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I talk with my husband daily about how I am doing. Especially if he is home on the weekends. It gives him a good sense of what we can do together during the week before he leaves for work (i.e. is he running errands alone or am I tagging along lol) or what we can do as a family on the weekends. It lets him know whether or not we have to modify any plans or not. It is ok to feel icky and tell your spouse or SO about it. It isn't whining. I tend to infuse some humor into my is it a good or bad RA day info to him. The other day I told him that I must be related somehow to the sta-puft marshmellow man cuz my hands were all sta-puft'd like a marshmellow. He just laughed and said well then take it easy today and don't overdo. Yeah right lol. And the Good Housecleaning Fairy comes and picks up his dirty socks and uniforms off of the bedroom floor lol.
Sometimes all they can say is "Oh" because they simply don't know what else to say. Men especially are like that because they can't "fix" us and just don't know what to do or say for sometimes. Sometimes all my husband says to me is "I'm sorry lovie" and goes on about his business.
its very hard for others to know how we feel. especially our partners. my hubby gets really frustrated not being able to help. and i must admit when he complains about pain i dont give the sympathy needed as his pain seems insignificant to mine. a few pulled muscles etc go away after a while . our chronic pain is for life. but understanding others pain somehow makes ours not quite so bad.
So you'd rather be miserable than to take medications. You've made your choice so sorry you're not going to get a lot of sympathy from me. You said there was nothing you can do to help you feel better is a load of crap you have just chosen not to take advantage of them.
Take the medications as precribed, if they don't work well enough get different ones, get off the couch and into a pool or onto a exercise bike and get some exercise-bursitis can be prevented with stronger hip, back and leg muscles. Get counseling if you need it to figure out why you are choosing to live in pain rather than to properly treat your RA.
RA sucks but I know way too many people who are fighting it with wevery ounce of their being to have much patience with someone who has given up. I do pity you for giving up but I save my sympathy for people who still figh the beast
Dear Honey, I don't always tell everything to my husband. He's been taking care of me for the last 3-1/2 months because of a heart operation, so he's so glad to see me better than I was that I try to keep it to a minimum. Yesterday in the car I was talking about my increase in Remicade and decrease in prednisone (my husband really wants me off that stuff, scary stuff), but before I started to explain I said, "Do you want to hear about this?", he said yes ,so I continued.
I've found this forum of great help in being able to vent, learn new things, share our fears and anxieties, or pain is like no other!!, so I hope you will continue to touch bases with us and let us know how your hip is doing. This disease is, for sure, annoying and adding 'the hip thing' jsut pushes you over the brink.
lol, sarah
Buckeye- i like the way you view this. it is courageous to battle this everyday. sometimes we need tough love to kick us in the butt! good for you. Honey, we want you to feel better. And if taking the meds helps why wouldnt you? your waisting your joints,your mind,your spirit by not taking control of your life.
kel
I do take my drugs. Just not strong painkillers. I have a low tolerance for meds in my system. I have two young kids I have to drive around every day and I can't risk being impaired due to painkillers. I have a pool, my husband is having a hot tub put in our backyard. I don't want your pity, sympathy or anything else. I guess I mistakenly thought I could vent w/o being attacked or judged, then I remembered which website this is. My mistake. Sayonara! Have a great day buckeyeDear Honey, Well said. SarahI understand where you are coming from, Honey. Even though I did not read your first post before it was deleted, but I do understand about not wanting to take the painpills. I use to be seen on here and another board as "putting people down" for taking pain meds, but it was just the opposite. I say if you can take them and have no little kid depending on you for their daily living then go for it. But I have kids that depend on me and are not old enough to do things for themselves, so I cannot be taking something I know makes me go to sleep or dooze off but not in a light dooze but a deep dooze.
I already have a hard enough time staying awake and wanting to get up without pain meds in me.
I would rather be in pain to tend to my kids like I need to, than to be in bed and them getting hurt because mommy was asleep and could not be work up because she took pain meds to get rid of her pain.
I take IBU for my pain, it does take the edge off to a certain degree and makes it tolerable. But there are days I wish I had strong pain meds, but I do not. My fault of course, I do not ask for them and do not take them when offered, because I will take them if I have them.
You do what is right for you and your family, Honey. No one should judge anyone on how they want to deal with their pain, even if we do not want to take pain meds that are suppose to take away the pain.
