my hands have become so deformed in only 2 yrs since diagnosis. you can tell me if this is 2 depressing for board but i really would like to know how aggressive mt ra is relative to other people with this disease
1 thumb has almost become unusable. it has 5 "bends" that I have been told is permanent without surgery. Both little fingers are severely deformed, the other thumb is not in great shape and my wrists are turning permanently crooked.
Anyone else experience such a rapid progression of deformities? My toes are a mess. I would post pics but I don't want to scare newbies. I don't think this happens to most people with RA. So any input as to others experience is appreciated. At this rate, I am scared my hands will be totally unusable within a year. Then what happens to me?
So sorry for you!!! It does scare me to know what my hands could end up being like. I'm praying mine was caught early enough to prevent anymore damage. Mine are nothing compared to yours. My pinky fingers curve in towards my ring finger and my pointer fingers curve in towards my middle fingers. My wrists don't look nearly as bad as they feel, except that I have a ganglian cyst on my left writst, so it looks a bit odd. I've had wrist pain since I was in junior high, so you'd think I'd be used to it....not.
I wouldn't mind seeing pics though....not sure about others.
Its hard to tell if my hands look so messed up from actual deformities or ifs its soft tissue swelling. My pinkies have a definite curve to them though.You can see changes (Or so my dr. says;) on X-rays.....but to the naked eye it's likely you wouldn't even know anythings wrong with my hands. I notice some change.....but no one else would.
Post pictures Roxy.
Post pic Roxy.I have major deformaties in my fingers and wrists, It would be interesting to compare.Mine have only happened in the last three years.My right hand especially, is looking worse. My last 3 fingers are drifting to the right, which I've only noticed recently. And knuckles on both hands are very large and swollen. Nothing like you described though. It sounds like a very rapid progression. I thought all these drugs we're taking were supposed to stop the progression!!??My pinky on my left hand is starting to get a bigger bump on the inside of the knuckle. It is irritating to me as it bangs up on my wedding ring on the finger next to it now. I've only noticed this within the last three weeks. I've been taking my relafen hoping it would bring down the swelling - if it was swelling - but it didn't do anything. Dr. told me to take the relafen only as needed. I'm not in pain in that finger.It has definatley slowed it in my case.
Everyone that's early in the disease; take pictures of your hands and feet so you can compare them years later. I wish I had some to compare to now.
Lovie that's a great idea for us all - to take pictures to compare if we suspect changes later on.Oh hun, I'm so sorry you are experiencing such a rapid progression. It sounds like you need a change or increase in your meds? What does your Rheumy say about this? Maybe it's time for a second opinion... My fingers are starting to turn a bit in all different directions, but my rheumy doesnt seem concerned just yet. I think my next appt, I will ask for x-rays since it has been a while. I've had two surgeries on one of my thumbs and it was the best thing I could have done. If that is an option for you and the Dr is recommending it, I think I would do it.My rheumy says" I am sorry, You are one of the unlucky ones - all we can do now is to try to slow progression. Nothing has worked yet.
I cannot take pics of my own hands, much less hold anything with any weight, like a dinner plate or full glass of liquid. I will ask my angel, Angie, (my caretaker) to take pics tomorrow.
It is kind of scary as I told both my caretaker and husband I would rather be dead than in a nursing home. They both have said they would help me if it came to that
I really want newbies to know that I have been told since diagnosis that my RA is severe and I have been med resistant. You do not have to end up like me.
Have you ever seen those old women that weave baskets? I don't know where I've been that I've seen these little old ladies weaving baskets. Their hands are really, really deforemed; but they have learned to work with them anyway. It's amazing what they can do. My Grandmother's hands were horrble! You couldn't read a word she would write; but she made the most beautifu quilts you have ever seen.
I think as your hands become deformed; you learn to manage the changes. I'm just guessing....but I'm hoping I'm right.
Roxy, it's so hard when your hands don't work like you want them too. My left hand is bad even after the surgery. Can't grip very well, no heavy lifting, and forget anything the requires a twisting motion. I slide my heavy plates on to the table from a tray on my walker. I use both hands when lifting heavy objects such as a pan of water. I've learn to use my palms to lift things to my mouth. Use my elbow to squeese the toothpaste on to the brush.
Basically, I try to see if I can to things in another way. After watching this girl, with no fingers, drink a iced drink using her forearm and upper arm to support the cup, I knew that I could learn how to redo things. Yes, i made a mess sometimes but when I finally got the hang of it, I had this smile that was from ear to ear.
