This.

Gracie

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Feb 13, 2013
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Invisible Illness Invisible Friends - RheumatoidArthritis.net

A-fuckingmen.

They just don't get it. Even with Mr. Gracie having it in his knee, he still refuses to understand that I have it in BOTH knees, BOTH wrists, BOTH hands, BOTH ankles, one hip. To get him to "get it", I say "go to the kitchen and get your sandwich I made (that took forever cuz it hurt like hell)...but do it ON YOUR KNEE. Try doing that 3 times a day and let me know how you feel" and he STILL doesn't get it. I bring his plate of food to him, wrist throbbing, and he oh-so-slowly moves stuff around on his pc desk to make room for it, then turns to the tv, then slowly turns back around to take the plate that is now tilting dangerously because my wrists are giving out. And when I tell him HURRY..I can't hold it much longer...he yells at me because his "show" is on and he can't miss one word of it. So I take his yelling, go to my room, close the door, and don't let him see my spurting eyeballs cuz I'll be damned if I let him see me cry from the pain. Not from him yelling...from the FUCKING PLATE I was holding.

He gets mad at me when I won't go anywhere. He doesn't "get it" that I can't walk very far without my hip turning into a ball of flame. My friends don't "get it" that I won't go shopping because my ankles swell up, my toes freeze up in cramps, my hip burns like hellfire and I get tired really easy.

It's frustrating.

Just had to rant about it for a sec. I was so pissed earlier from him yelling at me, I actually went to craigslist looking for a room to rent that I can afford on my piddly SS. Ha. I would have to live in my van. I'm not pissed now. He can't help it if he lives in another world and just flat doesn't "get it". I guess.
 
This part really rang a bell with me:

To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.

Except for me, its been since 2010. Prior to that year, I was rolling 75lb persian rugs out on the sidewalk for customers to look at, then dragging them back in the store if they didn't like the pattern, managing an apartment complex and doing all the landscaping myself, painting and cleaning each apartment as it came empty, holding down a full time job, hauling furniture to and from the store by myself, whacking trees, and in general doing everything that most women would freak out about cuz they would break a fingernail. Been doing that stuff since I was 17 years old and then POOF. My body started to break. Got thru Breast Cancer, too. I'm blessed my fingers work well enough to type and I can still do stuff in the yard but I pay dearly for it every night. I hurt all the fucking time. Just like that lady blogged about.

I miss the other me. A lot.

Ok. Someone give me some cheese to go with my whine.
 
I celebrated 20 years of Chronic Fatigue by playing basketball on Monday night. I took it up two years ago because one of my sons decided it was more fun than football...BLASPHEMY.....but it IS a lot of fun. I also took up tennis about six months later....and yes: it is a case of mind over matter. It just doesn't matter that it hurts like hell AFTERWARDS.

But we're tough as old boots, Gracie; glad to see there are still some of us around. (I'm only a young 58)

Greg
 
If I swung a tennis racket, I would be screaming. I can bend my wrists, but not if any weight is attached. I'd die playing basketball. flat out die of shock from the pain. I CAN take the dogs for a walk but I have to have a Gandalf Staff with me or a fallen tree trunk to rest my hip on when it starts burning a hole thru the skin. I am limited but not quite wheelchair bound yet.
It's depressing. My mind says "yes you can" my body says "lol. No".
 
My mind says "yes you can" my body says "lol. No".

I had some cortisone a few years back for the shoulders...they worked well until a month ago. Am lining up for more; not happy about that...but with I will have full movement; without my backhand slice is gone...unless I want a stabbing pain every time I do it. lol

OK: I put up with the stabbing pain, but it's the "recovery" which is still the bother. Nearly three days for just a game of BBall, while I try to limit the tennis to about two hours a session. My doctor says I'm quite mad.

Greg
 
I hate the flareup modes. Been in flare up for almost a week but last night..it went away. I planted bell peppers, more cauliflower, another tomato plant and yellow gooseneck squash; took the dogs this morning for their run at the beach; toodled around in a thrift store; whacked a limb shading the squash that wants full sun and replanted a banana plant that is taller than I am. No pain. I hope it doesn't rear its ugly head tonight.

