....In regards to the bickering (I guess you would call it) going on in some of the threads on this board, as a "newbie" here, I have to say that one aspect is bothering me....which is to think that someone might send post a nasty response or send me a nasty pm (which thankfully I have no idea how to check) if I am logged in at an hour that they deem as meaning I am not sick.
I am really new here and really new to RA and maybe most people with RA don't end up sleeping 4 or 5 hours a night or none, but that seems to be how it is affecting me...
And I don't even remember who it was now (but it was obviously when I was still bothering to read through the "fight threads") that posted something about the person who started the topic not being sick if they were not in bed early, or not still in bed late, or both, or something along those lines...I didn't pay that much attention...until I noticed that I found myself offended just by virtue of having "the same hours" as the person who got the condemning remark.
AND I am certainly sick. Sicker than I have ever been in my life. I am so sick, and in so much pain, that although I am always tired, I sleep very few hours now...between the prednisone, the pain pills, the anxiety and the pain - VERY FEW HOURS of SLEEP....
So, like the poster who got knocked for this I guess as well, I spend more time now on my computer than I ever have before too, especially now that I have been out of work on sick leave for 3 1/2 months, now that all my physical activities have been curtailed, now that my social life is down the drain, now that reading a book (the pain of holding it in my hands and needing to turn the pages has made a favorite pastime unbearable) etc.etc.
About the only thing I CAN DO THESE DAYS BEING THIS SICK is rest my 1,000 LB aching hands on a keyboard, and type with a few good fingers... making this computer and this forum (with it's hope of inspiration and guidance) about all I have, while being this sick anyway.... You can only watch so much TV and so many movies after all.........
So again from this newbie's point of view anyway, I have to say that the idea of myself (or anyone for that matter) being potentially "judged" for what hours I or they might keep, is a bit unnerving....
My 2 Cents
Melly
I agree with that Melly. If I'm on here at 4:00am you know i'm having a bad night. I can't tell you how many nights I've had to get up because if I layed in that bed one more second I thought I'd die!
Problems sleeping is often a problem for me due to pain. It always makes me feel better to be able to log on here at any hour of the day or night and there be someone else on here because of the time differences we all have.
It might be 4:00am here but somewhere else someone is up having their morning coffee.
I like that.
Melly,
I can't help you with the mean people, but welcome and I use this book holder because I can't hold books anymore either. I am enclosing the web site but you can also find them at Books a Million. Don't like the bookstore that much but was sure glad to find this book holder.
http://www.phiferreader.com/home.htm
This holder has enabled me to read in bed again which is something I love to do.
I hope things get better for you soon.
Crispy, What a neat item! I may get one, too.
I had the joint at base of my thumb (at wrist) replaced 4 weeks ago, and it looks like it would enable me to read again.
Thanks for sharing,
Nini
Melly,
I understand your concern. I too am on here late at night when I cannot sleep. I lay in the bed and get on the internet.
I do not think anyone would think badly of you for being on here at anytime of the night or day.
I hope you will stay and just read and reply to the positive posts.
Those long hours of non-sleep in the night pass much quicker when I get onto the net. Like a few others on here from Oz & NZ, I am in "Tomorrowland", so the early hours of the morning for us, mean there is quite a lot going on - on the forum - and in the rest of the world!
Crispy
Thanks so much for Phifer Reader Book Holder suggestion....Haven't been on here for awhile in hopes that whatever was going on on this board negativity-wise would cool down /blow over AND because I have actually been able to read again! It is really a miracle product, so thanks again! Of course I am way behind now on RA info and have to make decisions about medication changes tomorrow...Argh...It's always something!
Regards,
hi melly i understand what you mean about the bickering . i havent been here long but ended up joining some other arthritis forums where everyone is happy and helpful. after nearly dieing from an asthma attack 4 years ago i know how short life can be and now know that its too short to spend time bickering. i am in the process of trying to get on embrel at the moment . but as i have PA but no psoriasis its near impossible to get. but i have had to stop the arava due to a lung infection so i am between a rock and a hard place at the moment. well enough of my whingeing. all the best AllyGlad you have been able to use the book holder. It has helped me so much. I love to read in bed on my side and I think it is amazing how much this book holder can do. I think I will post the link in a new thread so others can see it.
xoxo
Melly, don't be bothered about the bickering. Those comments were made specifically to one person and not the whole group. I don't understand the aminosity there but I ignored it; it had nothing to do with my RA. I hope that you can ignore the posts that offend you because I can guarantee you that they won't go away. I try to ignore them.
