Not sure | Arthritis Information

For a while now I have been in bed a lot because of the RA . With know meds except for pain medication. I have had my first dose of Remicade it seemed to help as much as one dose could. I can't figure out if I am so tired now because , of everything I have went through the last six weeks waiting for some sort of relief. Now it's though my body is just tired. I am still staying in bed till almost noon have know energy. I can't tell if I am depressed or just tired from know sleep or being in constant pain. My house needs a good cleaning and I just have know desire. This sounds bad but I don't care if I look like SH-t. My daughter has tournament this week end and I may have to drive God know I don't want to go or for that matter feel like it. Tell me will these feelings go away!!!!!

I wish I could give you a big hug! I am glad you will have somewhere to go and something to focus on, other than being in bed and pain--I hope the trip goes as well as possible. Do you have a therapist or in-person support group you could meet with? thanks Katie you know it proably would help to get some therapy. This is so hard to deal with. I did go once ,but he said that he thought maybe I liked being a victim. I would like to believe that is not true at this time maybe he was right.hi nut sorry to read you are in so much pain. the pain will sure bring you down.
are you saying they gave no meds before remicade. not even pred dosepack

All these things take time, months, even years.
Sorry if that scares you, but that is my personal experience.

Don't feel guilty about the time in the cot, this will become less and less when the drugs start working.
I had been on MTX. and Enbrel with know success so I had to go off of them for 6 weeks before the Remicade. Even at that I really wasn't on them very long. MTX. gave me bad sores and nose bleeds. And with out MTX. the Enbrel wasn't doing anything. The insurance company and Dr. went round and round before they could decide what was good for them for me to start on. Bodak it really is scary to here where what could be in store for me. It's weird I will give my self a pep! talk and will be ok for a while. This not getting out of bed thing is not who I was. Mentally and physically I feel broke. You know though like I said its weird the next post I will be cracking jokes is this normal ??? I really don't want to be (doom and gloom) I am confusing my self go figure..........Crappy old RA! It makes you go up and down and round and round.

Hang on! We're here for you- let it all out!

Hope you are feeling better soon Sweetie. HI apeanut, this is so normal for chronic illness, please don't beat yourself up about it. It is very hard, just talk to someone close that you can trust and definitely try and get a counsellor, this disease takes so much from us, we are entitled to get down about it from time to time, just realise that after the bad days come the good. Joking one minute, crying the next, we have all been there so get comfort from knowing it is normal for us. Concentrate on the good things you achieve, despite your illness and pat yourself on the back, hugs Janie. [QUOTE=apeanut] I can't tell if I am depressed or just tired from know sleep or being in constant pain. [/QUOTE]

Or all three together! This stuff gangs up on us, for sure. I see a therapist every other week and I find it very helpful. There's a great book I'd recommend too: Kitchen Table Wisdom by Rachel Naomi Remen. Each "story" is only a few pages long, so you can read one a day without the brain getting too foggy. The author is a doctor, therapist, and chronic illness sufferer (Crohn's disease).

Instead of worrying about cleaning your whole house, why don't you just give yourself one small goal for tomorrow, and then another for the day after, and see how it goes from there? Small steps.

Also I take SAM-e supplements which are supposed to help with depression, joint pain and liver toxicity (which all go along with RA and its meds!). The only caution is there was one study which indicated it might interefere with mtx, but if you're not on mtx, then maybe you'd like to try it. I found it gave me more energy and did help some with the mood problems. Downside is that it can be expensive.

Hang in there and let us know how you're doing!

InnerGlow2008-05-14 19:27:42Glow , Maybe that's what I need , a book to relate to .It might keep my mind from wondering on every little thing I need to do. That sound's like good advice. I appreciate all your kind word's. I see my self joking one min. and the next I am so over whelmed with yard , house hold chores ,being mom, grandma ect...... How have you all managed for so long ? You talk about survivor mode...

Janie,Lovie ,Free...... That almost sounds like a Rock group Thax guys for your wisdom.......NutHi Nut, I know just how you feel. I used to be such a neat freak but now I know I can't do it and at first it drove me crazy. I realized I had to let somethings go because I can't do it like I used to. It's been hard but I am less stressed since I have stopped obsessing over my house being not so clean. I am on anxiety meds and that helps me from losing it. I have always been an energetic upbeat person but since ra, things have really changed. It's hard to get used to and my hubby and kids have been great helping around the house. I still sleep 10 hours a night and sometimes take a half hour nap about 5pm. I have pain meds that help me alot. Aren't you on pain meds? Maybe that's something you can get to help when needed? I never was one for taking pills but it really helps and I only take them when I need them.

I wish you the best, and hope you can get it all sorted out.

take care

Honestly I have managed because:

I don't have children to take care of (neither of my stepchildren live with us)
My husband takes care of the shopping, cooking and cleaning (thankfully he enjoys it)

I had to stop working and go out on disability in November (which has been hard to accept)
I have good doctors and a good therapist (who sadly is going through her own health problems right now)

I say this not to say how easy I have it, but because I know what it's like to wonder how everyone else does it and feel like I'm not measuring up. You have a lot to handle, so give yourself credit for doing as well as you have. You're still here, you're still trying, and tomorrow is another day.

What I really like about the book is that it isn't one of those "I had to overcome all these obstacles and look how much I've accomplished" inspirational-type stories that can end up making us feel inadequate sometimes, but more like little reminders of what's important. I used to read one story each day, and then spend some time meditating on it. The book is spiritual without being overtly religious. There's also a second book called "My Grandfather's Blessings" that's just as good. Here's her website: http://www.rachelremen.com/

I am on pain meds, Vicodin and percoet. I tried the pain match ,but know one told me it had a morphine base and I broke out with terrible itching. Thats my biggest thing is letting go of the control. Even when I worked i was a control freak. God love my fam. but they have know idea where the trash can is. My husband is very good at the shopping ,but lacks in original thinking as well as my daughter. I am not putting them down they are who they are. It's just it would be nice for someone to clean the bathroom or sweep with out asking. You know you feel like a big loser any way because your home and your not doing it(guilt) so you feel like why should they be responsible. I am telling you that I think I just had an awakening I feel guilty for getting sick....Wow Know wonder I am having a terrible time getting through the mental issues. I wonder if they think I am a burden to there life that is deep....nut

Oh wow peanut I had those feelings when I was feeling my worst too. I feel anxious if I'm not in control. I too felt like a burden. No one did anything without me asking either and it was so obvious that things had to be done both for both me and the house. Then I got resentful. Then although I kept my mouth shut - when people did things they didn't "do them the right way". Then I felt guilty for feeling like that. What a rollercoaster of emotions this RA causes.

Here's to a ride "up" for awhile!

OMG!!!!!! Reading that is like taking a page out of my own twisted thoughts. I wonder if this disease attacks more often people who are likely to want to be in control. It's as though if I do get help I feel that they do it in a way that is half ass(sorry) so that they will not be asked to do it again. My husband is good in so many ways . good father , grand father ,good provider. Other times I feel as though there is another child in the house. Then the guilt comes for having all those feelings. And then there is the conflicting statement am I the burden.......... Weird Huh NutI remember a thread once- I don't know if it was here or elsewhere but each person gave a brief rundown of their onset. Almost every woman made mention of how they had been a "superwoman", always in control prior and how this disease had humbled them. I too wondered at that time if there was a personality link. Yeah, I'm a control freak, to put it mildly. And before I got sick (fibro before RA), I was one of the busiest people around.

For people like us, it is difficult to accept help, and even more difficult to ask for it. And worst of all, when we get it, we want it to be as good as if we did it ourselves. It's something I work on every day.