Pain.........
makes me feel unkind
makes me feel scared
and apprehensive
and lazy - I just want my body on a soft cushion to cope
distracted - I cannot read or carry on a conversation
When I take painkillers, it never takes away the pain completely but it dulls it. I used to take codeine based painkillers but as I am allergic to codeine, the itching would make me feel crazy, like a horrible case of poison oak so I had to switch to Percocet.
Percocet makes me feel stupid
dull
fearful (afraid of addiction )
lazy and nervous
but I can cope, I still do not want to function
Darvocet barely cuts the pain but I can function better
So what do you do to cope with the pain????????? Meditation is so impossible, my mind is spinning
Also - I am curious. How has ra effected you financially?
I have gone from a woman who always had money in my pocket and the bank, I could enjoy a hobby of antiques and going out to nice places to eat. The bills were always paid but did I save for possible disability? Didn't even consider it. Why should I? I was so capable. I enjoyed my work. I was never in a hurry to retire. I got raises on a regular basis.
NOW - I am pushing to buy a house so we have something to show for all of the years I worked. I believe houses are a safe investment. We figured out that our housepayment will not be more than we have been paying for both Brett's and my place. Problem is, my income just stopped. It is easy not to spend on "stuff" as I do not go anywhere BUT just a health club membership for my water therapy may be more than we can afford. I don't even know if we will be able to afford cable or internet. All of this because of RA.
So how do I deal with my pain and worry? Mostly I am just not very good at it. I come here and dump. Somehow that makes me feel better. I need people to understand because the longer I am sick - the more my family seems to be sick of it
So how has ra effected your life? I would be interested in some of your before and afters. It is a lot to digest in less than two years.
Roxy,
I understand the financial downturn. I too, was spending because I worked and we were able to pay as we go and was not in debt. Now, not working I find I am much more careful. Just redesigned our cable and telephone accounts too.
But thought I might suggest for you, since you like to go to the gym/pool, the hospital near us has a fitness center, pool, and therapy pool (one big hot tub !) that is really nice. The pool is heated warmer than public pools and they help out with all kinds of disability issues. But what I was going to say is, you might look into the hospitals near your new future home and see if they have a pool/fitness center offered. The hospital near us will give you your fitness memembership for free if you volunteer a certain number of hours a week (4hrs I think) Anyway that might be an option for you to get your fitness/pool without having to spend the money somewhere else?
Ouchy, I have thought of that. I thought maybe I can barter so many hours at a fitness club for membership as I cannot work waiting for my disability. I would like to work a few hours a week. I so miss being productive. Thanks for the suggestion. Roxy, it is very difficult to adjust to a disease like RA, but I have never seen anyone with so many drastic changes in their life in such a short time. It is mind boggling and I don't know how you cope with it all. If you have insurance to cover seeing a therapist, I would do it in a heartbeat. An illness like RA is really a family affair and a good therapist could weed out the do's & don'ts and perhaps even help with your guilt feeling. I think it would be helpful to all of you and would make a true believer to the rest of the family that RA is a serious disease and that they have to take care of you when you need it. After you receive your disability, you can get free counseling anyway. Go for it Roxy!
Roxy, you said it! Like so many, RA has turned my life around. Loss of concentration, lazy, fearful and so on. Being an old man my problems are not as severe as you young ones with families, mortages etc. I have the pain and the frustration of daily living but because of my age there will be an end to it in a comparatively short time. For example, a fatal heart attack is a sure-fire cure for RA!!!
Meanwhile I've established a routine which helps a lot. I take Arava and folic acid every morning and MTX on Saturdays. After experimenting with pain killers I now take one Tramadol and two paracedemol at 9.00 a.m. and 9.00 p.m. This gives quite a few good hours during the day with lowered pain levels and a reasonable nights sleep.
Some mornings I wake feeling really great but it only lasts a minute before the pain kicks in again but that minute I treasure. As with all of us, some days are better than others but, oh, I'm fed up with the continual, unrelenting difficulty of everything I do. And I've only had it for 8 months.
I'd love to be able to read more than a few pages of a book or remember my kid's birthdays. Hang in there, if you will, so will I.
N & T - You know, that is on my list of things to do once we move. I want to pay a person to dump all my fears, doubts and guilt on.
Dessy, I will hang in there. I am blessed as I do have a family that I love and I enjoy. I think this is the hard part I pray. I hope eventually we will all adjust. I wish I had come up with a med regime that works for me. I try to take as little pain medication as I can so I don't burn the house down
I hope you have a family Dessy. They are so worth sticking around for.