I know what you mean Marisa. There is this little girl that plays sports against my daughter in basketball and softball. She was born with only one hand. It's amazing to watch her play softball better than some of the ones with two hands. Fastpitch softball at that!Anyone experiencing hand deformities should get to a hand therapist to learn how to protect them and have splints made. Using splints designed for your hands and the tasks that your perform can make a huge difference in the speed the hands disingrate.Yes, once you've lived with hand deformities for a while, you learn how to adapt and use what you have. It's a bit frustrating sometimes that you can't get your hands to do what you want but you forget about it and move on. Despite the ugly looks, my hands are very usable and remarkably, pain-free!
I use my hands irregardless of pain. I've learned to make jewelry and silver smith by adapting the techniques. I paint but I paint on a larger canvas and not with the detail that I once did. I've completely changed my style. We don't have to give it all up but we do have to learn new techniques and try and adapt. I only learned that by practice and patience.
The RA and PA are progressing despite all of the wonderful little cocktails that I've been given. With Remicade and MXT it seems to have slowed down but I don't think remission is in the cards for me. I started treatment too late in the game.
Binge, My hands are not half as bad. How long did it take for them to get that bad? I will post pics of mine and maybe you can tell me what YOU think. You definitely are an expert. I am so sorry what this disease has dealt you.
Who can I email pics to - I cannot seem to post them.
bingethinker, you are an inspiration to me! And LinB, you keep on doing what you want to do in spite of pain! Thank you both for sharing. It's so amazing to me, the strength we have inside ourselves, if we only just realize it!Roxy; download them to photobucket.com. It's so easy to post them here once you've downloaded your pictures there.http://s206.photobucket.com/albums/bb224/roxyloveskelsey/
Does this work?
it worked...have you ever been to a hand therapist.Binge, may I ask your age? And Roxy, your age. How long has it been since diagnosis?Wow, Binge, I admire your attitude so much. You're always so positive, and never really complain. We should all follow your lead. I know you say your hands don't hurt much, but it MUST have hurt a lot at some point.
Thank you for our serving of humble pie.
[QUOTE=roxy]my hands have become so deformed in only 2 yrs since diagnosis. you can tell me if this is 2 depressing for board but i really would like to know how aggressive mt ra is relative to other people with this disease
1 thumb has almost become unusable. it has 5 "bends" that I have been told is permanent without surgery. Both little fingers are severely deformed, the other thumb is not in great shape and my wrists are turning permanently crooked.
Anyone else experience such a rapid progression of deformities? My toes are a mess. I would post pics but I don't want to scare newbies. I don't think this happens to most people with RA. So any input as to others experience is appreciated. At this rate, I am scared my hands will be totally unusable within a year. Then what happens to me?
[/QUOTE]Roxy, it's so hard when your hands don't work like you want them too. My left hand is bad even after the surgery. Can't grip very well, no heavy lifting, and forget anything the requires a twisting motion. I slide my heavy plates on to the table from a tray on my walker. I use both hands when lifting heavy objects such as a pan of water. I've learn to use my palms to lift things to my mouth. Use my elbow to squeese the toothpaste on to the brush.
Basically, I try to see if I can to things in another way. After watching this girl, with no fingers, drink a iced drink using her forearm and upper arm to support the cup, I knew that I could learn how to redo things. Yes, i made a mess sometimes but when I finally got the hang of it, I had this smile that was from ear to ear.
[/QUOTE]Binge, My hands are not half as bad. How long did it take for them to get that bad? I will post pics of mine and maybe you can tell me what YOU think. You definitely are an expert. I am so sorry what this disease has dealt you.
Who can I email pics to - I cannot seem to post them.
[/QUOTE]Blessed- I posted a link on this thread with those pics. The thing is - they are not swollen. That is them at their best. The deformities have made many things impossible and painful. I cannot slice meat, pound a hammer, anything like that.
Binge - Were your hands more painful at the stage I am in??? They really are painful.
As far as why me. I wish I knew why. My RA onset was severe and I was hospitalized. From then on I have been fighting it. I can't take Arava or MTX. I do take relafin, pred and humira..
Cassandra - I pray you are right but my doctors say it will not change as it is permanent damage without surgery. My xrays look worse.
So far Enbrel did not work and I am not impressed with Humira. I don't know what to do - right now I am working on other symptoms. Neurological. It never ends.
The last few weeks I have had the toughest time with my hands. Cannot hold things - drop things. I think this may pass as it is pretty much guaranteed that the pain decides to go somewhere else
Buckeye - What could a hand therapist do??? I have never been to one but I am sure open to suggestions.
my hands have become so deformed in only 2 yrs since diagnosis. you can tell me if this is 2 depressing for board but i really would like to know how aggressive mt ra is relative to other people with this disease
1 thumb has almost become unusable. it has 5 "bends" that I have been told is permanent without surgery. Both little fingers are severely deformed, the other thumb is not in great shape and my wrists are turning permanently crooked.