I love the book holder. Depending on how my RA does after knee replacements I may order one. I'm hoping for no flares but one never knows. There have been times in the past where I've had to take a pain pill just so I could hold my book and read....that's pretty sad. but it's true. People that don't have these diseases will never know the agony that we go through just to be able to read. I hope you continue posting.
Melly, I also have PA and I didn't have any psoratic lesions ever, until just recently. I've developed one on my elbow and one on my leg. I don't understand why after all these years. My RA/PA is much better with my meds and I thought that I had lucked out and wouldn't get any lesions but they've popped up. My RD uses some type of laser therapy for them and once I have my knees replaced I'm going to have the laser therapy for the lesions. It's realy a shame that you can't get the proper treatment unless you develop lesions. Withholding treatment puts you at further risk and eventually will cost the health plan more money. I don't understand. Take care. Lindy
Sorry Melly, if you were offended. There was just a bunch of 'coincidences' all mashed together that got my anger going. Yes, I so know the '3 AM waiting until I can take the next pain pill scouring the net' with these diseases. It wasn't so much the early posting, it was the fact that apparently we have a 'troll'. Again, I'd never experienced that before and I, too, got sucked in.
Pip
LinB, Can you describe what these lesions look like? I have had some interesting things pop up on my skin that looked like boils with (sorry) pus in the center. They would get about an inch in diameter over 3 days then pop and go away and leave a red scar. Naturally, my RD has never seen one and I didn't take a photo. Next time I will. I have done research but cannot find anything that really looks like these things. Its just so weird.
Thanks
Crispy
Pip! I think she's talking about another incident that was going on lastLin -
Have you ever been tested for Lyme? Igenex is the definitive test. The CDC Blot et al tests are faulty and they agree so...
Pip
Pip, was tested a long time ago at Stanford but I've actually been thinking about getting tested again. I've read the research regarding testing methods. Once I get the knee replaced I think I'll get tested again just to make sure. All of our symptoms mimic symptoms of other diseases and they overlap. It's hard to keep from getting caught up in the symptom merry go round. It's on my plate to do. Thanks for the reminder. LindyThanks LinB, Your desciption does not sound like the boil type things I had. I am just going to hope they don't come back.
I have had the lesions you describe in the past, but none for a while.
Thanks for responding.
All:
I've felt a lot of relief already in just getting back here last night and reading some more, so I have definitely come to believe that the good I've experienced in my short time around here has far outweighed any possible bad. And it wasn't anything I personally experienced anyway - just was a ittle offput with what seemed to be going on in general. But the "good" here is really overwhelming actually...and I have taken the opportunity to look at other sites now, but this one just seems to house the most informed, intellectual and compassionate posters. Maybe it is just all that "passion" that leads to some conflicts or something too sometimes? In any event, the caring advice, feedback and suggestions people have given me here, from diet tips to electric blankets to bookholders etc has been absolutely invaluable! And maybe just maybe I need a little thicker skin anyway
Regards,
Melly
Lin B and Melly, i too have PA with only minimal psoriasis, and that is in my toush crack(sorry) and i rarely get it. It is the arthritis part that is debilitating me. the reason i was diagnosed was because my brother has pA. I started mtx. a few months ago, recently increased it. and now waiting for ins. to ok enbril so i can get off pred. The problem i am having now is shortness of breath dont know if it is from mtx. or smoking? it is like i cant get enough oxygen into my lungs. maybe i have develpoed asthma? sorry for rambling, but nice to see others with the same form of arthritis
kel
Kel, If you've delevloped SOB just recently and not had a history of it, then you need to call your primary doc or RD. When was your last chest xray? It can come from the MTX. There can be lung complications from taking MXT. It's something that I'm watched for carefully because I have lung complications from RA and am taking MXT. I actually have had more problems from the PA than the RA. The RA has been controlled with meds but the PA is still somewhat active. Don't mess around with shortness of breath, call your docs. I don't need to tell you what to do with those smokes - you know! And I promise not to preach. Keep is posted. Lindyi have PA also and only a small patch of psoriasis on my elbow and knee . I am a severe asthmatic . and like lindy said dont mess around with your lungs . i had the flu about 3 times running , just start to get over it then it would be back again . i was also stubborn and a heavy smoker . well i was so bad that i could not walk from my kitchen to the front door without being puffed out . but i still kept smoking . 10 days later i woke from being in an induced coma . my life hasnt been the same since ( that was nearly 5 years ago ) i had to learn to walk again . and couldnt do anything for myself for 3 mths . not even wipe my own behind. I now have PA brought on by the trauma . i havent touched a cigarette since . and i love to breathe now . so please be careful it can happen so quick and others dont get a second chance like i did.