How has RA changed my life? I struggle to work half time instead of full time. Just the first two weeks of my new job have put such stress on my hands that I'm getting an Xray on Monday and probable splints and cortisone injection. I have difficulty hearing and seeing . Cataracts make it difficult for me to focus enough to do the art work I love and I have problems with spacial relationships that make night vision problematic. I can't keep up with my family on a walk. If I overdo it, the legs give out completely. The fatigue I think is the worst part. I just don't have the energy to do much of anything but just get through the day. I hear you Roxy. The depression is part of the whole RA scenerio. I think we h ave to spend a lot of time and precious energy just maintaining our bodies and keeping our mental status intact. You are not alone.Roxy,
I get exhausted just reading your posts - You have more on your plate than any non-ra person I know. I can't imagine how energetic you were before ra! There is nothing I like more than writing or playing guitar. I don't have any pipedream of writing the next big novel, and writing the next big hit, I just like the ability to find total enjoyment within myself. Nobody around. My wife just smiles and gives me all the breathing room I need. There are times when my hands don't want me to play guitar, so I just sing scales at the piano. Its mesmorizing (singing on key is highly overated!). I guess my rambling comment is that I love spending time with family, but I dearly love a little quiet time all to myself. Are you getting enough empty space with all you have going?
I enjoy reading your posts. You seem to have a passion for life that ra has not been able to dampen. I know all will go well.
Hi Roxy:
When I read how you felt because of your RA it reminded me of the feelings I also have as I go through my day with this disease. Six years ago we moved to Calgary, Alberta and the day of our move I started with carpel tunnel. Things advanced and I can say that due to my RA, my husband quit his new job and we moved back to Ontario, Canada within two years. I did enjoy driving through the beautiful Rocky Mountains but I don't remember too much since my new RA made me so very sleepy, my hubby kept waking me up and saying look up, look up at the beautiful mountains. I could only sleep.
Early on I used to lay on the couch....but now I sit in a chair that reclines because I could never get up off of the couch...I too feel embarrased that I'm always sitting or sleeping in my chair. Last night I fell asleep in the chair with my laptop on my lap and my neck in such a bad position that I cannot turn my head to the right all day today. Sometimes my pain meds are too strong and they knock me out-- I can fall asleep and the next thing I know--two or three hours have gone by. The worst thing is my pain always is at its highest when I wake up and so if only three hours have gone by, I can't take my next dose of pain meds yet.
Finally when I am able to take my next dose, I have to wait until a whole hour goes by to feel its effect. An hour in pain isn't nice. I do have something for fast release--my doctor prescribes 100 percocet to last me a month but I seem to use them up in the first three weeks and so my last week is not nice.
I want off of my pain meds because I sometimes feel like they are controlling my life. Has anyone ever felt anxious that there won't be any pain meds available anywhere and now that I require a high dose I will have to go through withdrawal like crazy? The thought of that makes me want off of them and modivated me to (dispite my fear of the possible side effects) I'm willing to try Humira, I am willing to give it a go if it means I can possibly get off of my pain meds. Dropping prednisone would be a double bonus.
Mainly what keeps me going is prayer and my faith that one day we will ALL be without pain. Wasn't pain & death the punishment for Adam & Eve for disobeying? They passed this on to us but the time will come when "no resident will say 'I am sick' and "mourning, outcry, pain and even death will be no more...the former things have passed away". For anyone who knows their bible, these words are what keep us going!
In the meantime we have to live with RA. My mom had RA and because of it she had a bad fall and lost a lot of blood while at home and died. She was only 56--that was 15 years ago and I didn't have RA and my two boys were 2 and 4. Back then there weren't too many meds that could help you so I am greatful that things have advanced that way.
My RA has not been good for us financially and my very, very, part time job has come to an end this past week because I just couldn't manage.
My body is totally falling apart. I have a lot of rheumatoid nodules. They don't hurt unless you bump them. The ones on my hands hurt when I grab things and the ones on my feet make it feel like I have rocks in my shoes. I am sure I have one on my tail bone and so it really hurts when I sit-- but isn't sitting what I do best. I am sure I have a big one there! Oh ya, I even have some on my ears from holding the telephone to my ear. My husband says he always knows if I've been talking too much on the phone. It seems they appear wherever I apply pressure. My feet have changed so much because of the nodules that I used to take a shoe size 6.5 and now it's an 8 extra wide.