Anyone else experience such a rapid progression of deformities? My toes are a mess. I would post pics but I don't want to scare newbies. I don't think this happens to most people with RA. So any input as to others experience is appreciated. At this rate, I am scared my hands will be totally unusable within a year. Then what happens to me?
[/QUOTE]Binge..you are an example to us all. You keep right on going and going going...and don't let anything stop you!
I have a small amount of deformity in 3 fingers. they just kinda curve a little. I don't notice that they are more painful than anything else going on.
I feel that people can adapt to any physical deformity or abnormality. We talk of positive attitude a lot around here and this is one situation where it can be a cure.
My aunts hands are similar to Binges and she also manages very well ( she even knits). I admire you Binge for your positive outlook, what an inspiration
I do water therapy for my hands to try and keep them straight. It is getting harder to keep them to a flat palm , it is helping with the pain though.
Roxy: My hands were very painful early on but they really seemed to be overshadowed by the pain in my hips and knees. I suppose I could say that up until I started the remicade 5 yrs. ago, I could go anywhere from moderate to severe pain at any given time in my hands. So yes, for 15 or the 20 yrs. I've had RA, these hands were painful.
As far as a timeable, my joint destruction progressed rapidly. Not only was I having joint replacements 6 yrs. after dx, but my hands also had become badly misshapen in that time frame. I remember because I had a hard time grasping things with my hands. My wife and I still have a running joke that anything I pick up with my hands has to hit the floor at least once before I can use it!
Thank you everyone for your kind words and I really do want to get across that you can have RA and live a somewhat normal life. Your normalcy changes from time to time, but you adjust and go forward. I've been through many different phases of this disease, many different "coctails" trying to control this disease and many surgeries to correct the destruction that RA has caused. But by no means am I an "expert" at RA. I'm learning every day. Even though I'm probably on the "other side" of what most of you guys are experiencing right now, I'm still learning from reading your posts. So, Thank You!
Roxy,
A Certified Hand Therapist can how you techiniques to maximize your range of motion, show you joint saving motions, perform hand massages, stretches, ultrasound and other pain relieving functions. In addition, and this is important, they can build you custom made splints. Splints can perform many functions. They can allow you to rest the hand in its best postion without causing any more deformities, it can add support during use. They can be built to help stretch contracted tendons. Of course they deal with the wrists as well. If you have any sort of deformity then splints you buy at the drug store, or even a medical supply store, will not fit correctly. Custom splints are covered by insurance. I truly believe you, and nay of us with on going hand issues, could benefit from a visit to one. Some of those deformities may still be fixable without surgical intervention.
"and I really do want to get across that you can have RA and live a somewhat normal life. Your normalcy changes from time to time, but you adjust and go forward. "
AMEN!!!! Your story sounds similar to mine except for the fact I haven't found my right treatment yet...but I will!!!
Perhaps the people that have no pain in their hands have OA in theirBelieve it or not but end stage RA can be much less painful than earlier stages. There is no more synovial lining to become inflammed, the joints have often fused, the tendons are lax so rubbing is minimized. Deformities may not hurt nearly as much as on going inflammtion.
You never want to expereince end stage if you can avoid though it since you can not ever recover the function you lose at this point and while the pain levels have improved there are other difficulties that can be far more challenging than pain.
Wow, thats about all I can muster in response to those pictures. My hands hurt like the dickens but I am not sure I have a right to complain after seeing those pictures. I do have some x-ray changes but nothing like that. I guess I would still be considered in the early stages as my rheumy talks about the synovial fluid and swelling. I am glad to hear that they are not as painful as they look but I can only imagine the pain you suffered getting there. Love and hugsWOW!!
Thought I was looking at pictures of my hands!!
Leanna
[QUOTE=bingethinker]
Thank you everyone for your kind words and I really do want to get across that you can have RA and live a somewhat normal life. Your normalcy changes from time to time, but you adjust and go forward.
[/QUOTE]
That is what I am going thru right now. I am having to adjust to my hands and some new pains and it taking a toll on me. I get frustrated when I go to pick something up and I cannot because of my hands. I just have to adapt to my new pain and problems and move on. That is what I have been doing all of my life.
I know I should not just live with it, but ya know... that is what I am use to doing. I am working on getting courage to change RD's and maybe be told about MANY, MANY more problems I have that I do not really care to address for fear of being told I am even more disabled that I want to be at this point in my life. But I guess... I am not that young... going to be 28 soon, and that is not young like teens and twenties.
Oh and Binge! Thank you for being you. I really have missed ya the last year or so you were away.
