dear freinds,
it has been many years since i visited a message board...13 years since i was diagnosed (and what a scary time that is.)
so glad to find you all here.
thought i would seek some help from those who know....because i am totally losing it. i remember when i was first diagnosed and those first couple of years wondering how i would get through - my life as i knew it was over. there definately is life with ra, and a great life too...but some days - some weeks, i just cant hack it anymore. i'm right back at the beginning, not being able to accept. the mobility goes by degrees, the good days farther and farther between, a good night's sleep? what is that? hurts to lay down, hurts to get up - ok. sorry. i feel really bad. i don't want to tell my freinds and family one more time "oh, its nothin, just not feeling well today" or "i'm not going to make it after all, my body hurts" or whatever! and getting that response or that look like i am ALWAYS complaining or always sick or always tired! or that it is just some poor excuse for not wanting to participate. i do want to participate -i want to do alot of things that some days are absolutely impossible.
i really do feel bad, really bad today and yesterday and the day before that. - and i just wanted to hang that out there to someone who understands.
sorry to be so negative. i really am at my wits end today.
I know how you feel. There are many days I wish I could have just two good days in a row. I would give anything to wake up just one morning and not be stiff and sore. When I tell people, "No, I cant do that" they look at me like I am nuts. I cant keep up my house like I use to. I cant work anymore because there are more bad days than good. I know exactly how you feel Carmen! You are not alone.
You have to vent at times or you feel like you might go nuts. We are all here for you.
Lesle
WELCOME to AI...CARMEN
VENTING IS ALLOWED HERE and ENCOURAGED
Hello Carmen, Sometimes it is so hard to see the path because of the underbrush and that is the type of terrain that RA likes to keep us on. constantly on uneven ground. I often have to remind myself when I wake up and feel bad, that I have to take it easy today or that I may not be able to do what I had planned on. If someone makes a remark about my non ability to function well, I stiffen the old back up and tell everyone, that today is "not a good day" and I walk away from those who know what I am going through but refuse to understand. Then I make myself feel as comfortable as I can (turn the music up as loud as I can stand...drives the husband nutz...heehee)...even if that means not getting a darn thing done. I do not apologize to myself or anyone because I am having a very bad day and you should not feel as if you have too either. Form what I see, most of us who have a chronic or debilitating diseases, try to overcompensate for having it. It's not like we asked for this ... so why do we feel we have to suffer in silence? HOG WASH! The only thing we can do, is do the best we can and leave the excess baggage of shame, that seems to incorporate itself in RA, on the front doorstep. Do the best you can do Carmen and don't feel you are expected to do any more than that. I noticed that you are on Enbrel, did you try MTX with the Enbrel? I have read that sometimes to get better results from the Enbrel, they add the MTX to it and the combo of the 2 works better. I do hope that you have better days ahead of you and anytime you need a friend we are here for you...and we have LOTS OF EARS TO BEND on this board...
Toni you are both so kind. thank you. my flare is passing. i do see that shame involved, now that you mention it. shame that the disease is getting worse, that i have no control over it. and honestly, i have no room to complain. i'm one of the lucky ones - still have lots of mobility. i am going to see all my kind doctors - maybe its time for a change in the meds. mtx didnt agree with me, even the small dose gave me a hangover. do you have any experience with celebrex? been on this maybe three years. was taking diclofenac which was working fine, but the doc wanted to switch for the stomach sake. i am having quite a bit of anxiety - which could be from the disease escalating, but heard some peole experince that with the celebrex? any thoughts. thanks again. Welcome Carmen; I too know how you feel...been there many times over the last 12 years. I've been up and down and up again many times. Right now I'm on MTX & Humira and I'm having really good results with that combination. I take advil on a regular basis as needed...and the occational pain pill; Which actually has been more regular than usual lately due to some back pain. I've taken something to help me sleep for years....even when I feel well. Although I'm managing well, I still have a certain degree of expected pain. I really feel like I'm always going to have some. I've heard it said that once you already have some joint erosions the pain just comes with it, even if your inflamation is down. I've learned that if I sleep well I feel so much better the next day. It's so important for us to get proper rest. I see no harm in taking something to help you sleep...even for extended periods of time. You've been doing this for 13 years now...and I'm sure you've learned like I have that things will get good again; and you've probable also learned that things will also get worse again. It's a cycle we've just learned to live with and rarely does it surprise us...but it always disappoints us. You hang in there Carmen. Hope to see more of you here. Come visit us on a regular basis; it's good theropy
Again; Welcome. Lovie hmmm. prednisone. i've been on prednisone since day one, so 13 years. i generally take 5mg per day, unless i have a flare that just wont' stop. then i increase to 10 or 15 for 3 or 4 days and then taper back down. cant seem to quit it now. if i try to half it or quit it i always end up with a flare, even at that low dose. so i would say its addictive to the body, of course you notice the speedy feeling, like too much coffee (on the higher doses). i've heard horrible things about prednisone, but for me its a quality of life issue. i've been a single mom (of one) these last 13 years and have continued to work very part time. i figure i can get off the prednisone (or pay for the effects) in my twighlight years. so if you have to quit all your other meds and just take prednisone during pregnancy - what kind of dose is the doc suggesting? i'm sure there are many who have ra and have gone through pregnancy that can give you some good advice. i already had my little cherab when i got hit by the bus.
already this message board has helped me sooo much. i was beginning to really isolate and feel sorry for myself. boo hoo. does a body no good. Carmen....You probable notice in the sleep thread that I take different things at different times. Tylenol PM has always worked pretty good for me. I'll just take one several hours before I intend to go to sleep....it's not so strong that I feel groggy the next morning but it gives me the little extra I need to rest peacefully. I also take Tramadol and muscle relaxers here lately due to some back problems and I've noticed pain old OTC sleep aids work just as well. I haven't ever been prescribed anything just for sleep though...I might look into that. Hope you sleep sweet. ha ha. maybe so. of course they are getting kick backs on all those drugs. i do notice the predinose has changed my face, but weight is currently not a problem for me. - it's almost the opposite. starting about 3 years ago i started have intermmitent diarhea (sorry to be so blunt) and after many tests for ibs, crohns, drug reactions etc, just nothing. dont know what is causing it, but i avoid eating now, because I'd rather be hungry than in the bathroom every hour...maybe just food sensitivities, but of course no doctor mentioned that possiblity to me during all that expensive testing. allergy testing doesnt look very reliable anyway. just trying to figure it out for myself at this point. but yeah. would like to get off the pred. would like to get off of all of it. you know, you get those xrays and you have holes in your bones, like a light bright punch out.
I am new to this message board and when I talk about my RA with friends or family, I know unless they have RA as well, they will never understand what I go through. And I wouldn't wish RA on my worst enemy. I am sure you know what I mean.
Please hang in there, ok? I know exactly how you are feeling. When I have a really bad "flare up", I just want to die! It seems like dying would be easier during these times. But when the flare ups subside, I know I'll be ok. I try not to complain and just accept this is the reality of my life. But it feel really good to be able to talk on this message board to others who know what I am going through.
BTW, how long were you on prednisone? I am on it now and have been for 2 years. I want to have a child and my doctor says this is the only safe drug that I can be on while trying to conceive. What are you thoughts about prednisone?
Copyright ArthritisInsight.com