This is why RA is so confusing to folks that don't have it. Those that do have days they can do what they USED to be able to do. Then BAM! They are down for a week or two in full flareups, tired, depressed, sad, etc. Then it lessens off and we are back to "normal". Which is why many thing RA folks are lazy..or lying...or crazy.
 
This part really rang a bell with me:

To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.

Except for me, its been since 2010. Prior to that year, I was rolling 75lb persian rugs out on the sidewalk for customers to look at, then dragging them back in the store if they didn't like the pattern, managing an apartment complex and doing all the landscaping myself, painting and cleaning each apartment as it came empty, holding down a full time job, hauling furniture to and from the store by myself, whacking trees, and in general doing everything that most women would freak out about cuz they would break a fingernail. Been doing that stuff since I was 17 years old and then POOF. My body started to break. Got thru Breast Cancer, too. I'm blessed my fingers work well enough to type and I can still do stuff in the yard but I pay dearly for it every night. I hurt all the fucking time. Just like that lady blogged about.

I miss the other me. A lot.

Ok. Someone give me some cheese to go with my whine.

Serious question: tried pot?
 
If you're in pain, seek relief. If you begin using your pain as an excuse you become an unbearable burden to everyone around you and the thing with Eskimos putting their old and infirm onto ice flows and shoving them off to their fate starts to make sense. Most every other animal hides their pain so predators don't come and dispatch them. That's what nature does to the weak. Yet being humans we try and care for the weak. That's all well and good, but if pain is untreatable and people are moaning and complaining about it to everyone they meet, it goes against nature to tolerate that. If your pain can't be remedied, keep it to yourself. No one wants to hear about it because it invokes our animal nature to just do away with the weak in our midst.

This is Sparta. Any perception it's anything else is your wishful thinking. But take a good look around, if your family and friends are hanging around you less and less as you complain about pain more and more, that's why. No animal is evolved to tolerate the limping howling crying member of the troop. All animals will kill their own if they appear weak and hopeless. People don't do that but they do avoid such people.

Not trying to be mean but sometimes we need someone to crank up their honesty setting to 100.
 
This part really rang a bell with me:

To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.

Except for me, its been since 2010. Prior to that year, I was rolling 75lb persian rugs out on the sidewalk for customers to look at, then dragging them back in the store if they didn't like the pattern, managing an apartment complex and doing all the landscaping myself, painting and cleaning each apartment as it came empty, holding down a full time job, hauling furniture to and from the store by myself, whacking trees, and in general doing everything that most women would freak out about cuz they would break a fingernail. Been doing that stuff since I was 17 years old and then POOF. My body started to break. Got thru Breast Cancer, too. I'm blessed my fingers work well enough to type and I can still do stuff in the yard but I pay dearly for it every night. I hurt all the fucking time. Just like that lady blogged about.

I miss the other me. A lot.

Ok. Someone give me some cheese to go with my whine.

Serious question: tried pot?
I don't like pot.
 
Nobody knows my pain, Delta. The only time anyone knows how bad it hurts is when I am busted crying in the back yard where I know I won't GET busted. But sometimes I do.

I am not a complainer. Except when someone gets frustrated with me for not doing something I am physically unable to do and I tell them to fuck off, which they take as me being mean. No. It's me frustrated they DON'T GET IT THAT MY HANDS CANNOT DO WHAT THEY USED TO BE ABLE TO DO.
 
Grace, my mom suffered from RA for about 25 years. At first and for a long time, it was just small things that bothered her, the downward decline was verrrry slow. She was like you, not a complainer but a 'put up with' type.

She was on Remicaid which helped tremendously. Are you on anything? She also was off and on prednisone which also helped relieve her symptoms. She took tylenol all the time and ended up on ativan for the anxiety.

I wish there was advice I could offer, but I have none. Just know that other people, well some other people, do understand more than you think because they've seen it first hand. {hugs}
 
This part really rang a bell with me:

To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.