I think people's medical treatment decisions should be respected, even ifI tend to be very blunt, I will totally admit that. I also will confess to having very little patience with people who are feeling sorry for themselves without any proactive steps to change their situation. Its not that I don't have empathy or sympathy for people's situations cause I do, but sometimes support can't be in the form of "oh you poor thing" even if that is what they say or imply they are looking for. Sympathy is for things that are out of your control
I don't give a damm how people choose to treat their RA. That is a personal choice but if you choose not to take your medications as prescribed, which is what she implied in her original post, or choose not to treat the disease (not can't treat the disease) don't then turn around and complain about the results. Choices have consequnces and I assume that everyone is aware of the potential results from their decisions. Honey said she did not like to take drugs and she only took her relafen once a day if needed. She did not talk about "heavy duty" pain meds. She referred to her NSAID. We can only respond to what is written
One thing I will never be quiet about ,and this is the statement that truley got to me, is anyone saying "nothing can be done" Until you have tried/eliminated every medication, weight loss, exercise, surgery; until you have exhausted every possible thing don't ever say nothing can be done. That is a defeatest self pitying statement. I have worked too bloody hard and have too many friends who have worked too hard to fight RA to have any patience with anyone who uses a statement like that. When you use a statement like that you have given up.
I am not going to apologize for what I said because frankly I meant every word based on what I read. If I misinterperted then I am sorry for that
Everyone at one time or another feels like giving up and mostly post their "given up" as a way to ask for encouragement to help them not think there is nothing that can be done. I know when I am feeling like my meds are not helping me and I am in pain, I tend to lose hope and give my defeatous attitude, but then I have people I talk to on IM like Liz, Katie, Deanna, Shannon, Rando and a couple of others I know I am forgetting and they help me thru my "JRA has defeated me" attitude.
I admit I did not read the first post that has now been deleted, and do not know exactly what she said, but I have been at the point that I have stopped taking my NSAIDs because I felt they were not doing me any good, which they were actually doing more harm than good for me.
""Take the medications as precribed, if they don't work well enough get different ones, get off the couch and into a pool or onto a exercise bike and get some exercise-bursitis can be prevented with stronger hip, back and leg muscles. Get counseling if you need it to figure out why you are choosing to live in pain rather than to properly treat your RA.(not can't treat the disease) don't then turn around and complain about the results""
I tend to agree with this post. I have battled this disease since childhood when there were not drugs, so I suffered. No treatment in sight, so I suffered, missed school and my teachers were convinced by my parents that I was faking it. It was not a happy time for me.
THen I had to have several surgeries due to cysts and malformations, my surgeons got together and decided to send me to a rheumatologist. I was finally dx. There were treatments for this disease finally. I managed to raise 2 children with the medications and the disease. DId I get frustrated? Yes. DId I get upset and feel sorry for myself. Yes. Did I have a mesage board to go to ? No. Was my husband supportive? No. Was my family supportive, yes, my parents paid for most of the procedures and medicine. DId my kids grow up with a sick mom? yes. When I finally found a man that I fell in love with after the divorce, did he understand and was helpful? Initially, but that all caved in as well.
DO I ever feel as though I cannot go on? Yes, many times, used to be a continual thing. My kids jerk me in line really fast, I want to see my grandchildren born and grow up. Do I become frustrated when all but 1 drug works? No. Because 1 drug worked, even though it took over 10 years of pure hell fighting this disease through failed drugs, 1 drug finally worked. I just could not afford it after awhile and my parents could no longer help me because they had health issues. My blood work is ok, I took lots of pain meds during college and while raising my children and I made certain they were involved in everything they wanted to be involved in, and yes, sometimes it was really difficult for mommy to get them there. But I did it anyway.
You have to fight this disease to live. I am not much of a fighter and I hate confrontation, I mean I truly hate confrontation. But when I love something I do so with all my heart, and I love my kids enough to take the meds to keep me strong and semi healthy to continue on. My life is not that great, believe me, but the alternative is no drug, no pain meds and a shorter less favorable lifestyle and my kids and future grandkids deserve more than that. Even if nobody else thinks so. Can't, is not a possibility for me, not until you try everything. I have learned how to do all sorts of things that I thought I Couldn't, but I learned. THis probably comes from the fact that my mom is a """CAN'T"" person,she always claims that she "can't" do something even the simple tasks. TO me it is called "lazy" and I refuse to lower myself to that type of negative and uneducated thinking.
