What is Rheumatoid Arthritis
Rheumatoid arthritis (RA) is traditionally considered a chronic, inflammatory autoimmune disorder that causes the immune system to attack the joints. It is a disabling and painful ...
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Need support - warning major whining
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I don't even know how to verbalize what I'm feeling without sounding like I'm just sitting on my pity pot whining. I do know that all of you are pretty darn good at sorting through that and hearing what's really going on so here goes. I'm not a person who easily shares or trusts so this is kind of a leap of faith for me, but I feel very safe in this group.
I was finally diagnosed with RA the end of last year. I have high hopes for the new med they've started me on, Simponi, but so far nothing has helped. I work with homeless teens who are pregnant and/or parenting and their children. Even when healthy it can easily burn me out if I'm not very careful. I just had a very hard week at work. My beloved little Yorkie (Toby) was in the vet hospital with pancreatitis. I thought I was adjusting and handling the RA thing pretty well, but one night this week the pain really got ahead of me. Right now I take Restoril and Percocet when I go to bed and that allows me about 5 or 6 hours sleep before the pain wakes me. The night the pain got ahead of me my husband said I should call the doctor. My reaction was, "what do you think he's going to do?" Taking strong pain killers is not an option during the day. Twice when I've really been in alot of pain I've taken a percocet after work. It really doesn't help much. I'm taking Mon. & Tues. off work so I can have a long holiday weekend that I will spend resting. I have Sjogren's too so when I feel like crying my eyes out no tears come. I figured out that when I'm this upset and talking to a doctor saying I'm in a lot of pain looking like their are no strong emotions I'm not really heard. Last time I was there, and I do like this rheumy, he's my second, I told him how surprized I am sometimes to look down when I'm in so much pain to see only my own hands and feet and no blood. He then gave me the stronger pain pills and sleeping pills and said if the Simponi doesn't work we'll go in another direction. I am very spiritual and very involved in my church. I love my work and find it very rewarding. My husband is a saint. My adult children are wonderful. My son just gave me a year's worth of housecleaning service because it was bothering me that my husband has to do everything. I know there are plenty of people worse off than me, but I'm feeling very empty and used up. I feel like I just can't take this any more and there's no way out. If new meds don't help I'm afraid I will soon be in a wheel chair. When I was first diagnosed I read what I could find on RA and it all sounded pretty rosey with statements like, people with RA live normal lives. There are many new medicines that help RA. That's also what my first rheumy told me. I wish I had been told the truth from the start instead of being handed rose colored glasses. I apologize for being so negative. I just needed somewhere to go with these feelings. I'm sure many of you are younger and/or worse off than I am, but right now this is where I am. Sandy Posted on 07/04/09, 07:07 am |
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Ah Sandy,
My hat goes off to you. I worked in a woman's shelter for less then two years. They warned me hardly anyone makes it more then that as it is just so mentally and physically fatiguing. They were right! Way to go on helping others when you are so icky feeling and have home issues that tear you to the core (I'm one of those my pets ARE my babies so if it's sick don't expect a reaction less then you would give your five year old!). And just to try and put those rose colored glasses on you again. My uncle had polio when he was a teenager and never regained the use of his legs. He's been wheelchair bound ever since. You know what he still does for a living? He's a traveling salesman! And from what I hear a darn good one to! I can't imagine what it was like for him in the early 70's when handicap accessible wasn't a really common phrase or thought about much. It always surprises me what this legless wonder of an uncle can do. So yeah we may not be able to live the life we had originally planned but mercy we still have a life to live! It sounds like you are doing a great job beside the depression (which is normal) doing just that. Hugs and love to you on this fourth! 
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Sandy, Sandy, Sandy, this is THE place to whine and quite frankly you are not that whiny.
It sounds like you have a good support system and thats a good thing. I am a pediatric hospice/palliative care nurse, I too love my job, But, am finding that the mental and emotional stress of the job are horrible on my RA. I give myself a long weekend off every month and it helped for about a year but now even that doesn't help. I have been on call for the last 21 days and have not had a full day off in 14 days (thank God I go on vacation July 11th) If I find (which I think I will) that I am better physically because of the vacation and less mental/emotional stress I will begin to looking for a niche in nursing because I am no good to anyone right now. (See I whine too) I understand your frustration and the lack of sleep adds to that and the pain also. There are other sleep meds and other pain meds to be tried. Not all meds work the first time and often they need to be changed after a while anyway. Ask for a change in meds. Eye drops help with sjogrens ( I like Systane) they are OTC but work better than some of the others I have used. ENJOY your long weekend, do not think about any thing stressful, enjoy your family, take naps, hang out in the hammock or whatever floats your boat and say your prayers. Heres hoping you are better soon, keep in touch. Patty
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I've been there Sandy! I just read your profile and this jumped out at me "I feel like I live my life in 4 to 6 weeks blocks hoping that meds will work."
The four to six weeks between trips to the Rheumy where he might or might not decide 'well this isn't working' and put you on something new? Oh boy I've been there. Most of 2008 as a matter of fact. My pain magically started getting better this year and now I feel much better than I did. No change in meds, the pain of the flare just ran its course. And I hope soon it will for you too! "I wish I had been told the truth from the start instead of being handed rose colored glasses" I hear you! I think the fact that most Rhuemy's were still so exicted about having another set of drugs to try (biologics) that thier optimism gave a lot us false hope. Not to say that I've lost hope, I haven't and neither should you. Hang in there!
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I am so with you on the rose colored glasses statement. It drives me crazy to hear the commercials for the RA drugs and to visit doctors who just don't respond to our complaints of pain. I hope you get some rest and relief this weekend. Big hugs to you.
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Sandy, it's ok to vent - we all need to sometimes! Just try to keep holding on to the hope that there is some treatment out there that will be able to give you some relief.
I know what you mean about all the RA info saying many go on to lead "normal" lives. I always take those statements with a grain of salt. Normal compared to what? To those people who had RA 30+ years ago and ended up crippled with deformed joints? I often think of my aunt whose feet were so deformed later on in life that she had to have toes removed so she could walk again. Well, if the life I have in comparison to hers is "normal", then I will take it no questions asked. Sending you gentle hugs ~ Kim:)
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Wow! Thank you so much to all of you who just let me be in the space I was in and supported me. After two days of rest I'm feeling significantly better and I still have Monday and Tuesday to rest and regroup. I will use that time to rest and recuperate, visit with a friend I haven't seen and miss and to generally pamper and feed myself. I must never let myself get to the point where I feel so tired and used up and empty, ever again. I will also plan what needs to change in my life so I stay on a positive course. For me, that means assessing what I do and do not have control over both at home and at work.
I am so very aware that there are many people worse off than me. I deal with them all day everyday. I think because of that I haven't let myself have one ounce of pity for myself or to take even a minute to mourn what is essentially a loss. I teach others that you need to do that before you can begin to rejoice in what you do have. I would be much wiser if I followed my own advice. Please be assured that if ever any of you needs a shoulder to cry on or an ear to vent to I am here for you.
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sandy,
we love to listen when you need to whine, and will even offer cheese! we've all been there, so remember you are not alone! i constantly mourn all the things i've had to give up, i truly thought my life was over. all the fun things i did, now i can't do. but i made a discovery--this website, new friends, and, hey, i can still do some stuff! it's all a matter of attitude. it's really hard to stay positive sometimes, but that's ok. we need our pity party so we can go back up! we're with ya, lots of gentle hugs and rays of sunshine! brat
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I am so glad that you feel comfortable enough to share how you are feeling. I can tell you are a fighter because you want it given to you straight without the fluff! That means you WANT to get better and don't expect a miracle cure-but are trying to take the route to get better! You have a lot of stamina in you--all be it can be hard to see during a difficult period with ra. From what I have seen, it is all about finding the magic mix and hoping that it continues to work the magic. I am so sorry you are going through so much. I really do feel for you and I really do understand. YOu shouldn't sell yourself short though. YOu seem like a very positive person. Just having a hard time with a very stupid illness. I am so sorry!
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As you can see from the many posts, this is the place to vent! You've just started a brand new medication..and I'm hoping it works for you too. Keep in mind that any of these meds can take some time to work, but if you find you can't function then you should always call the docs office and let them know. My doc said they can't read my mind :-b.
Your work does sound both incredibly rewarding and taxing at the same time. Hopefully you'll feel like you are able to cope with it once the right med cocktail kicks in for you. In the meantime, I think most of us have had to adjust work/life schedules for a time when we were feeling our worst. It didnt mean that it was permanent for most of us...perhaps you can talk w/HR or your supervisor to discuss adjusting your schedule until you feel more in control? Take care, and hopefully you will continue to feel better. Hugs, Lisa
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