With RA I seem to only start tasks but I can never finish them. My house is full of half done jobs and I hate walking past these half done jobs later in the day or the next day or the next. Like my vacuum cleaner has been here in the living room for at least four days. I just have to finish vacuuming one more room and then I'll put it away. It looks like its been sitting so long that the room that I did do needs to be done again anyhow.
My RA doesn't allow me to get up to make breakfast or get up with my boys before school. However, I do love to get that kiss goodbye each morning when they leave. RA has taught my boys to do things for me and they seem to think they need to protect me. I'm not complaining. Hubby does the laundry now and appreciates what I did for the first 18 yrs. maybe he will do the next 18 and some.
Overall, RA definately HAS changed my life. However, I've learned a lot from it and one of the best parts is that I've found friends who share the same pain.
Caroline
I've always been concerned about the pain meds, but they are better than curling up on the couch and groaning your way through the day. I usually take ultram/tramadol at work, but when I get home its a vicodin and a quick nap. Even though the pain meds are supposed to make me groggy, they actually give me energy by taking away the pain. I thing much of the tiredness I feel is related to spending so much of the day with chronic pain. It just plain wears me out. I'll take the chance of dependancy over chronic pain.Everything I've read indicates that if you are using he pain meds for chronic pain, the pills will do what they are designed to do and you shouldn't become addicted. Your body will definately develop a tolerance but you will be able to come off once you get the chronic pain under control. My rheumatologist promises me that this is what will happen so I'm holding her to it as long as I get some results from the Humira. Hopefully it will work.
This disease makes me feel so alone and alienated. Hearing your stories make me feel lucky. I don't have nodules and I am not in need of surgery (yet). I spent the first year just laying around trying to cope and then I thought I would get my old life back with Enbrel, then I have grieved that I continue to get worse, and now I am in a mode of I want to get to where I want to be, while I can. Sounds crazy but it is like a panic. This moving is so seriously distressing and hard on my health that I feel like if I don't do it now, I will never do it. It is hurtful for me to stay here. Every time I run into anyone they are so shocked at who I am now. That makes it so much harder because I have had so many adventures with so many people in this town, it is just a constant reminder of what I can't do. So I am running away from home and hopefully will make a new home. I want to be closer to my family but I do not want to be a burden to them. I have not given up hope that starting a new life, the excitement of it and without the reminders of who I was, I will learn to live a new life that will allow me to focus on other aspects of life instead of ra. Your stories make me realize that I am not in this alone and sadly, many of you have to cope with much more than I do. But pain is pain and RA is a very painful disease. Someday I hope I can get a handle on it. I do believe the stress I am under is causing much of it. You guys are great. I always feel like the wienie with this disease
Justoday- I love to sing but people complain when I sing
A quick story. I play the mandolin, and the first year of RA was very painful and I was convinced I wouldn't be able to continue playing. After about 6 months on MTX the pain in my hands improved to the point I could play well again and I joined a small orchestra in San Francisco. Last July, we played a concert at a church in Noe Valley, SF. It was a wonderful experience. The one memory that will stick with me forever is a piece we played from Madame Butterfly, Un Bel Di (A Good Day). The orchestra played with a professional, soprano opera singer. It was incredible! And the name of the song says it all. So...you never know what you will be able to do! I'm sure there will be dark days ahead but that memory will shine through.
I know what you are saying Roxy. I used to climb trees, and go berry picking, and raft down the river. Now I wonder if I can get off the floor when I play with our little girl.
I take 2 tramadol in the morning when I get up, and 2 at bedtime. Most days I take 2 at 4 pm as well. Sometimes i take a vicodin at 4 pm.
when I finally reconciled the idea of getting remicade infusions with the idea that maybe I wouldnt be pain free, taking the tramadol got easier. Most days I can walk pretty good. I can use my hands for a few minutes at a time, and I can drive father now than I could for about a year.
I made a decision years ago..pre RA that I dont do worry. worry is counter productive. it doesnt affect the end results of anything. I plan, and I take reasonable precautions, but I decided to not waste valuable psychic energy on worrying.
I have fopund if I manage my pain, I am less likeluy to be hateful and unpleasant to people, and my depression is far less severe.. So i swallow those little red ovals and do it with a smile.
I am working on the worrying thing. I have found that I am surrending to today more than ever. That may be one gift of lack of control, you learn to take things as they come. For me, it is always a challenge but I have noticed a sense of surrender inside."I dont do worry. worry is counter productive. it doesnt affect the end results of anything. I plan, and I take reasonable precautions, but I decided to not waste valuable psychic energy on worrying."