Pain meds after taken for a bit tend to lose the ability to make some of us so drowsy. I take mine daily with food and no longer have a lot of drowsiness from them like at first but they allow me to function. By evening I am getting drowsy which is ok. There are some really light pain meds to start out with.
I did take my Lortab10s and they made me psycho. They were the ones I took after my elbow surgery and hubby got them filled without asking me first. Like I said if I have them I will take them.
Honey, i thought you were talking about not taking your meds for your arthritis, (Bilogics,dmards) I did not know it was pain meds because you didnt like the side effects. i did not try to demean you. i was just saying that buckeye brought A not so accepting post does not mean he is NOT right. I mean that for me, because i do pitty myself,maybe it is because i am still newly diagnosed.And i needed to hear that. Vent all you like,thats what this board is for! and we all have bad days,if we cant talk about our fears,complain about this sh*tty disease,and how we struggle everyday.Than we lose support and hope. And this is a support group! Hope your feeling better soon.
kel
Dear folks, I think all of us write here whenever we have the time and want to, but we don't always know what our mood will be. I think Honey expressed herself that minute! , that day when she felt really fed up with it all! Geeze I had a million of those days when I was recovering from the heart surgery and thought I'd been through hell Enough, and didn't KNOW I'd be butting heads with a very BIG RA FLARE!, so you just don't know and this is a great place to unwind, to let your hair down and say how you feel.
sarah
Oh my goodness! I was having a bad day, weekend, week, whatever you want to say. I went to the dr. last week and when he manipulated my hip I almost hit the ceiling. I wanted to vent. I said I was "sitting on the couch staring at the floor', yes that's true, but it's not like that all the time every single day. I also said i don't like to take meds other than my relafen once a day - yes once a day is all it's recommended - but if you BUCKEYE would have bothered to look at the bottom of my post where my signature line is before you fired off your little fingers typing a nasty response you'd see that I am also on Enbrel and Arava. Life is too short to deal with people like you who say you are "Blunt" as an excuse for being RUDE! And for the record, I believe the entire sentence for "nothing can be done' was in actuality more like "I don't want to bother telling my husband that I'm in pain because he can't really do anything about it". He has bought me a treadmill, bought a hot tub, done anything he can but the fact is, if it works it works, if it doesn't it doesn't! No weight loss needed here, Buckeye, I'm 5'8 and 138 lbs. I don't think I wanted pity or as you put it "oh poor you" or whatever you wrote but I just wanted to VENT! Have you ever VENTED BUCKEYE!? Nice night BUCKEYE! Sometimes you just need to unload it!! And times that like are also one of the things these boards are for, isn't it??? Sometimes you REALLY just need to hear that one or two "OOH - you poor soul - that must be awful for you" and that is usually followed up with some positive affirmations and warm fuzzies. And what's even better ? When people come back later and ask how you're doin'. That's emotional support - non judgemental - thank goodness that most of the people on this board are like that. Golly, I'm yet to send out an SOSThere are times I come here and let loose with some venting too. We all need to. Granted that there are times that we really need to be given a good what for, there are ways to do it and ways not to do it. Just ask Katie because she gets the what for from me lots lol. But it is done in a gentle way that still gets the message across with care and compassion.
I am feeling helpless and a little hopeless lately but I have a ton on my plate right now. Some days I do good not be an emotional wreck. I got a what for from some very special friends of mine ( you all know who you are lol) that has helped to me to get back on track and get things in order again. But they were kind and loving with me at the same time being firm with me.
Honey - I didnt get to see your original post and I have posted this before but for your benefit -I was diagnosed 10 yrs ago with severe RA - tried celebrex, ibuprofen etc for a few years until I got stomach ulcers and now takeI am new here and have had RA (JRA) all my life. I didn't see the first post either, but I thought the point of this board would be to encourage and support one another. I have a friend with fibromyalgia (sp?). Many of our symptoms are the same. I find that we talk to each other even more than our families about our aches and pains because we understand each other. To an outsider, it might sound like whining, but really it's just support. Here, we all have the same pain and struggles and sometimes it's just hard. I started taking meds at age 5. I reached a point that I just threw them all away, I was so tired of taking pills. Other times, I have been totally grateful for them. Can't we all get that? I take supplements that help. I am careful with my joints. I eat (mostly) healthy and stay in shape. Yada yada yada, but sometimes it still sucks and it's nice to have a place where eveyone gets that.
