Hi everyone. I havnt been here in awhile guess that means ive been good? or actually just really busy. but last few days my joints have really flared and today they are AWFUL! I cant deal with it. they are so bad, i couldnt sit in class today not only cause i was being crazy ADD but cause i was falling asleep and incredibly uncomfortable sitting at the desk. my legs are horrible, knees, and ankles mostly with some elbows, wrists and finger action going on as well. i am not having a good time and not only are they hurting but i am in a bad mood about it. last few big flares i was still in a greet mood so they were much more tolerable. when is actemra going to get approved! I need new meds, nothing works I need it. my appt for next week was canceled and i couldnt get another one till like 3 weeks, sooo im going then...new doctor, hope she will be good. i need help, or rather just some understanding people. today someone actually said to me o no you got some excersise stop complaining. I was mad that i walked all the walk to the dining hall for nothing when my joints are so bad. he didnt know my joints are bad, but still it made me mad. someone asked me HOW bad my arthritis is, they were like i mean you could just have some inflamation it doesnt have to be bad. and i was like no it affects pretty much all my joints none of the meds work....he was like well you cant be that bad you walk just fine. GRRRRRR
:( today sucks Oh little mermaid....I feel horrible for you. My advice---call your rheumy and see if they can call some painkillers in for you until they can get you on some other med. You need to get a break and get out of the pain. Maybe even some prednisone too--that can get relief quickly too. Good Luck and I hope you feel better soon!
Oh and I hate when people like to tell you to exercise----yeah right!!! And just because your walking fine--that means NOTHING!! aaaaah----they just don't understand this disease.
or rather just some understanding people. today someone actually said to me o no you got some excersise stop complaining. I was mad that i walked all the walk to the dining hall for nothing when my joints are so bad. he didnt know my joints are bad, but still it made me mad. someone asked me HOW bad my arthritis is, they were like i mean you could just have some inflamation it doesnt have to be bad. and i was like no it affects pretty much all my joints none of the meds work....he was like well you cant be that bad you walk just fine. GRRRRRR
:( today sucks [/QUOTE]
That's just it littlemermaid, many people don't get it. They just don't
think we are that bad off as one person told me, because hey you are
walking fine or you don't like you are swollen. When I get that response or any of the other I often get it makes me angry, sad, frustrated. Some days I can scrug it off and other days it's unbearable.
I hope you will get to feeling better.
thanks both of you. I AM taking painkiller....tramadol, i guess ill take some more. i have some prednisone i could call my doctor at home to see about that, my appt in a few weeks is with a new doc
[QUOTE=littlemermaid]thanks both of you. I AM taking painkiller....tramadol, i guess ill take some more. i have some prednisone i could call my doctor at home to see about that, my appt in a few weeks is with a new doc[/QUOTE]
You are so welcome. Yes, see if you can take something more. You shouldn't have to suffer. I called in to work today because my legs were bad. so swollen I think if you poked then with a pin they'd burst. Called the RD and she told me to take an extra Diclofenac. Now I will need to work on getting a letter from her regaurding my condition and days missed because I know I will here it from the supervisor on Monday. The things we have to do to get other people to understand this disease we live with. As if RA in and of itself didn't suck enough.
sorry to hear you are feeling so horrible. I hope you get to feeling better soon and find pain relief.Hey there little mermaid- missed you!
Tramadol- scramadol- that stuff is for the birds. Doesn't do a thing for me either!
You have to wait so long between RD visits then they cancel and you have to wait longer! That stinks!
The worst part of all is when you are not understood. I have finally gotten to the point where I realize it's nothing personal and that people really can't understand but it hurts just the same when you feel like people think you are kidding about how bad you are feeling.
That's why you have us! Come visit more often!
How are your grades? Are you enjoying school this year?
Hope you are feeling much better by the time you read this.
Hey thanks for all the messeges. School this year is very good at least academically. lots of friends drama though. But my classes are actually much easier/mostly cause i dont really have core classes anymore so it just seems easier. I have a huge course load but it seems like nothing in comparison to last year. I even got an A in physics! I am also working as a TA and loving it. joints are still awfull but im at least feeling a little more positive
Hoping tomorrow brings relief to your aching joints. When I was in college I had a friend with jra. She had a severe case with a lot of joint deformity. I mention this because even though we could all SEE her disease, we still and no clue what she was going through. I think about her all the time now. I wish I could tell her what a hero she was.
Even though people mean well, no one can understand chronic pain unless they've lived with it.
I hope you feel better soon I like to hear that you are doing well in school! You are a TA- wonderful!!!! Look at all you accomplish in spite of RA! What are you majoring in?
why is your dr so insistant that you wait for acterma...why doesn't he try orencia or rituxan? If he really wants you to try acterma why hasn't he found you a study to get into?My dr isnt that insistant, I am. nothing else has worked. i was allergic to humira and so i went back on enbrek. doesnt want me to try orencia or rituxan cause she is worried about fertiility and i dunno. I dont qualif for any studies cause i am sero negative, and sed rate is all good.
im majoring in biology and psychology and am hoping to go to med school :) Get yourself a really cool looking walking stick!
The next time they say you can't hurt THAT bad, you walk just fine...WHACK them a good one. Then tell them, it can't hurt that bad, you walk just fine!!!!!! :)
before I had RA I was clueless that human beings were walking around in this kind of excruciating pain and also not all of us can tolerate the pain meds. if it makes my head spin or nauseated I might as well have the pain because I will end up in the bed either way.
the difference is if you told me you were in pain, I believed you. I had nothing to compare it to but I thought it must be worst than whatever I could come up with as my worst pain.
I met a lady with RA who worked with me and I asked her what was wrong she described her pain to me, then I asked could the doctors do anything for her. She told me not really. this was in 1993. I was diagnosed in 1996. She has since passed away with complications from RA so the disease is real. I don't care what anyone says. Some will say it won't kill you and some doctors will say you can't be disabled by it. I sure was told those things. But oh yes you can. She was 65 when she passed away. This was in
These days rarely do people believe you when you tell them you are in pain. I have no idea why they think people would use this severe illness which changes your appearance and who you are so drastically as a way to get attention, or seek pain meds, or whatever reason they come up with.
I spent a great deal of time trying to convince people I was sick. I had a severely ill daughter I wanted them to help her so telling them about me I thought would get her the help I felt she needed. or supplement the help I was able to give her.. Now I no longer have my daughter. I could care less whether they believe me or not, as long as the doctors listen to me and try to make an effort to help me I am okay.
Just keep going to school, getting on with your life. You can choose to educate each and every person you meet if you want but there will always be those who just don't get it. Even medical personnel don't get it. They try to manipulate me in all kinds of positions in the hospital. I have to explain to them -- medical staff of all people that my RA body will not let me get into those positions without assistance. So if the professionals don't get it, can't really expect anyone else to. Thank God for support groups and those few who are on them who will also have it as similarly to you who will be able to relate to you and your day-to-day life.
I hope your doctor will be a good doc too and that she listens to you and doesn't stop searching for the right treatment for you until you both are happy. Hang in there. take care. let us know about your doctor and if you like her, take care.
LOL! GrammaKathy!why isn't she so concerned about fertility with acterma? You shouldn't get pregnant wihle on rituxan or orencia but you already are on MTX which is a known problem for a healthy pregnancy.