Joonie, Lee anne, Anyone else that is willing - Please post pics of your hands. I am curious. My hands looked so bad to me until I saw Binge pics.
I would like to know if my hands are severe for two years or not? I would sure like the progression to slow down. At this rate.........
Binge, my hips were the worse for a long long time. Now it seems my hands and ankles are the focus of the ra monster. I wear braces on both and I am getting knee braces. I hope I will "adjust" as right now I feel so dependent on others
Last night I was cutting a steak. It hurt so bad to cut it up that by the time I was done, I could not eat. I was in too much pain. I cannot open lids. My aid has to take my meds out and they are not in childproof bottles. sometimes it is very frustrating and scary when I am home alone. I have trouble holding the telephone.
Buckeye - a hand therapist sounds like a good recommendation. Right now I have appts. with an ear specialist and neurologist to figure out why I am getting migraines and hearing "chains" in my head. I get overwhelmed with all the appts. I wonder where you find a "hand therapist"? My rd and gp have not been too helpful. They are like "yep, ra does damage if it is not under control and that is it
Honey - I am 51. Diagnosed at 49.
http://www.htcc.org/locate/locatec.cfm
here is a link to give you a start. Any deformity is not good and losing function is compounding the issue. In 2 years any damage is a sign that your disease is severe and not being treated adequately. The responses from your doctors is totally underwhelming. They need to involve specialists who can help prevent or improve the problems the out of control disease is causing and that is physical therepy, occupational/hand therapy and yes even surgical intervention if necessary.
What you need to find out now is what in the hands is fixable. Splinting is a good start for you but if the splints are not fitted correctly they will not work correctly. They may relieve the pain but your hands are not being supported in the right positions, your fingers are not being stretched. Working with therapists and proper splinting , and surgery, have kept my hands relatively undeformed for over 20 years with severe RA. You can see horrible damage on x'ray but the soft tissue is intact, one of the thigns proper splinting protects.
I do understand about being overwhelmed with appointments, its also easy to forget about other joints when one or two are being particularly active but we got to do what we got to do to stay functional. Sometimes we get so focused on pain relief that we forget the real enemy is the inflammtion. Obviously you are not on an aggressive enough treatment for your disease level. Do you only take the humira every 2 weeks, have you discussed doing it weekly? You may have already gone through this but is there a reason your only disease modifying medication is humira?
Binge,
Wow, your poor hands!! I am so sorry.
My left thumb is growing into my palm (called Swan Neck or 'thumb in palm'..duhh) and knuckles on both hands are big but nothing like yours! The thumb will have to be surgically corrected or become useless, they have told me.
Not much pain, plus I REFUSE to stop my quilting!!
Good luck. Maybe more aggressive drugs is the answer?
Buckeye, I am on relafin and prednisone besides Humira. My rd won't increase my Humira until she says it gets a chance to start working. I have had four injections, 8 weeks. Yesterday I had an injection and I do feel better today. I actually got some housework done and planted a few plants that were dying in their pots. This whole week I have barely been able to dress myself or walk. Tomorrow I am going to family's for Mother's Day celebration. I could not tell them until today if I would be able to go. Last week was a really really tough one. Thanks for all your feedback and I will ask about hand therapist. I am concerned about taking more Humira as I have gotten sick every time I have taken it. My fibro has been the worse lately. Lots of muscle pain and flu like symptoms. My only RA symptoms show up a few days before my Humira injection. My hands seem to be always bad, at least the last few weeks. UGH This disease is so hard to deal with. Thank God I have an angel for an aide who helps me get out of bed every day.
I am so torn. Hand therapy sounds good but more drugs - God I hate them. Every time they add a new one, I get side effects.
Thanks for all the good advice. Roxanne
I hear ya about side effects Roxy, but seeing deformities like that is such a short time I would be leaning heavily towards adding in another disease modifiier at least until your disease is under control a bit better.
Buckeye, I am calling my doctor today and asking to try low dose mtx. I cannot use a knife and fork and my hands are more painful every day. I am also calling physical therapist and asking for a hand specialist. This has been a tough week RA wise. Wake up call !Roxy I wonder if maybe you could try another DMARD like Plaquinel or Sulfersalizine. I know you didn't have a very good reaction to MTX when you tired it before and Lord knows you don't need another thing to have to deal with.
I honestly don't feel like you are properly medicated. I've never in all my 13 years been as bad off as you are and I was on more than twice the amount of medication to alter the affects of RA than you have been on. I was to a point where I managed very well.....and even now despite some problems now that I've been off Humira I'm fairing pretty well.
Relafin and Predisone does nothing to help you in the long term. They are temporary fixes.
