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What is going on with you Julia? PM me if you need to talk. Everyone here has something going on. Why is your stuff less important?
Jay
Julia that is why we are here. we need to hear from you, and we are in this boat together. Please don't rob us of sharing compassion to you.Yes we all go throug this at some point in our walk with RA..Sometimes it helps just to get it out. I know it does for me...Please share with us what is going on, I know we would all love to help.Julia, honey, please don't delete anymore. You want and need to talk to us. And we need to hear from you.
What happened,Juliah? I don't want you to delete anymore, okay? I am so worried about you. You a VERY important to me. Please write, or at least PM me.
There is no one on the board who is more important than you. We are all equally important. And you have had some big problems lately. Please let us in so we can help!
Much love and hugs,
Nini
Julia,
I know I didn't comment on this thread originally, but I feel compelled to now.
I want you to know that your original posting and the comments that followed actually made me feel much much better. Instead of seeming negative or whiney, it just confirmed for me that others feel this way from time to time too as a result of this disease. How you phrased how you were feeling, was exactly how I was feeling at the time, and for me anyway, it was helpful - and even cathartic to read.
So please don't feel bad about letting your true feelings out, when from time to time, they aren't always as "pretty" as you would like them to be... As you can see, it can actually even be helpful for others as well as yourself!
Kind Regards,
Melly
Thank you all so much for your caring responses. After I posted last night I felt pretty lame. I want to be positive, encouraging and upbeat, but feel anything but those things right now. I'll get real now, in hopes that others who feel these things will know they're not alone. I guess everyone has their ups and downs. I try to keep my "downs" to myself, but maybe it will help to write it out. Also, my husband has come on here from time to time, to get information on different treatments, and when I was in the hospital. I don't think he's read the boards in awhile, but I didn't really want him to know how bad I'm feeling. I feel like when I feel bad, I'm bringing others down. I try to put on a happy face and push forward the majority of the time. However, my happy face has been covered in tears the past few days. For those who see me and ask if I'm ok, I lie and say it's allergies. The truth is...I'm sick of being sick. I hurt constantly. My meds (or something) is messing with my equilibrium and I feel dizzy and off-balance, nauseous and just plain crappy. I used to at least have the desire to get out of bed and get things done. I was slightly neurotic about making sure the house was clean, never a dirty dish in the sink, etc. Now, I really don't even care. I haven't done my paperwork (for my job) in a month and am so far behind in work-related stuff, paying bills, etc. I want to stay in bed all day and don't feel happy about anything anymore. I don't feel like eating. Today, I feel so bad, I'm forcing myself to eat something healthy, for fear of continuing to feel this bad and ending up back in the hospital. I cry for no reason frequently throughout the day. I fear that there will be no end to living in pain. When I start feeling these things, I feel guilty. I think of kids who are undergoing chemo, or being treated for burns, etc. I feel selfish for feeling bad about things, for I know they could be SO much worse. I'm on cymbalta and did well with it for 5 months or so. Lately, I feel like the depression is too severe. I don't think of killing myself, or anything like that, but my joy is gone. I can't find joy in the things I used to. I don't like feeling like this. I should be cried out by now, but the tears keep coming. I feel like a failure for not keeping the house clean, for not working hard enough on my business (recently started a nonprofit children's counseling agency with a friend). I feel like I'm not a good enough mom for my 9-year-old son lately. I feel like my husband deserves a healthy wife, one who still has energy and desire for sex. Husband just pulled up and I don't want him to see me crying. Gotta go. Love to you all, Juliah
I am really sorry you are feeling this bad and don't have a lot of good advice for you personally as I am kinda right there too now....BUT I did want to say thank you for sharing these real feelings of yours again as it IS helpful for others (like me anyway right now)...and I am sure that someone else here who has "been there, done that" will be back with good advice for you...
Regards,
Melly
Julia....Thank you so much for sharing what is REALLY going on. I am so very glad you have opened up.
Your feelings are the same as mine. I have and sometimes continue to beat myself up for this awful disease. As my daughter said..."you did not ask for it and it is not a cold you catch." Honey it is what it is for whatever reason our systems are what they are. We both have to move beyond the blame and the thinking it is all our fault. It is not and our loved ones do not feel that it is our fault. Your husband is wonderful...just the fact that he will get on the website on your behalf is amazing...and he probably does not say much about being behind with the chores etc. Wonderful support...what he IS concerned with is the depression...and he has probably said so.
Juliah are you on an antidepressant? If you are maybe it is time to raise it for a while. You are not a failure if you take an antidepressant and I will share a secret...taking some of the Zoloft, paxil or prozac actually interrupt some of the pain receptors. You need help getting through this, and part of your help is being honest with people that are going through similar stuff. We know how you feel. I am where you are for the most part. I am so sick and tired of being sick and tired I could scream....but there is NO ONE to scream at. If you look at my posts since we got back from FIL's funeral...they have not been uplifting, but also when there is a fun thread I will join in. I find myself smiling just a little more even though I feel like crap.
Thank you so much for being honest....I will worry less if you continue. Jay and I were VERY worried last night! Please empty your PM box too.
I love you Juliah...my friend!
Juliah, I am so glad to finally hear from you! You need to share your feelings. And we are always here for you. I'm so sorry you are at this point. It is very hard to get through this time, Sweetie, but you WILL get through it!
I think the way you are feeling is one of the phases (or steps) you need to go through, on your way to coming to terms with this dreadful illness. If I remember correctly, you have other problems, in addition to RA. It is normal for you to feel like this! I'm not saying it's a good part of your illness, just that it is usually a part of getting to acceptance.
