I cried for the first time in ages. I have had a bad flare (my doctor took me off Methotrexate because of my liver tests) and had to wait for my Embrel because of red tape. In the interim I had a terrible weekend. But I finally got my Embrel shot yesterday. It went fine but today I was so sick that I had to go to bed for the day. Not sure it was the shot of Embrel that added to my pain and fatigue or the fact that I have been without medication (except for prednisone) for 3 weeks. All I know is I am missing the fun. I have been sick most of my life and have always been able to hide it with a smile on my face. My glass has always been half full and I have managed to keep a very positive attitude. But, I am getting older and it is harder to keep this disease a secret. I used to be able to push myself but finding that harder and harder to do. But, getting back to the point...I missed going out with our friends tonight. And they all had such a good time. They said they missed us but I am feeling so left out and there is nothing I can do. I hate that I have gotten to the point that others need to know when I am under the weather. Have any of you had that same feeling? Hopefully tomorrow will be better for everyone! SusanLee
I'm sorry you couldn't have fun with your friends but I do hope you will feel better soon and get to make up for it. Hang in there as best you can. The good days will return!
I am sorry to hear that Susan. I sure do hope you get the full benefits of Enbrel soon. That way you will not be left out of the fun! I hope your week improves.
June
My heart aches for you Susan. But I know things will turn around for you. And you can always hang out with us :-)
And YES, have had identical feelings.
Susan, I am a firm believer in no secrets. I tell everyone the truth. I tell strangers that I have ra that see me on my gimpy walks. I talk openly at work. I figure I am doing them a service. Educating them. They can understand or not but I am not going to feel embarrassed or bad because I had the misfortune to get ra. This is my attitude. Who knows, it might make you feel better. I am sorry you have been holding this in. Please come here to share. There is always a hug waiting for you here.Susan, there's no reason your glass shouldn't still be half FULL and you holding on to that positive attitude. I know it's hard when you try to work through that "left out" feeling, but things will get better.
Allen
Allen...what a really nice message. Thank you so much for sharing your experience with me. I think it is just wonderful that you stayed home with your sister-in-law. I am sure she felt blessed to have your company. Hopefully your family learned from your thoughtfulness. And yes, I will keep my positive attitude and my glass will always be half full. I have so much to be grateful for. I am blessed with a great husband, wonderful children, grandchildren and friends that call all the time. And tonight as I looked at the situation, I came to a realization. I think I need to forgive myself for the few times I have not and will not be able to join in. I think I have always felt that I should be able to do anything if I try hard enough. And I now realize that through no fault of my own I might need to rest instead of run. Boy this is deep! So thank you again for your kind words. I hope life is bringing you lots of good days. Susan Lee
I do take pain pills but it effects my memory so much that I absolutely hate taking them. I haven't been able to find a dose that works that doesn't have bad side effects - but I'll keep trying.
SusanLee, your glass if half-full. Just because we have a chronic disease doesn't mean we can't have full, fun and productive lives. We may need to adjust on a day-to-day basis, but we can still do it.
I think most people have problems in their lives, whether it be health, etc., but there is a lot to be said about how we handle our problems.
I agree with you about people telling you how to live your life and how to deal with your problems - personally, I try to take them with a grain of salt especially if they are critical.
I try to remember that while I hate RA, there are worse conditions to live with that actually make me grateful that I only have RA. I'm not belittling the problems that come with RA because they can be severe and debilitating and have huge impacts on our lives and those around us but I guess for me personally, I'm glad I don't have ALS or something to that affect so my glass is half-full. Hang in there and try not to let others get you down!
SusanLee~I know what you mean....but I am kind of on the fence about telling people about my problems. Even people with the best of intentions can drive me absolutly crazy with their well intended concern and suggestions.
I've been dealing with this for 11 years. I think for me (Obviously I can't speak for others) I want to be seen as normal. Whether I am or not...I don't like being treated differently and being preceived as "Sickly" and like it or not once people realize you have a chromic illness that's the label you get "Sickly". A good bit of the time I'm not sickly....and during those times I just want to be seen as normal.
I went through this this past week. I was in such bad shape with my back it was absolutly dibilitating. I didn't want people to know that....family and friends that are constantly concerned about me. I don't want them to worry about me so much...and more than that; I've lived with the fear all these years that eventually my family and friends would tire of my problems and loose concern all together. I know that sounds weird....but it's a fear I live with. So in an attempt to keep my complaining to a minimum I rarely complain to anyone that my condition does not directly effect. It sounds weird...but I do not like being asked every time I see someone "How are you feeling?" I don't want to lie to people....but I don't want to tell them the truth either. "I feel like sh*t!!" No one wants to hear that. They ask to be nice....but for the most part they get tired of hearing about "Poor me"
As for telling complete strangers in the grocery store I have RA; it's none of their freaking business!! What business of their is it if I'm walking with a limp? Absolutly none.
