Rheumatoid Arthritis

[halvard]

I want to break my silence. I want everyone who is reading this to know that Rheumatoid Arthritis is so misunderstood by society that perhaps all of you feel as if it would be easier to have non-life threatening cancer or a more identifiable disease which commands human compassion. I suffer in silence every day of my life. I suffer in loneliness, and in pain which can not be understood. If you have this chronic condition my readers, I must put my heart out to you with empathy. I pray for all of you. I am so sorry this happened to you, but it is NOT your fault. You can write one sentence. You can write and cry. You can share your experience or loneliness. You can tell us how you found the right support. Just open up your hearts to me and others if you can.

Every day I am bewildered by comments which blow me away. For example, I love it when people tell me they don't understand why I just don't take a "Tylenol" and move on with it. One friend had asked me how my "Rheumatard" was going. I recently had surgery with many complications, and the RA just complicated everything. It has been two and one half months since my foot surgery - which should have healed in 3 weeks. In this short period of time I have lost all of my friends except two. One has a chronic illness, and the other is a cancer survivor. I suffer every day in silence and my loneliness and physical pain are eating my heart away.

I no longer want to suffer in silence...

Is there anyone out there???????????

Ellie-ritis

[ginlyn]

I am so supprised that others have not said the same that you did so beautifully. I hate this disease it is very misunderstood, people don't care to understand what we go threw on a day to day basis. That includes Family members. I get so frustrated and upset most of the time, people treat this disease likes it's Osteo not like thats fun either. I have both OA and RA. My RA Doctor tells me to stay away from people that stress you out on purpose. I have my Mother and my Daughter that are doing that to me right now. They are having a problem between the 2 of them to do with my Grandson and both are trying to put me in the middle where I don't belong and should not be in the middle of. My Husband will not step in and tell both of them your daughter and your mother doesn't need this stress, I am feeling pretty alone right now not that I don't feel pretty alone most of the time anyhow. I would rather have Terminal Cancer at least people understand that.
Ginlyn

[halvard]

Ginlyn,

Goodness, thanks for responding to this post. I had started a post on nueroma surgery, and then viewed as much as I could find on Rheumatoid Arthritis, but it seems we are a small group of sufferers. I had lost all of my friends after my neuroma surgery (unlike that of my post hysterectomy surgery - for which there too, is a group, "hyster-systers") either because they were tired of my need to be alone with my pain, tired of my crying, or because they were too neurotic about it and calling me incessantly. I also suffer from a post surgical nightmare from neuroma excision. That too is way misunderstood.

I joined a support group for chronic pain and it was brilliant. Then the facilitator suddenly told the group that we were not allowed to socialize outside of the group. The few people I had found as my saving grace in support were angry, as was I. I think it is time to stick up for myself.

It is time for you to go beyond your immediate family and find a group any way you can. Isn't it funny how they have all of these programs in your town for AA, Cancer, Bereavement, Divorce, etc.? Look in the local yellow pages. There is probably a meeting going on around the corner from you from one of these afflictions as we speak. I called local hospitals for such a group for RA and there is NOTHING.

So maddening. So hard to deal with pain when on top of it, you feel guilty, angry, abandoned, misunderstood. This is what I love most, when I must splint a limb or limp: "what is wrong with you?" "Oh, I have RA." "You have WHAT?"

"I have Rheumatoid Arthritis." The common response, "oh - I have that too, in my pinky and it hurts, a little in my knee and on rainy days I feel older."

These nimrods think osteoartritis is what RA is. So complicated. Better to say you have breast cancer and then they will bring you food when you can not move, call to see how you are doing etc. I have osteo too, Ginlyn, but that I can live with. That is like having a little cut and using a band aid unless of course it is very advanced.

The last comment a friend had made: "How is your rheumatard?" Yes, that is really FUNNY, no? Hardly. She laughed when I corrected her. To me that is like laughing at a disabled child, or a child with Down's Syndrome. The fact is, the world seems cruel when you are in PAIN and feel alone. You are suffering in silence, and you broke your silence by responding to me. You are no longer alone, Ginlyn. Beautiful name. Is it Asian? Just a lovely name.

Ellie

[ginlyn]

There have been people that I have met with RA, Lupus and such and we tried to have a group get together but it seemed when others had a flare the person we would meet with would have a problem when you could not meet with the group but when they had a flare it was understood that they could not meet, it was their way was the only way. Well I have a Mother like that and I don't play those games. Anyhow having groups and get togethers and talk never really helped so I have pretty much given up on them.
Good Luck
Ginlyn

[halvard]

What do you mean when you say, "I have a mother like that?" I am very interested, very, very interested - for a very specific reason.

Do you talk to her?

Ellie

[ginlyn]

Since you seem to be interested in my meaning is the way things work for her is her way. I have tried nothing but to be their for her, My Father died almost thirty years ago ( it will be 30 in Febuary). My sister and her family walked away from my Mother for over 20 years, So did my Mothers sister. I tried to be their for her, but a lot of times all I got was her misery and irration from everyone elses walking away. Then all kinds of things I don't care to totally tell and talk about happened with her boyfriend, he basically did something he wasn't supposed to do, asked me not to tell my Mom about, then threatened I better not tell her, Then my Husband told the boyfriend he better tell my Mother what he did before my Husband told did my Mother. She of course sided with the boyfriend after a lot of other conversations she told me she never appreciated my being their for her. I talk to her but as for a good relationship it's not. I no longer jump when she says how high. I am no longer the daughter that used to be there when she thinks I should be.
Ginlyn

[halvard]

I can not read this clearly. But it seems that you do not want to discuss this any further. Sorry. I meant no harm.

My mother is a registered nurse and has no clue at all from what I am suffering!!!!!!!!!!!!!!!!!! She is very self absorbed, lives in her own world and continuously forgets that I am ill. If she gets sick, the whole world should cater to HER. It is ALL about HER, and always has been.

So I cut her out of my life several years ago. I do not talk to her at ALL anymore, nor do I consider it healthy. In fact I told her that she was not allowed to contact me or my daughter but still writes cards and does not know her boundaries.

Sad.

[ginlyn]

[quote="halvard"]I can not read this clearly. But it seems that you do not want to discuss this any further. Sorry. I meant no harm.

My mother is a registered nurse and has no clue at all from what I am suffering!!!!!!!!!!!!!!!!!! She is very self absorbed, lives in her own world and continuously forgets that I am ill. If she gets sick, the whole world should cater to HER. It is ALL about HER, and always has been.

So I cut her out of my life several years ago. I do not talk to her at ALL anymore, nor do I consider it healthy. In fact I told her that she was not allowed to contact me or my daughter but still writes cards and does not know her boundaries.

Sad.[/quote]

Halvard
I do understand No harm done. My Mother is all of that plus what I wrote about above but she is not a former RN. This might sound strange but to an extent, I do blame my Mother for some of my health problems.
I don't want to write it all because it is very long and quite honestly when I write about my relationship with my Mother, it causes me a lot of stress and anger, so if you thought I was angry with you it is just how all the stress and anger my Mother has caused me in my life affects me. The part about your Mother being self absorbed, lives in her own world forgets your sick, the whole world should cater to her or revolve around her, it's all about her and always has been sounds like my Mother to a tee. So I understand and I am sorry if I sounded defensive. My feelings and story about my Mother and how she is, is a very hard thing for me to talk or write about. In fact it almost sounds like because I am sick and my sister is sick, it's almost like my Mother feels out of the loop, my standard answer is I would not have a problem with my Mother having the illnesses I do and me being mostly well, after all I would not want my Mother to feel out of the loop (LOL).
So I do understand
I have tried to not have a relationship with my Mom, but the problem is my kids have a relationship with my Mom and that also my Grandson has a relationship with her but I just keep her and my relationship with her on a very long leash.
Hopefully hear from you soon. if you want
Ginlyn

[ginlyn]

Halvard
I do understand, No harm done. My Mother is all of that plus what I wrote about but she is not a former RN. This might sound strange but to an extent, I do blame my Mother for some of my health problems.
I don't want to write it all because it is very long and quite honestly when I write about my relationship with my Mother, it causes me a lot of stress and anger, so if you thought I was angry with you it is just how all the stress and anger my Mother has caused me in my life affects me. The part about your Mother being self absorbed, lives in her own world forgets your sick, the whole world should cater to her or revolve around her, that it's all about her and always has been sounds like my Mother to a tee.
I understand and I am sorry if I sounded defensive. My feelings and story about my Mother and how she is, is a very hard thing for me to talk or write about. In fact it almost sounds like because I am sick and my sister is sick, it's almost like my Mother feels out of the loop, my standard answer is I would not have a problem with my Mother having the illnesses I do and me being mostly well, after all I would not want my Mother to feel out of the loop (LOL).
So I do understand
I have tried to not have a relationship with my Mom, but the problem is my kids have a relationship with my Mom and that also my Grandson has a relationship with her but I just keep her and my relationship with her on a very long leash.
Hopefully hear from you soon. if you want
Ginlyn

[mimossa]

Yes I am out there. Have had RA since 2003 and the pain on some days is almost unbearable. If you lost friends because of this disease then they weren't really friends to begin with. Find yourself a good RA Dr. and he/she can recommend a good support group in your area. I find writing in a journal helps and sometimes a good cry is cathartic. Let me know how you're doing and I'll do the same...