe... I'm not that worried about if I don't get to do something I want in the future.I don't even know what I want to do...It's more of how I'll manage in general(Yes, my self confidence's very low)... Maybe I'm just thinking about that too early.

Also, I've been talking to this Finnish girl, who has diagnosed with RA not long ago. I can try supporting her and vice versa.

When I've been talking about my friends here, I wasn't counting the ones I got from this new school. They don't mock me or anything, but....Well, I don't get support from them either. I'm a bit like a lone wolf, to be honest. And some of them are 6-7 years older than me. I feel...awkward trying to talk to someone older than me about this. Doesn't seem right to me.

I guess Rheumatism's just business here. You can't as good as a treatment you could get from the RA hospital, Helsinki has opened Orton hospital for RA patiences. I'll be going there for a week in the summer again. Again, not as good as the one in Heinola, but it's better than nothing. And moving to Stockholm? Sorry, my Swedish isn't that good Jag talar inte svenska

I know that it might take time for my friends to understand, but it's been like this from the start. Nowadays I kinda don't expect anything from them anymore. I don't think that's a good sign...I feel like an asshole right now. Here I am, talking shit about my friends behind their back. How can I expect support from them when I do stuff like this?

Eh....yeah, still very confused what to do with my friends... Right now, I'm using music as my support. That's almost all I got.Well, that and you two, for now. Wherever I go, I have my mp3 player with me and my headphones on. People say I listen to music way too much(I'm listening right now, actually. And I'm not really following what's happening in class, either ) They don't really understand how much music means to me. It saved me from suicide once. I owe my life to music.

HUGS TO ALL CHRONICALLY ILL PEOPLE. Except Koski. I'm not hugging you. Once a day is enough.

INTERNET STRANGER COMMANDS YOOUUU. HUUUG MEEEEE.

And make it a good one

 

[Daniel Castro]

Awww... You guys reminded me of this:
http://www.makeuseof.com/tech-fun/internet-hug/

Thanks a lot for taking your time to answer this, and yes, I would love for you to ask your girlfriend how she handles the thought of being sick for the rest of her life. It'd mean a lot.

I got RA too. I was diagnosed about 4-5 years ago. It can be a pain in the ass, I know. I've been treated with Trexan for about 3-4 years now. Every Friday I get that injection. Gets quite annoying.

Something that really helps me is music. You kinda forget about that for awhile when you listen to something. Also, can you talk about this to any of your friends? They might be able to give you some support.

May I ask what part of your body is suffering from this? You said legs, but do you mean ankles or knees or something else?
Sorry for not really giving any advice, I'm not used to do this :S

Oh, hooray, fellow RA person!

Can't say I've ever heard of Trexan, does it work? Remicade used to work for me, but I still have to take painkillers to compliment it. And yeah, that sounds really annoying. Geez, I thought getting IV drips every 7th week was annoying.

I abuse music. I'm an artist at heart and I draw a lot, most of my inspiration comes from music, so there's no lack of that. Only sucks that pain is such a major inspiration-killer. And I talk to it to my friends and family, and I always try to be open about my RA to them. as I mentioned above, I have support from everyone close to me, plus my best friend is always there to hug me and listen when I need it.

For me, it's my fingers, toes and occasionally the muscles in my hip. Gets annoying to try and hold a pen when it feels like there are nails shoves in to my joints. And don't worry at all, it feels really good to talk to someone who understands. I do have a lot of people to turn to with this, but the problem is that no one really understands what it's like, so sometimes you just want to talk to people who understand it.

Thanks a lot for answering.

Anyway, I'll be back tomorrow at home (I'm a civil engineer working out of town), so I'll ask my girlfriend to write me her side of the story, but she'll be speaking through me since she's not fluent in english.

She mostly went trough pills and injections and she is still taking an every day medication, but I'd ratter let her tell you the whole story; I may have lived this experience beside her, but her firsthand version should be way more accurate.

Her rheumatologyst also suggested her that she should do more excercise, and since these days she has a very active life at work she may have that covered up until the weather heats up again and she gets back to swimming... Excersice I recommend to you guys, since it doesn't have an impact on your joints, muscles and body in general.

Anyway, see you guys later, but before that:

To Koski: How about showing us your artwork? I'd love to see your music-inspired drawings.

To MrShowerhead: Pat Pat*...
*That's an Internet pat on the shoulder, get it?
I guess even an Internet hug from a "almost twice your age"-old guy would be weird, uh?

 

[benjai]

Oh, how I wish I could exercise like regular human beings...

A side effect of my specific body is that I, well, I break. I break from exercising. I did go swimming, twice a week for two months, and then I managed to inflame. My. Achilles. Heel. It broke - I couldn't walk on it for two weeks.

My body has a tendency of doing things that way. I also have a tendency to over-work myself, but right now for example I'm restricted to lying on the couch because I can't support myself on my left leg because - wait for it - I went on a walk yesterday. I walked for maybe ~an hour and a half and now I can't use that leg. Because of knee issues (dislocation for no reason whatsoever twice in the past) I don't dare run or anything like that, and also it causes me a lot of pain.

I'm on medication for the pain and in physical therapy to learn how I can exercise and to strengthen my muscles a bit. Hopefully I'll learn enough to be able to go to a gym on my own come summer time.

Blargh.