Good for you calling your Doctor Roxy. I do agree with Roxy that the answer may not be MTX. one of those 2 or even Arava might be a better choice for youLovie, I did not mind plaquenil, it gave me diarrhea but that is not even close to as bad as the extreme illness I got from mtx. My rd won't prescribe either until next check up. I am going to ear doctor today. I still, not always, but sometimes wake up hearing chains in my head. The lousy gp that will only see me 15 min. at a time and will not even listen to me - had the nerve when I told her about the chains in my head to say "we can send you to a psychiatrist". The bitch does not even know me. One thing I am not is crazy. I am wondering if it is an inner ear problem or neurological. Seeing both. I have not gotten to make an appt. with hand specialist yet. Just been taking it easy. My hands are better today so I am coping better. Right now I am looking forward to seeing Brett in two weeks. He has the property rented again and did a lot of work there. He has not drank in 5.5 months and does not take drugs now that he has been away from mine. We are trying to come up with a plan that my aid keeps my drugs and only gives me what I need. It is so hard for an addict to live around someone taking narcotics. Kelsey is not stable and I worry about the dynamics between those two. I miss Brett. He tries so hard - he sure amazes me that he keeps trying when you look at how much he has to take on being married to me. He really does love me. I am going to save all my energy (ALL my energy, as if I have much lol ) for giving that love back. I am so lucky I can do that as my aid does so much for me. Thank God my hands are a bit better, I am not looking forward to him seeing me not be able to use a fork!!!! I am going to see a hand specialist but one thing at a time. I only get on the computer every few days to answer emails. Typing is still difficult and I am actually reading a book. First one I might get through since RA.Roxy,
Save the drama for PM's or some other board....no one wants to hear about you and Brett.
And....I think your GP is right on the money
Phats
Don't want to be as blunt as Phats, but Roxy, haven't you been down this road before?
Remember the definition of insanity?
[QUOTE=Phatgirl2]Roxy,
Save the drama for PM's or some other board....no one wants to hear about you and Brett.
And....I think your GP is right on the money
Phats
[/QUOTE]
You don't speak for everyone on this board. If you don't like it, then don't read it.
Red headed
I speak for enough people and I can say whatever I choose. If you don't like what I write, don't read it@!
Whatever...
Well, you don't speak for me. And you're just a nasty person every time I see your posts.
You have some nerve, I just looked at all your past posts. Talk about being a BITCH. You had the nerve to say the person accusing a brother of rape that maybe she just "wanted to try out the brother". Then had the afterthought to say "Oh, that was insensitive".
You don't know anything about me. Look up my past posts. I don't have anything negative to say except this one topic. So, get your facts straight before you open your mouth, k? Oh, and Koko, but that goes without saying.
Maybe ... Phatgirl gave good advice for Roxy. I mean Roxy did get attacked the last time she posted about her life on here and she did not want another repeat for Roxy or the board.
Hope ya'll work it out.
OH NO NOT AGAIN PUT A SOCK IN IT....TERESAWho is this teresa person you speak of?
That is merry's real name, phatgirl.
Oh, duh. I thought I heard someone else saying oh no, not teresa again on other threads. I could have sworn they were referring to this "person" as the pot stirrer. Heck, I don't know. Forget my above post. I had a "moment"
Thanks for the clarity.
And just for the record, I tried to not get involved with this post, but Dang it, I just couldn't help myself. I get sick of hearing about the same old bs all the time. In a couple of months, she will be on here talking about how abusive he is and how she is kicking him out and he is never coming back. WTF???? Haven't we been DOWN this road OVER AND OVER AND OVER. Some of us don't give a crap. Go to your counselor if you need to talk about your marital problems.
As far as the mtx goes...did you inject it or do the pills? Sometimes if you inject...the stomach side effects and some of the other side effects people can get on the pills can either go away or be much more mild and more easily tolerated.
I know for me, I had to face the fact that I may never again be pain free. Some days it may be a 2 or 3 and I am ecstatic with that. I also had to face the fact that my "normal" has changed and can change again. It wasn't easy for me to do and fortunately I had some great support while I was going through that.
My hands hurt. Bottom line. But when I see posts like Binge's I can't help but to think positively...even thru the pain. If I lose hope...I don't know what I would do. Probably have to be in a nice locked psych unit somewhere. And I have to be a positive role model for my daughter who was just diagnosed at 12 years old with JRA. I feel that I have to teach her even tho she is in pain, there is light at the end of the tunnel and we will fight together to make it better for her.