Close friends and family are the only ones I tell...because they are the only ones it affects. It's no one elses business. They don't really care....and it just makes you appear sickly; and you won't always feel sickly. They'll be plenty of times you'll want everyone around you to forget you have anything wrong with you.
I've tried to keep it a secret most of my life and at age 51 and with visable damage I can no longer 'pass' for normal.
But you know even 'normal' people, put their backs out, sprain knees and ankles, blah blah blah. See just 'cause you have a chronic disease doesn't make you abnormal, normal humans get sick, they hurt, hay they even die!
I may have a major battle with RA but my life is a good one. Poop on the pity pot folks, and the whispers too.
It's interesting to see how different people handle their illnesses. Ever since my church became aware that I have congestive heart failure, I have felt like I've been treated a bit differently. Not a service goes by that someone does ask, with concern, how I am feeling. I am grateful to have people who care about me in my life, but do not really like much attention and it makes me feel a bit uneasy and weird sometimes. I don't know how to say that without sounding ungrateful, but I'm trying to put words to something I don't really know how to express accurately. I rarely mention RA because I think people don't generally see it as much of a problem in the whole scheme of things (though we know differently). I find that most people think of RA as some stiffness, aches and pains. What purpose would it serve me to tell them otherwise? I find that people really only care to be educated when the disease affects THEM (or their close loved ones). I did actually meet a lady in the grocery store the other day. She was telling the bakery lady that she has RA and I ended up talking to her about it and offering her support. I gave her the name of a great doctor who just moved to town and empathized with her a bit. I don't walk up to people and tell them I'm sick with heart failure or RA though. I DO tell people who count on me for things. For instance, I was nominated PTA Vice President this year and I told the committee that I did not feel comfortable accepting b/c of health problems and fear of not being able to attend all meetings/functions. To me, that was honest and kept them from thinking I just didn't want to do it and that I didn't care about the PTA. As it turns out, they really wanted me for the position, limitations and all. I do not attend meetings/functions if I feel poorly and they understand. They are some of my biggest supporters now and often show up with casseroles if I'm MIA for too long, LOL! Most of my friends know about my health issues and I love them for the support/prayers. I rarely talk about feeling bad and try to focus on what I CAN do. Things could be MUCH worse than RA. Imagine being paralyzed or terminally ill. RA is NOT the most dramatic, horrific thing that could happen. I think a lot of how you feel can be influenced by how you cope with your illness. Some are intent on being sickly. Others are fighters. I think most in this group are fighters. I HAVE seen women though who just gave up on their health at the first sign of trouble. A friend of my moms just gave up after being diagnosed with RA. She didn't follow through with doctor's recommendations. She would not take care of herself (with meds, nourishing her body with good foods, smoked, etc). She viewed herself as "sick" and quickly got the handicapped permit and the hov-a-round. She stopped doing for herself and moaned about her health to anyone who would listen. If she spent as much time trying to take CARE of herself as she did looking for sympathy, she'd be much better off. On the other hand, I have a friend (Jerry) who has severe muscular dystrophy. Jerry is in constant pain and crippled. Jerry gets up everyday and gets to the gym where he is a personal trainer. Though he can't physically DO any of the exercises, he's the best trainer I ever had. The fact that Jerry CHOOSES to get out of bed each day and get to work makes me want to do more. Jerry's outlook is very positive. He tells me that he could be at home, in pain, suffering each day, feeling sorry for himself....or....at the gym, in pain, helping others feel better about themselves. I want to be a Jerry. Attitude about our illnesses is SO much a part of it. Love, Juliah
Lovie...Thank you for your message. I have lived with illness all of my life and like you, have felt so comfortable with my decision to make it my decision who I discuss it with. I so dislike pity. I have always considered my health issues my personal challenge and didn't feel the need people to have people feel sorry for me. Yes, I have wonderful relationships and my close family and friends know but they are so clued into the fact that I want to be remembered for the kind of person I was, not my health issues. I was very sick the other night but now I am feeling better and back to my old self. Onward! I have and continue to have such a good life! My illnesses have never stopped my desire to enjoy every minute of it. I guess you could say...since it is my life...I am doing it my way!:)Susan Lee
Thanks for your message Sue. But I want you to know that when I wrote that e-mail I was so sick I probably didn't explain as well as I should have. I was talking about a new bunch that I really wished I could have been with. And yes I have told them too but not to the extent that it has brought on pity. But, my husband, close friends and family are wonderful and supportive. And, I am certainly not ashamed. If anything I am proud of the way I have handled my health issues. And I am usually comfortable with my decision. Not stressed! Just a bad night and I am glad I am through it. Thanks for your message. Susan Lee
I don't know why it bothers me but I hate it when people (my Mom) asks me constantly how I'm feeling. I have a habit of always saying "fine". Now she always comes back with "are your really fine or are you just saying it?" I have a hard time not snapping at her. I know she only cares but someone how that always annoys me.
It is interesting to see how everyone handles their RA. As far as I'm concern, there is no wrong or right way, just the way that works for you. May today be a good day for everyone!