Hi everyone,
This is my first time on this forum. I was diagnosed with RA and Lupus about 14 years ago and am currently on Methotrexate, Plaquenil, Mobic, Losec and others to take care of the side effects. Also have underactive thyroid and have just come off prednisone after all this time. I have osteoarthritis in my right ankle which the doctors want to fuse, although I'm pretty hesitant on that one. I am finding the limitations quite frustrating especially not being able to walk very far or for very long. I am interested in hearing about other similar stories and being able to relate to others with similar problems. I find most people don't know how to relate to my stuff and tend to over-fuss and try to wrap me in cotton wool which is the total opposite of what I want from them. Good to read others stories - makes me know I'm not alone.
Kandy
Hi Kandy, nope you are not alone. Welcome aboard! There are lots of people here going through the same B.S. as you and me. I too suffer problems walking very far. I have RA bad in the feet and hands. I started on enbrel about 6 weeks ago and I can really tell the difference in my morning stiffness and the swelling has gone down. A little better with the pain. By evening I usually wear my self out just be trying to do every day things like dishes and laundry. I take many breaks and sit down for a few minutes and start again. My family has been very supportive. I have two teenagers 14 and soon to be 20 on the 27th. They sometimes need to be reminded to help out. My hubby usually does that because I just hate to ask repeatedly for help. I usually get ticked off and do it myself. LOL
So, hang in there, Kandy, and feel free to post/rant or whatever. You found a great website to do it!
take care
Just wanted to say welcome Kandy - they are a brilliant bunch of guys on this site with loads of experience and the kind of advice you don't get from the docs.
Take care
Dee and Becky
Hi CinDee,
Thanks for your reply. Yeah I can relate to what you are saying with housework, although I have two sons 18 & 21 and they don't really understand what it is like for me. I did try arava a few months ago and am still trying to get the stuff out of my system as I am allergic to it. The worse thing is that it really did work for me too. I find housework very difficult verging impossible so I get up, sit down, get up, sit down etc. I have double curvature of the spine which doesn't help with pain either. It's great that your family is supportive of you. Other then my sons, my partner has been alot better since he has been diagnosed with diabetes and all of a sudden thinks he knows how I feel...funny comparison but at least he's trying!! Will definately keep posting and look forward to hearing from you again.
Hi Dee & Becky,
Thanks for the welcome! I am already feeling very welcome. Great to hear from people that know what it's like. Should have joined earlier but better late than never.
Take care!
Kandy, there is a great story about "the spoon therapy" I can't remember what the website is. Might even be this one. Maybe one of the other members can help with this. It is something to print out and have your sons and partner read.
**JUMP IN GUYS and help me remember and tell Kandy about it!
take care
Well i just had an allergic reaction to the Arava a few weeks ago so we have something in common. Welcome to the board.thanks Milly,
we do have something in common. Such a shame isn't it. Arava is supposed to be very good. I was put back on methotrexate reduced dose as previously it had effected my liver on 20 mg so it has been halved. The other option was intravenous medication but I didn't want to go to that yet. What are your other options? Keep me posted and take care.
Well i see reumatologist next week but will keep you posted. When i have an answer for you.Hi Kandy, welcome to AI , sorry its through having RA though.There is a wealth of knowledge here and some random topics so everything is covered
Take care
Lisa
Kandy, I was telling you about the "spoon theory" go to butyoudon'tlooksick.com and it tells you about it. It's a good thing for friends/family to read to relate to how you feel.
take care and thx JunctionCity for the website info
About the fusing, i was told they might have to fuse my finger in the future if it still gets worse like it is (currently my worst spot).
I told him no lol.
It's the middle finger on the right hand. I can see me perminantly flipping people off all day lol.
Welcome to the board! I was dx'd with RA over 20 yrs ago - have had some bad times but am not suffering the same pain as I used to. Been on several different medications- for past few years have been on MTX and Celebrex + Placquenil, and folic acid to help with side effects of mtx which fortunately doesn't have too many side effects on me. This 'cocktail' seems to have worked ok. RA seems to have been inherited from dad's side of family, and I also have some OA thanks to mother's side! it is a shame u took so long to find us; read back in some of the archives and u will get some useful info.