It is really sad. This board USED to feel like family. Talk about kicking a person when they are down. There are some cruel sick people on this board. It is nothing like it used to be. YOU need to get a life and quit taking your bitterness out on people who are reaching out for support. Phatgirl - You don't like me posting about my life? I think you do - you are so full of venom you need any excuse to spat it out. I won't censor how I am feeling or what is on my mind. This is why Deanna is not visiting here also - no trust. AI is ruined by just a few. How sad. Joonie - You have your nerve. I invited you back here even though you have gone on vendettas against me with your friends multiple times. I just felt sorry for you. This place is no place for people with compassion. PS I went to a specialist and he said that my gp should not be practicing insinuating I need a psychiatrist. I have a pinched nerve between my C4 and C5 vertebrae from fall. That is why I am hearing "chains" in my head. The nerve that is damaged connects to my inner ear.Share what you want, just know that you are faced with criticism, just as I am when you post.
Believe me, there are plenty more who don't want to hear about your personal life but don't want to be public about their feelings. That is fine too. I'm a big girl and can take the hits.
Phats
As for the "envy" we should have, ummmm, I think NOT.
You severely lack in self esteem. RA is bad, but it isn't a death sentence. I think half of your problem is mental. You don't think you are worthy of anyone else, and who knows, maybe you aren't.
Hey Roxy. I was not being mean or anything. I was just pointing out that Phatgirl had a point -- which was people were attacking you for posting about your life a little too much. PLUS, I was also trying to defuse an argument before it got to far out of hand.
But hey if you feel I was being mean again, that is up to you, but I was not I was just pointing something out and trying to "protect" you once again. But like always, me trying to "protect" you back fired like always. I guess I will stop and let everyone bash you from left and right, up and down... and until they run you off the boards completely.
Sorry, but i think this whole thing is sad. Any way you look at it, it's sad.
Hold the phone.....Joonie has nothing to do with this post. She is a very nice person. As am I.
I don't care who you are, or what you post about. If you post on an open forum, you are opening yourself up for criticism. I'm sorry that your life is so pathetic that you enjoy hearing about Roxy's turbulent life. And I didn't call MY husband white trash...
Now and then...I don't care if you respect me or not. Unlike Roxy, I don't get my self worth from you on this board, or an alcoholic abusive husband (Roxy's own words). Put your big girl panties on and move on if you don't like what I say.
And, how dare you shame Joonie. Why don't you mind your own business and let everyone work out their own problems. If Roxy and Joonie have a problem, let them work it out. Who the heck are you?
And, for the record, I didn't have anything to do with Deanna not being on this board. I like and respect Deanna very much. It was my understanding from other (more reliable) sources that she was under the weather. Roxy is just mentally unstable and wants everyone to feel sorry for her and is trying to drag others along with her. Deanna was treated badly on this board, but not by me.
One more thing.....take your own advice....
Stop reading her posts if you don't like them! It is such basic advice, but no you have to read it and then attack. Grow up for goodness sake!
WHY DO YOU GUYS NOT JUST STOP PLEASE....TERESA I spoke with Deanna today and she is under the weather. She is very anemic and begins treatment for that this week. One of the knees she had surgery on back in Feb. is giving her some problems again. She says it feels like she might have torn a ligament in it. I promise to keep everyone updated on her and I will pass along to her that everyone is thinking of her. She is a truly wonderful and compassionate woman. Even tho she is in pain and very worried about her anemia, she was more concerned about what was going on with me and how me and my family were doing and coping with things in my life. That, is true compassion.PHATS- I am not labeling anyone but if you think Roxys problems are mental dont you then feel that your verbal attack on her will ony make her feel worse, Mental illness is just as bad as physical illness.
UGH!!! Here we go again!!!!
First of all the pictures that Roxy posted of her hands do not look deformed to me.
Second she insisted before and posted the doctor had told her before the "chains in her head" were from her STROKE and would take a while to go away. So what is it a stroke or a pinched nerve? HMMM!!!!
Roxy uses this board to get attention and receive sympathy and if that is what this board is for that keep telling her how sorry you are for her and her stories and lies will contiunue.
If you read all her posts you will realize she does have some mental issues that need treatment and I wish she would get it instead of using this board.
Isn't there a support board for people with bipolar disorders that could maybe identify with her and be helpful?
I have been under the weather for 2 months now and have just been reading and not posting much, UGH!!!!! I probably have been as bad as Roxy LOL!!!!! But unlike her I have hard time posting when I am so bad UGH!!!!!
I guess I don't need the sympathy from the board just the knowledge, sharing and support I get from reading and knowing I am not alone.
Here's what I don't understand???? If you don't want to read about this stuff, then why are you. If a post doesn't interest me or I don't have something positive to add, I just scroll on by. All the mean and insenitive comments just serve to prolong the thread. I think maybe all of you really just enjoy this kind of thing, the arguing, bickering, etc.Ugh Ew. No bickering for me please. If I want to bicker I will ask my teenager a simple question lol. So enough about that subject.