It sounds like the cymbalta is not working well for you. It didn't help me much, either. A few months ago, my pain specialist changed my anti-depressant to Effexor. I have also been on Zoloft, Wellbutrin and Xanax over the years. Sometimes things cease to be effective for us and we must try another one.
Please call you doctor, Juliah. Ask that they change your anti-depressant, because the one you are on are not helping your depression. I think they really need to know what you are going through.
When your husband signed on, he sounded like a very concerned and loving man. Maybe you can talk to him, let him know what's going on and how you have been feeling. Sharing with the person you love can really help lighten your burden. I don't know your relationship, but it sounds like he wants to be there for you.
Please let us know what the doc says. We are always here for you!! You don't have to face this alone.
Love and hugs, Nini
Juliah- Please dont feel guilty about the way you are feeling.We have all been there more than afew times and we are here to listen to you and try to help. Yes there are kids out there on chemo and I too have felt guilty for the way i have felt but it doesnt make your hurting any the less.
Depression with RA is so common as its such a debilitating disease.Are you being treated for it? Try not to stress yourself out and worry about the little things, concentrate on resting yourself and indulge yourself in things that meake you happy.
I read posts from your husband and he sounds lovely, talk to him and with his understanding it will help the both of you.
I was so ill a while back and I thought I was dragging my whole family down with me, there seemed to be a cloud hanging over my house, but once i shared how i was feeling we all pulled together and things got better. I am now in remission from RA ( or i could have lymes disease) and i am on no meds. I feel really good that its hard to imagine just how bad i was.
Do you need to see the doctor to have your meds changed or the dosage?
Feel free to talk to us and vent how you are feeling, it does help and everyone is more than hapy to give advice or to just listen.
Take care sweetie.
Lisa
I really appreciate everyone's responses. I've been on cymbalta for about 5 months and thought it was treating the depression fairly well until recently. Thank you guys so much. love, jJust remember we LOVE ya girl!!!Juliah,
Lots of great advise and support already. We are concerned for you and want you to use us as one of the tools availiable to you. We have or will all be in the same boat at some time.
You are a part of this great goup of people. Let us be there for you if needed.
Jay
Juliah,
I'm sure your story resonates very strongly with all of us who share this disease. At one time or another, we have all felt deep feelings of depression and despair, wondering what our future will be. The amazing thing to me is that today, starting my sixth year with RA, I feel a lot better than I did the first year. It's a testimony to the powerful and remarkably effective drugs that are available to us. A generation ago the prospect for anyone with RA was much grimmer than it is now. Yet, the process of finding a treatment that works can be slow and frustrating, and in some cases, very disappointing. In the meantime, what can we do to help alleviate these feelings of hopelessness and promote our own healing. We all find different answers but I thought it might help to share some of what I have found...maybe it will help you.
1) Denial is not bad in the beginning. It helps shield us from despair while our bodies and minds adjust to the new reality of life with RA. But if denial continues too long it becomes a barrier to finding acceptance and healing. (For me it lasted about 6 months.)
2) Acceptance is about turning to face the truth and embracing it as best we can...a willingness to live in the moment instead of hiding in past memories or hiding from an uncertain future. It's tough but things look less scary when brought into the light.
3) RA requires an awareness of our limitations and a willingness to make compromises. We often have to give up things that are important in defining who we are. Stubborn attachment to unrealistic goals can cause a lot of unnecessary suffering. I used to love long, vigorous hikes. My son and I hiked to the top of half dome and Yosemite falls. It's a wonderful memory but I can't do it anymore.
4) Our compromises and willingness to give up things opens up new opportunities to excel at new, more realistic, goals; but you have to look around and test your unused skills and talents. For me, I found two things which I now cherish as much as the things I gave up. I've started writing again and found that I have much more to say that I did before experiencing RA. And I learned to play a musical instrument, mandolin, and joined an amateur orchestra. I've played in 4 public concerts and it's exhilarating! I'm now learning to write music and find it wonderfully rewarding.
5) Exercise helps the body, mind, and spirit. I chose to start walking more (1 hr per day) and practice yoga (1 hr per day). It makes me feel more in control of my body and that releases stress from my mind. It's also a time that I use to talk through my own despair and depression.
6) Reach out to other people for support. I am fortunate that I have a small group with my church that has been a huge pool of support for me. I tell them everything and they are an endless source of love and concern for me.
One last thing. I'm reading a book by Darlene Cohen called "Turning Suffering Inside Out". It was recommended by another member of the board. Darlene has suffered from RA for many years and knows exactly what we're experiencing. I have found her words to be extremely encouraging and her suggestions on how to deal with the pain and suffering this disease causes very practical and helpful.
Good Luck, Alan
Hi Juliah,
What you're going through is difficult, and I especially was able to relate to the part about always trying to smile and tell others I'm fine.
You've received scads of love and good advice here. I enjoyed Alan's list, as it's true and makes so much sense.
Wishing you well.
Hi Juliah, just want to say I am thinking of you.
THINGS WILL GET BETTER SOON!
Juliah - My heart breaks hearing what you're going through right now. I think for most, if not all of us, acceptance is probably the hardest thing to come to terms with in dealing with RA. I also think there's a certain amount of grieving we must go through before we can learn to accept the lifestyle changes brought about by this dreadful disease.
I'm not sure where I'm going with this, as I myself am still in the grieving process, mourning the loss of the 'old' me, and trying desperatly to accept and come to terms with the 'new' me. But I just want you to know that you're not in this alone. That it's OK to share your down moments. We all have them, and sharing them is what makes this board such an important tool in helping to lessen the grief and learn to accept.
Wishing you much peace and comfort,
Gale