Isn't that the point or did I stumble onto the wrong site?
Gee wiz!!!I can't tell you how many times I have broken down and been like (censored) this I'm tired of this...no more shots...no more handful of pills every single flipping morning...no more doc visits...no more calls to the doc...no more spending 300 bucks a month at the pharmacy...oh just URG!!!!!
However, I really have not met anyone on this board or any other that I post at that has actually called it quits. It is oohhhhhhhhhh so frustrating at times. I will never give up. The number 1 reason I will not give up...me. Why do that to me? Why live like that? Number 2 reason not to give up...my husband and my kids and my gbaby and the gbaby on the way.
Some days we sure feel like giving up. But after a little venting and a little much needed TLC and support we know we won't.
Just a little something something to keep in mind when we see posts where people are like URG IM DONE!!! They really don't mean it.
Thanks for the support everyone. That's exactly it. I had a very bad string of days and the dr. adding one more thing to it last week was the straw that broke the camels back. I wish I could be normal again for just a day and not have this RA hanging over my head or hanging around in the background waiting and ready to knock me on my a** when I am getting too happy or too comfy. The reason I deleted my initial post was in a failed attempt to stop a potentially argumentative thread. I figured after the first attack I may have said something inappropriate somehow and I didn't want to have one of htose threads where people just get nasty on and on. That isn't helpful to anyone and I've seen those kinds of threads a lot in the last couple of months. Anyway, I was pleasantly surprised at the support I got from you all. THanks again. By the way, yesterday was so good for me I actually tackled my spring cleaning --- i know i know I probably pushed myself too far but it's almost 7am the next day and I feel OK!!!! Keep your fingers crossed!YOU GO GIRL - kind regards Janie. Read the article on Spring Cleaning Tips from the Arthritis Foundation Magazine!!!! No keeling over!!! what is keeling over? I just cannot picture what it is in my head. Sorry, bad brain day. Just dropping from exhaustion. ohhhhhhhhh.... you mean killover!!! I thought it was a movement like kneeling. I wouls slap myself upside the forehead, but cannot reach my head today Lorster - have answered your question re sleeping pills on a new thread. Hope Lunesta is not a benzodiazepine.'One thing I will never be quiet about ,and this is the statement that truley got to me, is anyone saying "nothing can be done" Until you have tried/eliminated every medication, weight loss, exercise, surgery; until you have exhausted every possible thing don't ever say nothing can be done. That is a defeatest self pitying statement. I have worked too bloody hard and have too many friends who have worked too hard to fight RA to have any patience with anyone who uses a statement like that. When you use a statement like that you have given up.'
buckeye, you're a fighter. Even you've heavy weaponries (super drugs) to bombard it can destroy the land (body) and driven out the enemy temporary. The enemy goes into hiding and comes back to mount many fieceful and more devastating attacks because the enemy is immune to all your heavy weaponries!!!!
Only the right key to open the doors of friendly approach i.e. 'communicate', 'tame', 'neutralize', 'melt', 'convert' into wastes and 'dispose' naturally in each flare or attack. HOW? Appropriate herbs like wild lingzhi formula can stop pain and effective for such actions. Correct natural foods of daily diet help slowly to rejuvenate the healthy level. It is a step by step to regain healthiness depending on severity of the disease. The result is positive. One has to work real hard to belief, learn, understand and use the method for period of time.
Only appropriate herbs can effectively work to challenge and outbeat the disease during flares and gradually reverse the severity. So no drug is needed for RA or other forms of arthritis/chronic diseases
Then the lifestyle changes by eating correct natural foods abstaining from preservatives, coloring and junk foods. Ensure that digestive system is fine and good daily toilet habit. In this way the metabolic adjustments are taking place within the body slowly to improve the imbalances to healthy level.
The gaining of healthy level is the disease dwindling power. The battling is over once the disease has no room for threat.
Your freedom from the disease, health and normal rountine person is the result of your hard work