It was mentioned before about joint replacements in the hand and for fingers. How long do those last? Is it like when you replace a knee or hip? Do they just do one hand at a time? I'm nowhere near needing replacements for my hands or fingers even tho I have some fingers starting to curve real funny like. I am just curious about this.
Have you tried finger splints? Several of my fingers have swans neck deformities and the hand therapist recommended that I try some. They seem to be helping.Thanks for posting that link Pin. That was very interesting. There are two pictures that relate to my situation there. One shows a Mucous cyst on an index finger. I have one exactly like that on my ring finger. My finger nail is also damaged from it just like it mentioned. Also it shows a thumb extension deformity. I have one thumb that will do that exact same thing; but it does fall into regular position. It's not any more painful than other fingers.....but it was interesting to see that it is related to arthritis. I always thought I was "double jointed" in that thumb. It's been that way since I was a teenager.
Gram; you are having the same problem I've been having the last couple of months with my hands. If you don't have any splints at all you can get some at the drug store that do work well. I wear them at night and have found them to be helpful. Only on a few occations have I woken up with them asleep while I have the splints on. If I don't wear them it happens every night.
I had splints made by occupational therapist, they took measurements and cast of my hands and arms.They are only for wearing at rest or to bed but i find them very uncomfortable.I have velcro ones for the daytime but they too hurt more than they help, esp. if my hands are swelling.I hope you have luck with themThe ones I wear were a little uncomfortable at first; but I've gotten more use to them. I can't really function in them; only rest. They do seem to provide some much needed support though. They have velcro straps so you can adjust how tight you wear them. I keep mine fairly loose. Their just mainly to keep my handss/wrist from curling into the fetal postion while I sleep. custom splints should not be uncomfortable...go back and get them refitted I have one splint from when I slid down the wet hallway floor last winter. HA! That was a sight to behold!! When we got done laughing I realized I hurt my wrist lol. So I have a splint from walgreens from that. I will send hubby for another one tonight when he gets off of work. I am going to give this splint thing a try. This is just driving me bonkers. I guess I have to get used to not sleeping on my hands too. I'm sure that will help lots. I will let everyone know how it goes. Good Luck!Grammie,
I sleep on my hands too! I'm sure that doesn't help my pain.
Good luck with the splints! Phats UGH!!! Here we go again!!!! First of all the pictures that Roxy posted of her hands do not look deformed to me. Second she insisted before and posted the doctor had told her before the "chains in her head" were from her STROKE and would take a while to go away. So what is it a stroke or a pinched nerve? HMMM!!!! Roxy uses this board to get attention and receive sympathy and if that is what this board is for that keep telling her how sorry you are for her and her stories and lies will contiunue. If you read all her posts you will realize she does have some mental issues that need treatment and I wish she would get it instead of using this board. Isn't there a support board for people with bipolar disorders that could maybe identify with her and be helpful? I have been under the weather for 2 months now and have just been reading and not posting much, UGH!!!!! I probably have been as bad as Roxy LOL!!!!! But unlike her I have hard time posting when I am so bad UGH!!!!! I guess I don't need the sympathy from the board just the knowledge, sharing and support I get from reading and knowing I am not alone. [/QUOTE] 1 - My hands have several deformities that are obvious on the xray and mris. Infact I have erosions on my hips, pelvis, feet and hands. Why do you think it was so easy for me to get SSDI and an aid???? 2 - I was told the chains in my head COULD be caused by the stroke but when they continued I was sent to a specialist to see what was up - he concluded it is a pinched nerve 3- If you think my past posts show mental illness - show me the posts. I am quite familiar with mental illness. The difference between me and most people is when I feel half way decent, I actually am elated and do all I can to live life to the fullest as I have all my life. 4- This board used to be a place where we all shared our lives. It was like a family. We felt like close friends. People like you have made it a dangerous place for people who are not coping well in the first place. 5- If you were "just as bad as Roxy" you would not have all the energy for all of your nastiness. 6- I have found I no longer need this board. I come back here once in awhile to check on some friends and update people who actually care about me. For the most part, if I was not so sentimental about this board and what it used to be - I would have no desire to come here at all. I like the format of AI. I wish there was another board like it. There are an ugly few that have spoiled this board. For the most part, there are great people here that I miss. If you do not think my "life" is RA related, you obviously do not have RA to the extreme that I have it. RA effects every facet of my life. Yes, it effects my decisions as to whether I keep trying with my husband. I have always been fortunate to have a lot of affection in my life. I enjoy it and I miss Brett when he is gone. I also know that I will never date again. I would never ask someone to have to take care of me and be in a partnership that I cannot give my share. Brett seems to be willing to continue to try to work things out. I am grateful for that as he knows exactly what he is getting into. I also have always loved Brett deeply, when he is sober. When he relapses, I do not recognize him and he is not the man that I love. My guess Daisy is you are a very unhappy woman with few friends. You asked for pictures a couple of days back. I took them the same day you asked, I just did not get around to uploading them on to hubbies laptop to resize and upload to the internet. I took the time to do it since, I do not feel like washing dishes. Here is what my hands look like while being on a pred dose pack and not much swelling and inflammation. The swelled looking parts of my fingers are always like that, they are not inflammed or anything just how they look even when my hands were at their best. Right Hand - which is my worst hand and is the one I cannot make a closed fist with hardly ever.