Except for me, its been since 2010. Prior to that year, I was rolling 75lb persian rugs out on the sidewalk for customers to look at, then dragging them back in the store if they didn't like the pattern, managing an apartment complex and doing all the landscaping myself, painting and cleaning each apartment as it came empty, holding down a full time job, hauling furniture to and from the store by myself, whacking trees, and in general doing everything that most women would freak out about cuz they would break a fingernail. Been doing that stuff since I was 17 years old and then POOF. My body started to break. Got thru Breast Cancer, too. I'm blessed my fingers work well enough to type and I can still do stuff in the yard but I pay dearly for it every night. I hurt all the fucking time. Just like that lady blogged about.

I miss the other me. A lot.

Ok. Someone give me some cheese to go with my whine.

Serious question: tried pot?
I don't like pot.

It might help your arthritis.
 
This part really rang a bell with me:

To a healthy able-bodied person, this probably sounds like I am lazy and I just don’t want to work. That’s hardly the truth. I want more than anything to be able to live and work like other people do, as a productive and independent person. The reality is that I have significant physical pain on a daily basis; I have not had a pain-free day since 1997. That can make working a bit tough sometimes, never mind the other symptoms that often accompany RA: extreme fatigue, anxiety, depression, headaches, stomach issues, etc. I’m not lazy. I just don’t feel well 90-99% of the time.

Except for me, its been since 2010. Prior to that year, I was rolling 75lb persian rugs out on the sidewalk for customers to look at, then dragging them back in the store if they didn't like the pattern, managing an apartment complex and doing all the landscaping myself, painting and cleaning each apartment as it came empty, holding down a full time job, hauling furniture to and from the store by myself, whacking trees, and in general doing everything that most women would freak out about cuz they would break a fingernail. Been doing that stuff since I was 17 years old and then POOF. My body started to break. Got thru Breast Cancer, too. I'm blessed my fingers work well enough to type and I can still do stuff in the yard but I pay dearly for it every night. I hurt all the fucking time. Just like that lady blogged about.

I miss the other me. A lot.

Ok. Someone give me some cheese to go with my whine.

Serious question: tried pot?
I don't like pot.

It might help your arthritis.
It would freak me out, which causes stress, which causes flareups. Thanks, but I will pass on trying pot.
 
Grace, my mom suffered from RA for about 25 years. At first and for a long time, it was just small things that bothered her, the downward decline was verrrry slow. She was like you, not a complainer but a 'put up with' type.

She was on Remicaid which helped tremendously. Are you on anything? She also was off and on prednisone which also helped relieve her symptoms. She took tylenol all the time and ended up on ativan for the anxiety.

I wish there was advice I could offer, but I have none. Just know that other people, well some other people, do understand more than you think because they've seen it first hand. {hugs}
There is one RA specialist in this county. CenCal only pays for any particular specialist for the person in that county and since he is the only one..well. This RA specialist refuses to see me cuz I told him to go fuck himself. First time I saw him, he said I needed to be put on Symponi, which is an injection. I said I would prefer to find alternatives He insisted on Symponi. I said what other drugs are out there that you can tell me about so I can go home and inform myself which one I would feel more comfortable with? He said he was the specialist and I was to take Symponi. I said I would go home and check it out on the net. I check EVERYTHING on the net and talk to other people before I take anything. I then said "what about methotrexate?" and he said "I SAID Symponi and you will either take Symponi or never come back in this office again", so I said "are you getting a kickback from this company or something? Why are you refusing to discuss with me other options?" and that's when he said "go". So I said "fuck you" and went.
I did google Symponi. No thanks. And he is the only specialist I can see if I bow to him, which ain't gonna happen.
When my regular doc asked me why I have not seen the specialist, I told him what happened and he said "I have heard others say the same thing but I will not comment further about it" which to me means he is aware of the scamming kickbacks this fucktard is getting from that drug company.

So...I deal with it by taking nothing. Except advil. And watching what I eat. And using a shitload of ace bandages for support for my wrists, ankles and for my knees I use a knee brace I got off ebay.
 

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