Thanks Kathy for these inspiring words! Worry is my second biggest health threat. I would be on Paxil but it makes me gain an unending amount of weight! I know what you say is true and I need to repeat it to myself several times a day!
It is so true. If I want to come up with things to worry about - I have plenty. Does it help any of the outcomes to worry - HELL NO. I plan on a good attitude today.It's a mysterious, frustrating illness that people who don't have it don't understand. It's very isolating -- you either live in the closet or dump on your friends, or worry you're dumping on your friends. The drugs take their toll on your psyche, and the disease itself packs a wallop.
I used to spend sometimes 14 hrs a day writing a novel. Typing shredded my wrists, so I have to dictate -- and I hate it! RA has interfered with my productivity. Not to mention just about everything in my life.
Just keep living and try not to feel bad about yourself for a disease that is NOT your fault. Remember how much strength this disease can give you, too, and how much wisdom.
Blessings.
~~~~~
'In our sleep, pain that cannot forget falls drop by drop upon the heart and in our own despair, against our will, comes wisdom through the awful grace of God.'"
I feel like I am trapped outside of my old life and I want back in. I had just graduated from University and had been married only 5 months when I got pregnant with my baby and got RA 8 months after I had him. It has completely destroyed my life. I live in the worst neighbourhood possible and I have no money anymore. I just to love music but I can't listen to a song without bursting into tears now. I never speak to my husband - I hate his guts - We used to do everything together and now I feel like I am in prison and he is free - I feel like I am being punished for having a child sometimes and I wanted to have more than one child but I won't for fear that it'll make the RA worse. I spend every day trying to find something that'll make it better, hoping that I'll go into remission - wondering on good days if it's going away, only to be floored again a couple of days later, I can't relax or be happy or forget this disease for 2 seconds and I resent my husband to the core that he does not understand what this has done to my life. I salute a postive attitute and I try very much to have one but I feel I am just not able to accept that I have this and I can't accept that I will be disabled etc - I just can't do it. I go out of my mind sometimes and I feel so alone - I dont want to take pain meds and snuggle up on the couch, I want to go out dancing and get drunk and get dressed up and have a laugh with my friends and eat what I want without it giving me a flare and to have the world as my oyster again - I HATE this stupid thing so much because I know that there is a reason behind what has caused it and I don't know what it is and - well, it has completely ruined my life. People say that it can only do that if you let it, well, that's who I am, I can't take the anticipation of the progression if the disease, I am frightened, I have a hideous chest infection and I can hardly bend my elbows just now and I take my son to different classes - he's two, and I'm scared for how long I'll be able to manage. I just want to go out and dance and sing and to walk for a day without this RA walking with me. I want hope and to be free, I miss being free most I guess. I am so sad sometimes because I really liked being me and I'm not me anymore. I can't listen to music or go out or anything because I feel it just upsets me and reminds me that I'm not me anymore - I feel trapped.
Flint,
I'm sorry you're going through this. I can't imagine how I'd feel if my children were still young. It's hard enough dealing with life with RA when I only have to take care of myself. The only way we can take this is one day at a time. I'm praying for you.
Thanks for praying for me - i pray for everyone too and I appreciate it very much x Flint, I am sure a lot of people can relate to your post. I feel very angry like you and I am 50. I was just a very active 50 and had many plans for my life. RA is our shadow. It is so hard to get away from. My heart goes out to you. Don't give up on remission or getting better. My ra has had ups and downs. I feel angry at my husband. In the beginning he was good but now he resents me. For the people with hubbys that support them - THANK GOD FOR THAT. This is a very lonely disease. I try not to get angry at my hubby's attitude lately because he still does a lot for me and my daughter but I would be elated if I saw him, once, just once, interested in researching the disease or reading the message board. He really doesn't want to talk about it anymore. He has even said that ra has ruined our marriage but we keep on going. Hoping to get passed all this stress and see how we feel. I had thought my hubby was so compassionate but he is even sick of it. WE ARE SO SICK OF IT, ALL OF US. But find things in life you can still enjoy, today music cheered me. Anything, we have to find things that make life worth living. You have one about knee high and what joy a two year old brings. Worth the work ! Sometime, just stop and watch him play. It will make the struggle worth it. My heart and prayers go out to you. RA SUX.I have a question about pain meds. I have been trying hard to keep the usage of vicodin to a minimum. Usually I take the ultram during the day and and night I'll take 1 5mg vicodin after work and another 1/2 pill before bed. I know that's a relatively small amount. But I've been having a realy bad week or two and I've noticed that I find myself taking 3-4 pills during a full day. I feel that it is temporary and if it stays bad I'll take a prednisone pack starting monday. But I do worrry that I've accelerated the dosage quite a bit for such a short time frame. I've been taking 5-7.5 mg steadily for nearly two years now. For those who use the stronger pain meds, how long did it take for you to become for tolerant of the dosage. What is a high dosage after 1 year or 5 years or even 10 years. I know the answers will vary, but I'm interested in ganing perspective. I'm the only calibration point I know. Also, it does seem to help to use ultram/tramodol with a 1/2 vicadin. The two seem to work well together and I hope that this will lower my need to use the opiate pain meds until later in my life (I'm 49). Lots of questions, sorry.Justoday - I vary my pain meds. It seems to help to not get a tolerance to them. I take percocet (very addicting) twice a day and darvocett in between. I used to take up to 6 or 7 darvocett a day. They were losing their effectiveness. I find that using darvocett when I need to function well and percocet after I have functionedJustoday, it is very hard for one person to gauge the pain relief needed by another person. Some people are very tolerant to pain medications, some are not and yes, over time you can become more tolerant to your pain meds. I guess the first thing you need to do is evaluate what is causing the pain. If it is overall pain, then the RA is not being controlled sufficiently or maybe you need some extra rest. If it is a particular joint, get films and an evaluation. Staying on top of these things, helps reduce pain in the first place and avoids being sicker than you need to be. Then, address the pain with your doctor and find the right solution for you. It will not be the same as another persons.
How has RA changed my life? I certainly can't do things that I used to. I find that frustrating. It is isolating because I can't make plans with friends and keep them. I can't really get out and meet new friends. And, I can no longer work. I really miss that.
But what RA has given me is more understanding of myself. It's pointed out clearly who my true friends are and which family members I can and cannot count on. RA is a fact of life. We didn't deserve it. We didn't do anything wrong to get it. It is something that happened to us. And, we do not need to punish ourselves with feelings of guilt for having it and having to adjust our lives to it.
If you lost a limb, do you think you should feel guilty about not being able to use it any more? No, of course not. Sometimes, it would be easier to make others understand if you just told them you had cancer. They get this terrible disease and can muster compassion for people that have it. Most people do not know the first thing about RA and it is such a complicated disease, it is difficult to explain.
Unfortunately, even the closest friends that I have outside of those on the boards, do not get that this illness has a great impact. Sometimes, I can't walk. Sometimes, I can. Many, many things are that way. Some friends think I should find any kind of job no matter how much pain I am in. They don't understand and it puts a wedge between us because I need that understanding. I demand it from people in my life or they do not get to be part of my life.
I am a human being who happens to be ill. I am not going to feel bad that I have to rest and take care of myself every day. I am going to quit when I get tired (I have a hard time doing this). But I am going to do it. My house can stay dirty (yes, the vacummn cleaner can sit in the same place for a month if I cannot move it myself). That is life.
It is hard to adjust. In the beginning, it is so frightening and you feel so out of control. And, it takes so long to find out what is wrong and then get the right treatments. It's a battle.
Then, you have to convince those you care about what this disease is about and pray that they can accept it, help you, and not desert you. They may or may not be up to the challenge. But that is on them, not you. If there was more awareness of how deeply this illness can affect one's life, may be it wouldn't be so hard. But this illness can cripple you and it can kill you. That is also a fact.
Financially, it has been devastating for me as well. I have worked hard and seen all my money go to the doctor bills. Now, I have to go on disability and know that unless something improves radically, that I will be forced to living in a state of poverty and always asking others for help. This is really hard on me. I love my independence and I don't want to ask for help. Yet, I must accept my situation, and do it.
RA has given me things as well as take things away. I am more aware that my time spent on any endeavor is precious. I cannot afford to waste time in unhealthy relationships. I can't afford to work at a job I hate any more and that physically was destroying me. RA has brought my life into focus. I know what I want more. I've had to give up somethings for now. I hope I will be able to do them in the future.
But I treasure certain things, like being able to watch a rain storm now instead of being locked inside a cubicle at work. I am physically isolated from people. But through the phone, email and the boards, I am constantly connecting to people who are extremely important to me. My relationships with people are much deeper because I choose quality people to be with. I make the most of the time I have with my children.
I get angry just like anyone else and depressed. But then a new day starts and I decide I want to tackle a new challenge. Okay, maybe my challenges used to be more grand. So what if that sink of dishes still is pretty formidable. The walk to get to the swimming pool is still a huge chasm for me to cross. It is a challenge to conquer and so I go after it.
Not enough people stop and look at their lives. RA forces you to do that. It's like running into a wall that just won't budge. So, you learn to live with the wall. Put some pictues up. Move in some comfortable furniture. Sit a spell with a good and loving soul.
Deanna, Your words are going to help so many people with the guilt. You tell it like it is. We didn't ask for this disease. People don't understand it and yes - we have to find new things to enrich our lives. Isn't it ridiculous that we get sick and we feel guilty. Little accomplishments are BIG accomplishments now. I was proud last night when I packed two boxes.I have to convince myself that it's OK to stop "doing" and for Pete's sake, stop feeling bad because I can't do things like I used to. I want to put my energy into getting well, or at least pain free. I've got to stop caring what other people think and for once, think about me. We women have a hard time with that.
Roxy, right back at you girl!
miles2go, my mom has been telling me stories of my grandmother who had severe osteoporis towards the end of her life. She was one tough lady, very self-sacrificing and with very few complaints. But she finally wouldn't go to the family reunions that she loved because it just hurt her too much.
We all have to accept limitations. Then we have to figure out how we get around them.
Flint, I am so sorry that you feel like that. I am young too, 27 and just got marry 4 months ago, I have RA since I am 22 and my worst crisis was last Chritsmas, I felf so guilty and also I hated the world because I couldn't be a normal person, I was so lucky of having a really caring boyfriend, now my husband, that took care of me all the time. Our families really support us, I personally don't know what I will do without him but still sometimes I feel like he is going to get fed up and stop loving me.
RA is hard, very hard but you have to understand that your life has changed this is your new life and the sooner you realise that the the sooner you will be able to enjoy life.
I couldn't go dancing or do things like that but now I am on medication and last saturday I wen't dancing until late something I thought it will never happen but I am actually having a normal like, of courseit cannot be the same but it can be good too. It really worry me for post but you cannot carry on stuck in the past, I know it is difficul and sometimes people do not understand and it make it even harder.
You need to talk to a doctor try to find groups to support you as you dont' have it at home and you need to start trying to love life again for you and your son. I don't really know what else to say but you really need support.
Just think you are not alone.
Good luck, Encarni.
flint - praying is just relaxing your mind and asking for miracle.
You have a "nasty guy" living in your body. How it comes about we do not know.
What I do know possitively is to build up the healthy body energy to gradually having bouts with the inside "bad guy".
Many have one and only logical selection without choice - drugs to bombard the "bad guy". This "bad guy" is dynamic too. It may be under control for short period of time under certain drug/s but it learns to resist and becomes more aggressive each time. On the other hand the healthy part of you getting weaker and weaker.
How to fight the "bad guy" in the body when the real you is weakening gradually?
So do your homeworks and start to learn to live healthily with herbs and natural foods to interact with the "bad guy". To lament, to fear, to vent anger - all these are of no use but inflicting more harm.
I understand the "bad guy" and completely in control no matter how evasive this "bad guy" changes its strategies for the past 15 years. The wonderful part of my life is I DO NOT HAVE TO DEPEND ON DRUGS TO FIGHT THE "BAD GUY" EFFECTIVELY AND CALM ITS AGGRESSIVE BEHAVIOURS TO NO REAL THREAT!!!
Well, I came across this topic and figured I'd put my two cents in. Pain is always a big issue with RA and other forms of arthritis. As far as meds go, everyone reacts and responds differently, and after a period of time, the meds you take can stop working so well and you have to make some changes. Just have to keep your doctor well informed about how you are feeling. As far as my pain goes, I have been lucky the past few years. Pain isn't a constant everyday thing like it was when I was a child. I still have bad days, and there is always at least some dull ache or pain somwhere in my body. These days, it is actually a callus/corn thing on the big toe of my left foot. If I spend too much time on my feet, it really gets to hurting. I have been using those callus remover pads, but can never seem to get rid of it completely. It has been something that has bothered me off and on for a few years now.
I do take medication of course. Plaquenil, etodalac, and darvocette as needed for pain. Usually just take one of the darvocettes in the morning and that usually is enough unless I am having a bad day. But this is just the latest batch of meds. Throughout my life I have been on all kinds of meds, from prednisone and methotrexate to actually having gold shots. However, as far as I can remember, I have pretty much just stuck with the darvocette for pain, unless I have a surgery. Then my doctor will give me something stronger, usually vicodin. And fortunately, after a lifetime of taking drugs, I have become used to them and don't really have ANY bad side affects, at least none that I can feel. I do have to have my blood checked regularly to make sure my liver is not being affected.
Like I said before, my pain is not a big issue these days, but there was a time when I was in very severe and almost constant pain everyday. I was diagnosed with JRA as an infant, but went into remission at about 3 years old. But it came back when I was about 8. The next few years of my life were the worst as far as pain went. I would wake up in the middle of the night screaming I hurt so bad. My mom or dad would have to just sit with me in bed, give me some meds, and just kind of hold me and comfort me until I basically cried myself back to sleep. As the years went by though, I found ways to cope with the pain. Other than meds, my biggest way to cope was escapism. I would just try and take my mind off of it. I watched a lot of tv (maybe too much, lol) and developed what would become a life-long passion for movies (especially horror, the bloodier the better. Guess I figured that no matter how bad I hurt, at least it wasn't as bad as being carved up by a maniac with a chainsaw, lol). I also read a lot and like to draw a lot too. However, it was my intense passion for music that helped me the most. I had been into music since birth, maybe before (my mom went to an REO Speedwagon concert when she was like 8 or 9 months pregnant with me,
As far as how my condition has changed my life, I only had about 5 years of remission, and that ended more than 20 years ago. So I have adapted. I don't really even know any other way of life. This is who I am now and I have accepted that. I have accepted the fact that I may never be a pro football player, or a mountain climber, or a fireman, or stuntman, but I am ok with that because I am ok with me. Chances are, I may have ended up being a musician/movie buff no matter what my physical condition turned out to be (although, I know I would be a better musician if my hands weren't so damaged). If I woke up all of the sudden one morning, and all my pain and joint damage was gone, and I was "normal" all of the sudden. THEN I wouldn;t know what to do or how to adjust.
"That which does not kill me only makes me stronger."
I dump on my web friends when I can't take it any more.Liquid, You have an amazing ability to analyze your feelings and strategize how to cope with this nasty disease. I applaud anyone who had JRA and is still fighting this disease. It is so exhausting. You are one tough cookie.
ROCK ON!
CINDEE
Roxy, thanks for the comment. And yeah, most of the time I wear headphones when I listen to my music cause I know it's not for everybody.
CinDee, nice to meet you, fellow headbanger. I like to listen to something to get me going in the morning. I don't drink coffee, but a soda and some good music does a fine job of waking me up. The music has got to be fast. loud, and a lot of energy though (usually metal or punk rock). I like all kinds of music though, but stuff like Bob Dylan, Pink Floyd, Simon & Garfunkle, etc. just doesn't cut it if I need to get waken up. I like those artists, but they would most likely just make me want to go back to bed. Gotta start my day with a bang!
The time of my Life without the RA & Fibromyalgia: ; ;
My daily energy levels were Moderate to High, Pain was NOT a Factor, and pretty much I didn't have many worries. Most events involved physical activities, friends, traveling, entertaining, and many restful, solid nights sleep!!!!!!!
Now we examine my life with RA & Fibromyalgia and the daily episodes of the long lasting effects....
Sudden awareness of my Pain tolerance, the duration of Pain, the Inability to overcome it's pressence, and the lack of understanding to cope with these disease processes.
The constant uncertainties; What each day may bring and what the treatments might include, both financially and physically as well as the mental and emotional expense I face. We dream of the days before and wonder what happen to that Person, where did she go, will she come back??????????????????
The Doctors listen, examine, and explain different steps of the Disease process, they continually try different meds. , different Levels of Treatment and offer some Hope....
But the reality of it all, rests within each of us and our resolve to DEAL With, Overcome, Cope, and FACE these Diseases with Courage, Hope and Faith.
I can't honestly say that I don't have Bad days where I am angry, frustrated, miserable, in pain, in denial of my limitations, and days where I could just throw in the towel and give up !!!!!!!!!!!!
As well as the days it's not so BAD and I feel like getting up and running, walking, throwing the ball around, swimming, working, reading, going shopping, or just SMILING...
To sum it all up....... My wife accepts me and my disease, my friends and co-workers as well, on most days....LOL.... And I believe the Doctors are trying their best to achieve results with the variables I present to them each visit.
If I could go back to the way it was before, I would.
I now have gone out of work on Short Term Disability, I have limited all of my daily activities, increased my meds. and am trying to focus on the Positive and not the negative. Financially we are facing my reduced income, Mentally I am facing the lack of Work and it's rewards for my Self Image and daily accomplishments, Inter-action with others and feelings of worthiness and contribution in a sense.
I have RA Nodules, I have Swollen Limps, Stiffness in my Neck and Back, Pain in Legs , Knees and Hands, my Wrists don't have much range of motion left in them, and my fingers don't work much anymore either. My wife dresses me, drives me, Some days I can't even get uprighted by myself.....
But I will hang in there and try my best with what I have. If she is willing , so am I... My new limitations are devastating, but also open doors to new activities that I can do, and so I push ahead and re-discover . It isn't a matter if I want to, or like the changes, I see where I have no choice but to move ahead in different directions. Life is different, but still has meaning.
I feel we offer each other something here at this forum, and I have shared and taken advise from you all. Daily Prayer, Faith and Hope will help us each, and the Positive attitude will help us accomplish another day, hour, minute, or week......
I am currently on Humira, (Every 7 DAYS) going to start Remicade next week!!!!!!!!!!!!!!!
I take Methotrexate, Folic Acid, Zooloft, Premaren, Flexirile, Skelaxtin, Cybamlta, Vicodain, Predinsone, Amitripilyn, Extra Strength Tylenol for the headaches from these Meds...Allegra-D
Too many to remember...lol
Sorry for the long Post, but when I can type, it is nice to get it out of my head....
Take care of yourselves and each other..
Roxy,
Just when I though there was no hope you made me feel not so alone. I have been desperatly trying to not get down but really haven't been doing a very good job of it lately. My pain is not nearly as severe as some of you. However the fatigue is relentless, I was so active before this damn thing. Now it is a struggle to move, let alone accomplish anything. My husband and children try to understand but I know in their hearts and head they think I am over-reacting or just being dramatic. That then in turn makes me angry because I am not. Or at least I don't think I am then the self doubt sets in. I am a stay at home mom so at least so far financially it hasn't been a stretch for us. Thank God my husband has good insurance. I am however going to college to try and get my realtors license and had just started when I got diagnosed. So far I have been taking courses online which is the only way I have actually finished anything. But starting next month I will have to go 2 days a week into town at the jr. college. lord only knows how I am going to manage that. I have only had this now for about 3 months and it has already drastically changed my life as well as my children and my husbands. Those of you with small children or even jobs I am in awe of how you manage. I can not begin to imagine how I would cope with either and have this disease. Roxy again thank you for this conversation it has helped me feel not nearly alone to know that those of you who have been battling this for awhile now can still be angry.
I think we all need to hear other's stories so we do not feel so alone. No one understands really except US. We need understanding. I need understanding. That is why these boards are so important. I am in pain this morning, trying to get the energy to go get my meds. Now that is ridiculous. I just hate starting my day drugged but the only way I can feel productive. Since we are moving I have been worried about how we will leave my house. Yesterday I went in and wiped out about 12 shelves in the kitchen that we had packed. That actually made me feel proud of myself. That is sad how little my accomplishments have become. I remember when I would get on a roll and spend the whole day housecleaning and actually like it. Now my big job is to walk the dogs today. Brett is on strike.
I have been looking for work when we move. I can find many jobs I am qualified for but can I do it. Now that is going to be a challenge !!!!!
Don't get too depressed, Katie. At least you two had that one good, pain-free day. And wouldn't stress over the whole insurance thing right now. Worry about that when February comes around and deal with it then. you know, cross that bridge when you come to it. Hope you and your "hunny" get to feeling better soon. I'm sure you will have more good days together. So just hang in there.
Take care,
Jesse
Thanks. :) It frustrating because all of our friends are well....I go to work, and listen to Christine - who's old enough to be my mother, mind you- talk about how she and her husband when out this weekend, and the kids had this game, and they went camping, and aaalll the normal things they do...and I never have any stories because all we do is sit around. And it's not just the pain of it, its partially the financial strain. He can only work 2 days a week, and sometimes ends up in the hospital, and doesn't get to work. :/ And theres just nothing free or cheap to do in this god-forsaken town. I'm not trying to think about the insurance too much. I'm hanging in there all I can!!Roxy I'm really new here but have read a couple of your posts. I'm praying for you to have peace on your feet, no fear in your heart, and a continuing overcoming attitude.
Matthew 14:27 Just for you.....
Be Blessed
Thanks Rocxy, I am feeling more peace than I have in months. I am just trusting. I really believe I am not in control and whatever happens, it will be the right thing.