Left Hand - it is a little gimpy My middle finger is the same length as all my other fingers.
Don't feed the animals. Phats Phats! go dig a big fat hole and slither in
What nasty talk coming from someone who has only been on this site for a month???..
Phats Does'nt take more than a second to sum you up
Roxy,
UGH!!! Here we go again!!!! First of all the pictures that Roxy posted of her hands do not look deformed to me. Second she insisted before and posted the doctor had told her before the "chains in her head" were from her STROKE and would take a while to go away. So what is it a stroke or a pinched nerve? HMMM!!!! Roxy uses this board to get attention and receive sympathy and if that is what this board is for that keep telling her how sorry you are for her and her stories and lies will contiunue. If you read all her posts you will realize she does have some mental issues that need treatment and I wish she would get it instead of using this board. Isn't there a support board for people with bipolar disorders that could maybe identify with her and be helpful? I have been under the weather for 2 months now and have just been reading and not posting much, UGH!!!!! I probably have been as bad as Roxy LOL!!!!! But unlike her I have hard time posting when I am so bad UGH!!!!! I guess I don't need the sympathy from the board just the knowledge, sharing and support I get from reading and knowing I am not alone. 1 - My hands have several deformities that are obvious on the xray and mris. Infact I have erosions on my hips, pelvis, feet and hands. Why do you think it was so easy for me to get SSDI and an aid???? I was approved for SSDI in 5 weeks. Maybe I am just as bad as you LOL!!! 2 - I was told the chains in my head COULD be caused by the stroke but when they continued I was sent to a specialist to see what was up - he concluded it is a pinched nerve I am glad that 2 months later you finally saw a specialist 3- If you think my past posts show mental illness - show me the posts. I am quite familiar with mental illness. The difference between me and most people is when I feel half way decent, I actually am elated and do all I can to live life to the fullest as I have all my life.You are definetly manic at times and very depressed at times in your posts. You thought the Humira worked within hours you were better, Can you say Placebo effect. 4- This board used to be a place where we all shared our lives. It was like a family. We felt like close friends. People like you have made it a dangerous place for people who are not coping well in the first place. You are the only person that ever posted about intimate details of your personal life. 5- If you were "just as bad as Roxy" you would not have all the energy for all of your nastiness. I don't, your posts are definetly more detailed then mine could ever be. 6- I have found I no longer need this board. I come back here once in awhile to check on some friends and update people who actually care about me. For the most part, if I was not so sentimental about this board and what it used to be - I would have no desire to come here at all. Please do not post or read if you no longer need this board. You have your "angel" your aide now to be your only friend. You must drive her crazy!!! She surely took on more than she bargained for with this job. I like the format of AI. I wish there was another board like it. There are an ugly few that have spoiled this board. For the most part, there are great people here that I miss. I am not ugly and how many people on this board think you are a great person? If you do not think my "life" is RA related, you obviously do not have RA to the extreme that I have it. RA effects every facet of my life. Yes, it effects my decisions as to whether I keep trying with my husband. I have always been fortunate to have a lot of affection in my life. I enjoy it and I miss Brett when he is gone. I also know that I will never date again. I would never ask someone to have to take care of me and be in a partnership that I cannot give my share. Brett seems to be willing to continue to try to work things out. I am grateful for that as he knows exactly what he is getting into. I also have always loved Brett deeply, when he is sober. When he relapses, I do not recognize him and he is not the man that I love. I do not think anyone else in this world has RA to the extreme you have it nor is anyone elses life as screwed up as yours. You are right I do not have an alcoholic drug addicted husband. My life has not been smooth sailing and I have learned from past mistakes and tried not to
I haven't been around the board for that long, joined last year, but had to re-register after some hoo-ha and couldn't get in.
You've had a really tough run, and I admire your's & Brett's courage.
My heart goes out to you - and I wish you both max strength and courage
to carry on with your marriage, Brett's addiction issues, and your own
health issues.
Posted: 21 May 2007 at 1:09pm | IP Logged
Daisy wrote: