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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I think that rose colored glasses is a way we sometimes describe optimism. For me, some days are good. I can walk and do lots of things, but a lot of days are bad and I have trouble walking more than a few inches and hurt all over. Right now, I hurt every morning until about 3:00 in the afternoon and then I feel better till bedtime. The cycle starts again every morning. I will pray that God heals you but that if He chooses not to, that He will give you the grace and the humor to get through all that this terrible disease brings. Don't give up. There will be better days. 
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Oh Sandy I'm so sorry you're feeling so down. And I'm also sorry your Toby isn't well. Your family sounds wonderfully supportive and that is such a blessing. I so admire the work that you do and I know that if can wear you out and be rewarding at the same time. Please don't appologize for wanting to vent. We are here for you whenever you need us. Hugs & Prayers, Cindy
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Dear Sandy, I wish I could wave a magic wand and make all your pain go away. Please don't give up hope. Things will improve. Remember you can come here anytime and scream and shout if you need to. We all do it and it helps so much :-)
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Sandy, I am sorry you are feeling so down and in so much pain.
I know you have weighed all options, but you may need to alter your work schedule or type of work, so that taking pain meds during the day would be more viable? Easier said than done, I know. I would like to say, never give up hope. MOre good days WILL come. I am sure of it. I hope your med starts to help soon. Jess
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Remember we are here to whine to when needed! And sometimes we ALL need a whine outlet!
Don't apologize for being negative, it is where you are at the moment you wrote this and that is fine. I have been there and will be there in the future too! You are loved. Sandy
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Hi Sandy!
I can so relate to you. I was Diagnosed also in Dec'08 and I thought this is the end of a life I once knew. Thn I found this site and the people her at DS are so supportive and encouraging. I found a good Rheumy fianally. My reg. Dr. had already put me on Methotraxate and I am going on my 7th week on Tuesday. I can tell you that I think it is working already a little bit because I feel less pain in my Wrist. My Knee is still so swollen and does hurt a little. It just feels tight. I am sure that will also give as time goes on. I wish you could tell your Rheumy to try The mtx or what ever else he might wnat to start you on, because the drugs your on are pain pills and that doesn't help the progression of the disease. What you have read about people leading full lives is true. Right here on DS you'll find alot of people who have gone into remission and that is what everybody hopes for. You will have good days and then bad once too. I am glad you are taking alot of rest, that is so important. It also sounds like you have a great family. My Husband is also very supportive he just can't understand that I am fine one day and then the next I can't walk. It is an up and down disease, but unless I go into full remission it is going to be like that for awhile. Anyway come back to us alot and welcome, I sure hope Toby is going to be alright too. Bigi
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I am so moved by your responses. I didn't think I'd hear from anyone Saturday morning on a holiday weekend. You are all so kind. Your support helps immensely.
Sandy
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Hi Sandy:
My heart goes out to you. Working in social services is difficult but it is even more difficult to focus and find empathy when we are hurting (and it feels like our pain has to be invisible). I have been an RN and a psychotherapist for many years, working with difficult teens and adults who are referred through social service agencies. Sometimes, sitting for 8 hours, listening and empathizing is more than I can take or give...so i have had to cut back. Good on you for taking the time out for yourself as that may be one way to ensure that you can focus on your own needs. that is also living by example. We often tell our clients that they should be taking care of themselves and we work so that they have healthy boundaries...while struggling with our own focus. This disease is a bear...but it does allow for better days. I hope that you get there soon...
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Sandy -
You are allowed to whine/feel sad/feel mad! Do not apologize! I am sorry you are feeling so much physical pain; it's amazing how much emotional energy is used up dealing with the physical. Your holiday schedule sounds perfect. Rest, rest and more rest. I know this sounds totally corny - but when I need some respite from the pain, I pop in some comedy videos and try to laugh the pain away. It sounds like you have a great support system in place; try to take some comfort in that. Get some rest. It will get better. - J
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Sandy, i know how you feel. sometimes this stupid disease still gets to me even tho i have had it over 20 yrs. your job must be as emotionally draining as it is phsycially. sometimes our emotions trigger things with ra and make us feel even worse. with a job like yours i can see how things get the best of you. as far as your pain level, perhaps you need to try a pain medication with an anti inflammatory in it , like talacen (ultram and tylonol 4) . there really is alot of treatments for ra but unfortunatly they react differently with each person. here is a link to a list of some treatments. it may not be much, but perhaps after researchin them, they will give you some ideas to ask your rheumy about. i hope this helps.
http://www.health.com/health/condi... you can read more about those medications on http://www.drugs.com/ . again i hope this gives you some help. try to be more positive about things. it sounds like you have a very loving family. and that is one of the main things in helping to deal with this disease. and it is alright to come here and whine and spill our hearts to each other. we are always here for you. *hugs* amy
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