Where abouts in Oz do u live? I am in Brisbane Q. and interested in linking up with any who are close by - and have met up with some in other States when on hols.
Lorraine
Hi CinDee,
Thanks so much for the address. I will certainly be looking this one up. I appreciate it
Hi Bubbagump
Thanks for your welcome. Sure would be something to have that finger fused hee!hee! I don't blame you for saying no though. It's so final!
Hi Lorraine,
Fancy that! i live in Brisbane too. I have been on methotrexate + plaquenil + mobic and folic acid for a while and just came off prednisone after 14 years. Previously I have tried the gold injections, imuran (that gave me skin cancers on face), arava and sulphasalazine (they think that induced the lupus). RA comes from both parents, although I have the type my Dad had. OA is from old injury and my Mum has that also. Thanks for your post. Didn't think anyone would be from Brisbane too! Great!
Hey CinDee,
I just read the spoon therapy - I have just seen myself! It is so amazing and I just kept nodding the whole time I was reading it. I will certainly be showing my partner and sons. It is just the best way to describe how it feels. I can't tell you how grateful I feel right now to have found this sight and to all of you who have helped me in such a short space of time. It feels really comforting! Take Care
Hey Kandy! Welcome. I don't post too often but i read multiple times a day. I sort of think others here have much more information and experience than I do but when I can help someone by telling of an experience similar to theirs, I jump in. First off, I was told by my RD in September that I am in a remission. That may have been true in September but man 0 man am I hurting now too. My next appt. in in 2 weeks. I am on Enbrel and Arava. I used to be able to walk 3-4 miles a day. Since it's been so cold here I haven't done it in about 2 months. Well yesterday the temps shot up to 70 so my friend and I decided to do our walk and I was limping and had tears in my eyes. After all that, I was wiped out so I made dinner (it was my son's birthday) and was in bed by 7:30. The exhaustion is killing me. Housework? Forget it. I arrange and rearrange the junk and then I lay on the couch.Hi Honey,
Thank you for your welcome. I don't know what I have done for so many years without this forum and I have only just found it! I was telling my partner earlier how good I am feeling in myself in the last few days. I can't wait to get home now to read more. It is a shame that you were in remission and now have more pain. I have had so many times when my pain does not match my blood results. My doctor now goes on my inflammation and pain. I think you should jump in more as it's not just about information. It is important to get info but just as important as being able to give and to get support. So keep posting too, I intend to. I so agree with the housework. I go round and round mine all the time. I forget what a tidy house looks like. Hope to catch up soon.
Hi Kandy and Welcome!
AF has the sppon theory that they keep as a constant thread they bump to the top. Maybe I'll go get it and bring it here. It's certainly helpful for what we have to deal with.
Hugs,
Pip
Just want to say Hi and welcome.Hi Pip and shykymom,
Thanks for the welcome.
Hi Kandy! Welcome...you'll find a lot of support and information here!Hi kandy...just wanted to welcome you to the board
Welcome to AI. This is a great place for support and information.
Wish I could have your Aussie weather. Where I am, it's minus 15 degrees celsius.
The "spoon theory" is awesome!! The first time I read it I cried. Then I contacted the author just to say thanks--I felt like she had gotten into my brain and explained things way better then I ever could. She actually emailed me back and said thank you to me!! I couldn't believe it--she was very gracious.
Hi Marcy,
yeah, it sure is. I feel as though I now understand more about how I feel, just reading that. I have Lupus also and thankfully it is remission. It was an excellent way to explain it to someone too.
Hi Kandy,
I am just saying hello to you and letting you know that we are glad you found us (sort of
Jay
Hi Jay,
It's funny that! It's like, do you say 'glad you are here because of what you have'. I don't see it that way though. I guess I know I have to live with this disease, better to live with it and enjoy others chats when you/they understand most of what you say,like being on the same page I guess. At least there is a way to cope with it by finding places like these - thanks so much for the welcome!
Kandy,Hi Marcy,
Yes, I am the same one. I found 4RATalk.com after I read it on this forum and joined there too.
Kandy,Hi Marcy,
Yes I really enjoy both sites too. Great information and support!