I would like to hear from those that their RA is considered severe. It has been only two years for me - from hiking, to swimming, to biking, to climbing, - to just surviving. Please tell me how you cope?
I would spend hours planning out my day so that when I had to walk up or down stairs I would get everything done that I could at that level. I also spent hours planning on how to build a lift to get to the basement where the wood furnace was.
In my case stress can cause flares and I know I have to get plenty of sleep or that causes flares also.
I don't have much to offer except to lay down and watch the stupid TV and plan your day.
Ron
HI ROXY I AM LABELED AS SEVERE. I HAVE TRIED AND FAILED TONS OF MEDS INCLUDING ENBREL IN THE FALL WHICH MADE ME LOSE THE FEELING IN MY FEET BUT DID NOT HELP THE RA. AND 2 1/2 WKS AGO I HAD MY FIRST REMICADE WHICH I AM JUST NOW GETTING OVER THE BAD REACTION(HIVES SWELLING RAW MOUTH SORES ON CORNERS OF MOUTH GLANDS PAIN.) I HAVE HAD RA ALSO FOR 2 YRS I SEE THE RHUEMY AT LEAST EVERY MNTH EVEN MORE SOMETIMES. I HAVE GAIED SO MUCH WEIGHT MABEY 80 LBS BUT DECIDED AWHILE BACK TO TRY TO HELP MYSELF I USUALLY GO SWIMMING UP TO 5X A WK AND I HAVE BEEN GOING TO JENNY CRAIG SINCE LAST JUNE AND HAVE LOSAT 30 LBS . BUT WHEN I GOT THIS REACTION TO REMICADE THEY 3X MY PREDISONE AND I HAVE GAINED 10 LBS .
I USED TO WORK FULL TIME AND EXERCISE 6X A WEEK I HAVE A 7 YR OLD BOY IN HOCKEY AND SOCCER AND LACROSS SO LIFE WAS FULL .
I WENT TO WORK ONE DAY WITH A LITTLE COUGH BY THE TIME I GOT HOME I HAD A 103 FEVER 2 DAYS LATER I HAD A COLLASPED LUNG AND PLURESY. IT TOOK 2 MNTHS TO GET BETTER BUT THEN MY BODY SHUT DOWN JOINT BY JOINT I ENDED UP IN A WHEELCHAIR IN A WEEK. I GOT DIAGNOSED WITHIN A COUPLE OF WEEK AND HAVE SINCE THEM TAKEN SO MANY DRUGS AND FAILED THEM ALL. I NOW HAVE RA EVEN IN MY VOICBOX MAKING MY VOICE WEIRD AND CAUSING ME TO CHOKE AT NIGHT .I HAVE NOT WORKED FOR 2 YRS AM ON DISABILITY. MY TOES ARE ALL DEFORMED AND MY FINGERS HAVE STARTED TO SPREAD OUT TOO.
HOW I COPE MOST OF THE TIME I PUSH FORWARD BUT I DO TAKE A ANTIDEPPRESENT TO HELP COPE . MY SON HELPS KEEP ME GOING I HAVE NO CHOICE. I SEEM TO HAVE THE DARK DAYS WHEN I FAIL THE DRUGS I GET MY HOPES UP AND THEN SLAMMED DOWN. ANYWAYS I JUST TRY TO HAVE THE BEST LIFE I CAN AND FIGURE THAT ALOT OF PEOPLE ARE WORSE OFF THAN ME. ANYWAYS GOT TO GO ANY QUESTIONS JUST ASK.....TERESA
Thanks you guys. I want to learn from you on how to cope. I can't seem to get passed missing my old life and feeling useless. If I did not have my sweetheart daughter - I think it would be difficult to keep going. My husband and son do not understand at all. Sometimes they blatantly call me lazy or I ask for a pain pill and they say after this show, or after I do this. They have no idea how much that hurts because pain pills take time to work and the pain is excruciating. Then I resent them. I am going to a pain clinic soon. I love pt but it seems to only help when I am in the pool. At least so far. Sorry about all the pity party - sometimes I am just so sick of this and do the why me. Teresa - You have had a worse time than I have with this disease. I am sure your son makes a big difference. Ron, I am really hating tv even though I watch it. I am trying to train myself to read again. The worse is - lately it has been harder and harder to type.Coping... hmm. I cry. I rant. I take naps if I can sleep. I read about my disease. I go on here. Then, I get mad at the people that are supposed to be helping me. I always have a list of things I want to do and things I need to do. Surviving day-to-day keeps me preoccupied.
But I am going to see a counselor because I am overwhelmed. Right now, most of my medications for RA have been stripped away and that worries me because I hurt so much more and fear that this was a moronic decision from a bad Rheumy.
So I fight. I guess that's how I cope. I call friends and family. TV doesn't do it for me and it's really hard to read, one of my real passions.
But I love... that's the big secret. I love my friends, my daughter, my son, my niece, my mom, my uncle, my friends on here. I listen. People so need someone to just listen to. And, most of us, no matter how sick we are, we still have the ability to do those two things: Listen and Love.
The illness is so devastating. You feel like your worth has diminished. But it isn't. It just changes. Different parts of you open up for discovery. That is what I am learning in this. I didn't know I was such a crusader type. It has come to me as a surprise. I didn't know I get a kick out of winning a conflict. I was taught that conflict was bad and that you should also respect authority regardless of whether or not they were right. I respect it, but I expect the same in return.
I find comfort in my surroundings. My home has become my sanctuary. It's not very clean and orderly. But it is filled with all the things that comfort me.
It's the little things that get you through, those conversations with Colton. Watching Kelsey playing in her own world, knowing that with you she is safe and happy. Just giving her that, and giving Colton a home is something that is of irreplaceable worth. Seeing Brett actually getting better. Still finding ways to recapture your love.
It takes time, Roxy, but it will get better. I promise.
I too have been labled severe. It has been about 4.5 years since I was diagnosed. I have been hospitalized twice, had plueresy (sp), been on DMARDS and All 3 TNF drugs. Ended up allergic to the TNFs and plaquenil. Currently take mtx, cyclosporine, neurontin and will be going for my 2nd Rituxan infusions in a couple of weeks. So far the Rituxan has helped, and I have not become allergic. I don't know what I would do w/o pain meds. I would not be able to do anything.
I still work part-time. I was lucky enough to have a personal long-term disablillity plan (which I bought when I saw what happened to my sister, who has lupus) and you can go on part-time permanent disability, so I now work about 17 hrs a weeks (sometimes less, depending on how things are going) and receive 50% of my pay from my job and 50% from insurance. It was 3 years after I bought my plan that I was diagnosed. So, I feel very fortunate to have the insurance.
But, even tho my job can be very flexible, I feel guilty when I cannot finish everything. Sometimes I get stressed out that I am not doing enough. Then the stress makes me sick. We all just have to sort of find our own path through the maze that is RA/Fibro and if we are lucky we find our way through, even if its just a break in the hedge.
Hope you all find ways to cope. This last 4 years have done their best to break me. But somehow, I keep going on, I don't have grandchildren yet, so I have to be around for that momentous occasion. I find something to keep me going
Good Luck
Hi Roxy-My RD tell me mine is severe too They said my anti-ccp was over 200 which is the highest she'd seen. I asked here if that is really bad, ad she said basically 'yes-and if you smoke your toast!" Well, I did smoke for about 4 years until 2 years ago.
As you know have had pluresy several times, etc., and my brain function/thought pattern has gone downhill. One thing I will say is that the remicade seems to be helping. One of my biggest dissapointments now is that I REALLY want my semi-athletic body back, and don't know if it's possible. Also depression...I have to take anti-depresants. One thing that has really helped me is that I see a really good counselor about every 2-3 weeks. Not much advie on coping as I'm still pretty new to this too, and it sounds like you are having many more problems than I am. But my faith in God and His amazing love for and blessings to me and YOU GUYS are what really keep me going.
I also am considered severe. I was diagnosed a year ago, so I'm still getting used to it all.
I work and take care of my pets and house. I live alone now that my daughter is away at college, so I don't worry too much about house work or cooking. Some days after work I just come home and go to bed.
I read a book called Stop Being Your Symptoms and Start Being Yourself that helped me.
I also stopped researching and reading about RA all the time, and I don't read message boards as much as I used to. I found I was thinking about RA waaaay too much. I don't want to talk about it with my family as much as I used to either. They know the Remicade is helping me a little bit, so I just let them think I'm better than I feel sometimes. I find I feel better when I don't talk about my symptoms and pain all the time.
Another thing I've done is tried to start noticing the good things about my life instead of focusing on my limitations. That isn't easy for me sometimes because I tend to get very depressed, but I'm trying.
You all are giving me great insights. I had no idea how debilitating fibro was. In fact, I think I was like one of those "it is all in your head". PLEASE DON'T THROW THINGS AT MEAlright I won't. I hate the attitudes of others. I will not put up with it from anybody. I have to face the fact that I have this disease so if they are going to be in my life, they do to. I think it is just cruel about Brett's and Colton's attitudes. Sometimes, I hurt too much to get up and get something for pain too. I've had to cry out to Julie to get me something. She just goes and does it. You need to remind them that they perfectly healthy bodies but their hearts could use a little readjustment. Really, we are sick. They just need to face it.
My daughter also keeps me going. Her support really makes a difference in my day. She knows what severe pain is and she keeps me sane when the whole world seems to think I'm okay. She knows. She seems me unable to walk, cook, etc. She sees me crying in pain even when I tried to hide away from that.
mine is severe but i still worked for 4 years with it.before i lost insurance i got worse and rheumy was always changing drugs but nothing lasted very long. i go day by day with pains now and there is nothing that i can do but live with it.i do what i can for myself here and learn how to get things done by myself. wrists are getting worse and its getting harder to shower and ever dryin off isn't easy.i don't see any hope for myself in the future and i live alone.i don't know what i will do later on so i live for today only.hope most of u get help and can get better soon.i go to chat room with friends everynite and they can make me laugh at time so that helps also.i was glad to find ai site back in 2001 when kimmy had it,it really helped me to find others to talk to about ra.family doesn't understand about ra and just think its in my mind.they can see the damage to me but don't think i should be in pain like i am.You had to wait so long for disability and that is so discouraging. It really does seem to cut the soul out of a person. Do reach out for all the services that are available where you live. You are probably going to have to locate them through Senior services. But those are the people that have helped me the most. There are also Centers for Independent Living located across the country. The one here, ABIL, is going to help me get ramps and other things. I will pay for the ramps by going to some of their social activities so I will be able to get out of the house and meet other people instead of just doctors all the time.
The other thing to start looking to is your state Long Term Care to help you stay healthy within your home. Since your family isn't going to be supportive, you have to plan for help in these ways.
Your family is living in a state of denial. My parents did that and it hurt me deeply. Now, after close calls themselves, they have changed their attitudes. My siblings still don't get it though. They won't even discuss it which hurts. My son kind of avoids me right now. I think the wheelchair is a bit much. He still shows his love, but he can't deal with it. If I need something though, he is there. Julie, my girl, is the one that gets it.
The other thing that I have done is I have built myself family out of friends. For instance, my exboyfriend is blind. We've stayed friends because we both get what is happening. My girlfriend has a disabled daughter and so does my sister. My cousin has become an aid for another special needs kid. My aunt and uncle are now in their 80s and their frail health helps them understand. And, I have met some good friends on here, some of which I communicate with outside of this forum.
But still there is that isolation. So, I am going to follow some very good advice and see a counselor.
You have to build yourself a support system one way or another or this illness will suck the life right out of you. You deserve to have the best life possible.
I have a question. If you are diagnosed as mild/moderate RA, does thatI don't know. From what I've read is that if you start out moderate, you most likely will stay that way. Mine waxes and wanes, but was severe from the start. Roxy, I know was the same way.
It seems that some people can have it for 20 years and still have it under control and be at a mild or moderate stage.
I don't think you need to live with that fear. You have such good chances at staying under control especially if you are responsive to the medications.
I still have hope that I will bounce back again. I've done it a couple of times already. Remicade worked so well for me. I wish that they would try that again. There are so many medications that are just on the horizon. You might never know what some of us have.
I have severe RA .I had to give up work and claim disability when I was 37. I just couldnt get up in the morning and function properly. Mine started with a joint in my little finger swelling up years ago and feeling tired. I just didnt want to give in as I felt worse.Eventually I went to see my doctor as when I walked I felt like my shin bones were going to pop out of the skin. I had a blood test and doc told me I had RA . I was given arthrotec and pain killers which made me sick so I stopped taking them and carried on with life, ignoring all the signs. I was sent to see a rheumy after my knees and hips started to hurt and was treated with lefluminide which also made me ill so I was put onto mxt. The side effects for me were horrible so again I just took myself off of it and didnt go back to the doctor as I thought I could ignore it(BIG MISTAKE). My G.P. was also not bothered as when I saw him he said "you'll just have to live with it??????? When we moved house I saw a new G.P. and he contacted a new rheumy and I was put on gold injections which made me ill as well but this G.P wouldnt let me give up, he said I needed something else and I now take humira which so far hasnt given me any side effects other than UTI'S. My g.p. sees me regularly as it is impossible to get regular Rheumy app.s. I was never given much info by my first lot of docs so I didnt realise how serious RA can be . So with my own ignorance and uncaring docs I have done a lot of damage.I have RA in my feet, knees, hips. My muscles around my ribs are inflamed, my hands, elbows and neck are also bad. I have just spent a week in bed as I just didnt want to get up ( maybe depression set in) but I felt like it was too much effort and the pain was so bad. My family are a blessing though. I have 3 children 2 girls 18 and 12 and a son of 15 and although they could be of difficult teenage years they arent.They all help me a lot and dont complain if i need to cancel plans we have made or if I just need them to help me.My husband too is wonderful, he encourages me to do things but helps out all the time.He goes to work at 6.am but does all the packed lunches before he goes and comes back at 8am to take the kids to school. I make myself do what house work I can but he does a lot of the heavy stuff and cooks dinner if i am bad .He said I am stubbon as I keep saying i'm fine and do things for myself even though it hurts but If i give up completely then this RA has got me good and I wont let it win.This week I am out of bed and feel a whole lot more cheerful about life.This website has been such a help. Whew never really told so many people my problems.Thanks to all of you for listeningpincushion, thanks for telling us. You shouldn't keep all this to yourself. It is just too big a load to carry.
sophistablack, have you had any luck finding someone to help you with your elbow?
Pincushion, I feel very blessed by having good doctors from the beginning. My daughter is always supportive and I think my son and hubby are getting better. Last night I yelled at them over and over - Don't you get it, I am sick because they were making snide comments. This morning I got up to a cup of coffee next to the bed, my safe with painpills in it next to bed and my cane. I don't know how many more times I will have to lose it but my son and hubby just do not get sick and don't understand. They also do not get attached to animals the way I do and they had a hard time with me grieving my little Chico. This latest fibro attack had them really suspicious as I usually swell. One day at a time. I am glad Pincushion you come here to share. We need this. Sophista, I am also so happy for you that Enbrel is helping. My Enbrel is supposedly controlling my RA but this fibro is one more thing thrown into the package that is like starting from square one - except all the medical professionals say "I am so sorry, you obviously have fibro but there is not much we can do for it" I pray this fibro flare goes away soon as it is very discouraging. I am also dependent on my painkillers. In only two years I have a lot of RA damage. That and fibro make me know I would not be able to do this without pain meds and my sweet daughter. Hubby and son are getting better. My last rd, she said RAand fibro cause a lot of divorces
Alfie - welcome back to AI. Some great people on here
There is only 1 thing I can think of that might really help you cope and with luck might make you better. GET RID of STRESS!!! You have more stress thrown at you than anyone I can think of. Stress is a killer. Didn't one of your docs suggest bio feedback?
That and having the worst joints replaced
I swear even wrecked joints do not hurt as bad when my stress level is low. Heavenly Peace
I think RA needs to have the kind of research cancer gets I mean if they can not cure it maybe thay could stop it from getting worse without a drug that wrecks the liver and immune system.... some day someone will find a medicine that helps much more than what we have now.
I was diagnosed with severe rheumatoid arthritis 10 years ago - it changes constantly but I find the fatigue and the stress that it has caused is worse for me than the pain. I have a history of depression in my family & while I know it is a symptom of RA I often feel I have a double dose. I am feeling down at the moment - someone once said to me being an invalid is being 'invalid' & I think that is the case. My attitude to people is now so hard, most dont seem to care. I live on my own & like others am expected to carry on doing everything that healthy people or those with partners do. I am always dealing with officials in one form or other which is stressful & friends & relatives (the religious ones who should care seem to be worse) just seem to switch off completely. I am feeling so mad about it all I am tempted to write a letter explaining how I feel but then I would probably lose my temper. In the last few weeks I have had my little dog diagnosed with heart failure but I cant afford the medication necessary, then he ate 1/2 box of chocolates on New Years Eve (a lot of cleaning up needed there!) - he is ok thankfully, then I let the bath run for over an hour (ra memory) & had a great flood. Most people I knew were away, the insurance co. were meant to send people to clean up, they forgot about my cartons of books in my garage floating in a lake of water, I pulled them out & in the process tore the rotor cuff muscle in my right shoulder so had to clear up water with towels that I couldnt wring out at all, emailed my wealthy but uncaring brother for help which was ignored, most other people I know were away on Christmas holidays, my car has broken down - I can walk about 20 mins without a car, dont know how I will find the money to get it fixed and my vacuum cleaner has died on me. I suppose this would make a lot of people depressed but I am tired of hitting my head against a brick wall & batttling continuously. The few relatives I have are not the slightest bit interested in my life but are impressed with my uncaring brother's life - impressed by his $$$$$Cassie, why haven't you been telling us about all of this all along. You're always there to make people like me feel better, yet you've held this all in. Your experience with people is exactly what hurts me the most. I do think you need to blast people a bit (not psycho or anything). My exboyfriend, the one that is blind, has a really good philosophy when dealing with people. He says if he doesn't tell them that they are doing something wrong then he is doing them a disservice because they are not going to correct it. So if you need to write some letters, do so. You don't have to send them if you don't want to. Send them, tear them up or burn them, whichever give you the most peace.
Do get help with the depression. I am. I see the counselor later this week. I cry because this illness hurts so much and I feel abandoned. You know it's true because you've responded so kindly to many of my posts.
I just want to reach out my arms (don't think they'll reach that far) and just hug you and let you cry. Then I want to get on the phone and start just calling everybody for you. But I can't do that. Yet, you can. Make a couple of calls of day.
Send your brother a package on what RA is and a letter on how it feels to be abandoned by him. It might not do much good but you will at least expressed it. It might make him rethink his attitude. Use something from your childhood to try and break through that cold heart of his.
We have to tell others exactly what it is like or they will never change their attitudes. People feel sorry for people with diabetes or cancer. But that's because there has been so much in the news regarding those illnesses.
You have a right to expect some caring from people. Don't hold it all in any more. It doesn't help you cope. My ex says I'm resilent because I do reach to others.
Maybe you and Tinker could connect via email or phone.
Cassie, you are cared about because I do care about you. I cannot fix all those problems. But when you share them, you spread the burden of them out over others. That's when I start to learn solutions that I would have never thought of because I'm just too tired and too sick.
And no matter what, I remember who my greatest Companion is. I pray all the time. Some how He always presents a solution.
Hang in there.
So far mine is has been in the moderate/severe range. I had read several years ago that statistically, approximately 15% have very mild RA, 15% get aggressive RA and the remaining 60% have moderate RA that progresses throughtout your remaining years. These stats were taken over a long period of time and may not reflect the more aggressive treatments with the biologics, etc.
I am so sorry to hear the depression in so many voices. This disease is bad enough alone. We should not have to be treated so poorly by friends and family. I wish we could all get together in person and have ourselves a big ole cry, than some hugs and have a hot guy serve us lunch and rub our achy bodies!
Just had to reply & send you some much needed hugs
I'm fortunate in that I have a partner to share the burden with (the practical help & physical work at least!) but prior to meeting him spent the best part of 10 years on my own so know how hard living with RA is when you feel you have absolutely no-one. I think the loneliness thing goes deeper than this with us & anyone suffering long term chronic illness though - it's a "loneliness of the soul" - my partner is loving, caring & helpful but I still deal with depressive feelings by withdrawing into myself & shutting the whole world out including him - 'cause they'll just never understand what this disease does to us will they? I'm very new to the board tho' & have found it a Godsend so far...now I know I have somewhere to come when these feelings hit.
I really hope you feel better tomorrow after a good nights sleep Cassie & will be thinking of you xx
(P.S. I'm Tinder, a newbie, not Tinker who Deanna mentioned! Just in case my silly name caused any confusion lol!)
Cassie, Tinder - Trust me. You can really let it out on here. I truly believe this board has saved my life. I don't know why AI is the one I bonded with but I am so comfortable here. Without this outlet I can have very morbid thoughts since my life has changed so much. I wish I could say I deal with it well, but I think of my pre-ra a lot. I have very little family support except for my sweet daughter.
Can understand why the divorce rate would be high amongst us with the devastation this illness can cause - it's a bit scary really as I get married in 2 months! I'm sure we'll be ok as a couple if I try not to withdraw into "woe is me" mode as often & try to share my feelings more. In my most self-pitying moments, when I wanna just be on my own & cry, I say stuff like "There's no point me telling you how this feels 'cause you'd NEVER undertand unless you had it yourself". He asks me to print him stuff off about RA so he can try. I don't bother and just sit there thinking "If it was him who had this I'd have researched this & been an RA expert by now!" and sulk & self-pity some more! I'm an idiot sometimes!
Is your RA still very active Roxy? If it is I hope it is controlled better soon and you find the best relief you can from it. I believe things happen for a reason and in my lighter moments can see what lessons I've learned from having RA - greater compassion & empathy for those who are suffering in life being probably the main one. Know just how easy the dark thoughts creep in on the worst days tho' too - and how sometimes all you can dwell on is what it's also destroyed & stolen from you...
Really lovin' this board tho' - great therapy! &nbs p;
Roxy, So sorry you are going through such a rough time. The doctor said I had serious RA. Since I also have extensive OA, Sjogren's Syndrome, figromyalgia, and allergies to almost everything including most medications, I guess I might fit in the severe category. Judging from the number of medications I'm on and the fact that I've been turned down by at least three long term health plans due to my meds, I'm at least moderate if not severe. Oh yeah, at the same time I got diagnosed with RA, I had 30 stitches in my face and lost a large part of my nose to skin cancer. Lets say the last three years have not been the greatest.
When your whole life gets turned upside down, you have to make some important decisions. Sometimes they're made for you. I couldn't continue to live the way I was. I couldn't keep working full time for starts. The stress level of trying to work, keep house, and stay reasonably healthy was just too much. After a lot of career and retirement counselling, I decided to work half time. It meant moving to a new school and starting all over again at 60. It was the best decision I ever made. Now I spend equal time working and trying to stay fit. I hired a PT to work out a program for me at our local gym. I had been involved with an arthritis exercise class, but it was too much for me even though the people were mostly 20 years older than me. I miss the companionship, but I'm doing better physically, or relatively better. The RA is still not completely under control. I'm losing the sensitivity in my hands and I now have cataracts. I'm an artist as well as a teacher., so that's hard.
I'm coping better today than yesterday, so believe me I have times when I'm depressed. I have learned that you can't depend on others for your happiness. I am doing things now that I've postponed for years because I was always taking care of everyone else.When you lose your ability to function , it does something to your priorities. I'm working on a collection of painting. When I have enough, I'm going to try out for a local exhibit. For the last 25 or so years I've tried to make it without success in children's publishing. I write and illustrate children's books. It's the kind of business where you have to be able to meet deadlines and I can't do that any more. So I'm doing stuff that I can control.I have to work in short spurts and I have to use a magnifying glass, but I keep trucking.
You may remember I went to Rome with my husband last summer. It was really hard on me so this summer while he goes to China with his brother, I'm doing my own thing. We'll go together to LA to visit with our son first for a few days. I'll go along for that then fly home while they head east. What I guess I'm saying is you have to come to terms with your limitations and make compromises. I'm not playing the martyr any more. I don't think you can expect your loved ones to completely adjust to you. You have to make those adjustments
I asked my rheumy to give me the least amount of medication possible. The MTX was making me so sick I couldn't function for 3 to four days afterward.I'm trying to stay off it. The RA is a little worse, but My head feels a lot better. To make up for that, I'm really pushing myself to exercise, eat right (hard to do on prednisone)and am diligent about wearing my splints. I'm supposed to wear wrist splints alternately on one hand and the next night the other. I wear them on both hands every night. I walk as much as I can on flat ground. I don't take any pain medication except extra strength Tylenol. This summer in Rome I was using a cane, now I'm not.
Roxy, I do think you are having a rougher time than me right now and you're in a different place. It's harder to be your age and disabled than to be a senior and have a lot of your life and experiences behind you. You are a smart and compassionate lady. I think you will come out of this on top. Hang in there.
Tinder, I think it is cool that your fiancee wants you to print out stuff for him. That's step far ahead of a lot of people's mates especially in the beginning.
And, he can over time understand more. It's good to educate your family and friends on this disease.
Thank you all for your support and empathy with my situation and the support and understanding extended to all of us with this disease. Deanna maybe your first book could be one on living with rheumatoid arthritis - there are very few around and with your sweet and understanding nature I think it would be a bestseller.Good to hear you're feeling a bit stronger today Cassie. The old Anglo-Saxon reserve does nothing for nobody - except worsen stress-related ilnesses maybe! When I first visited Ireland (where my fiance's from) I was amazed at how friendly & open the people were - strangers pass you in the street & say "hello, how are you?" which I found very strange! Took me a while to realise it's actually us English who are just uptight & weird lol!
Deanna - you're so right. I am fortunate that I now have someone who wants to understand this & should try to educate him rather than use him as a verbal punchbag! My main problem, even after 16 yrs of living with RA, is still denial. I've been blessed enough to go long periods with only mild-moderate pain these last few years. During these periods I like to kid myself that my RA is gone away & the dark days become a faded memory - then BAM! it rears its' head again & the old feelings I should've dealt with years ago are right back!
To Roxy too - please ignore my "Is your RA still very active?" question in my last post. Being new to the board I'm still getting used to "Who's Who?" on here so wasn't reminded at the time of posting exactly what it is you're dealing with. Really hope it didn't come across as insensitive in any way. You gave me a warm welcome when I first came on here that was much appreciated.
Cassie, I will try to write something up and post it. I am saving back info to write a book because I have found it so hard to find "real" information about this disease. I hope Alan forgives me, but I too think he is a charmer. I believe I did ask him if he had any brothers near where I live. The world certainly needs more men like him. He has one lucky wife and son.
Tinder, I still live in denial. I'll have a couple of days and think I can regain my life again. Then I'll have one of those devastating bad days that reopens my eyes. Part of it is the disease that comes and goes in its severity. Part of it is other people, doctors, social agencies that make you have to prove your illness. But it is there. So, it's best to just face it head on.
A nice ending to my story of woe. I emailed an old friend who lives overseas outlining my recent hard luck stories. Today I received a parcel including: