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Replies to 'Living with Chronic Pain'
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July 23, 2007, 4:44 pm PDT
 Quote From: lld1984 Dear fellow RA patient - you are not alone.
That said, although I empathize with your pain, I do not relate to your violin. At age 11, I was diagnosed with Polyarticular Rheumatoid Arthritis in every joint in my body. I have since been diagnosed with additional diseases, Scleritis, and Raynaud's, believed to be triggered by the RA. Yes, I feel extremely old, often have debilitating pain, hate how my ligaments pop, and I'm scared to death of the future. Now age 23, I'm hesitant to ever marry as I know I'll be imposing a huge burden on someone else. I'm scared of becoming the crippled old woman with claw-hands. I still am trying to come to terms with the fact that I likely will not have children due effect of the biological-modifying drugs I've been on and my inability to care for a child. Rheumatoid Arthritis is painful and scary, and is ten-fold so when it occurs to child as they never get to experience the healthy freedom that you had up until your 50s.
Therefore, I must say I'm suprised at how you cry and carry on about how bad things are. If there is one thing a disease can give you, it's perspective. You are alive, have all your senses, and have a family. You do not have paralysis, or a fatal disease such as cancer, MS, Parkinson's, etc.! You can live with arthritis - so be thankful for that!!! Life is beautiful!!! Did we deserve RA? Absolutely not. But did we deserve to be otherwise healthy, enabled, and to be born in a country of opportunity and excellent healthcare? Absolutely not. I am more thankful for what I was given (and the worse diseases I was saved from) than I am upset about the challenges in my life. I don't know what the future holds, so I'm going to enjoy everyday I can instead of worrying about what the future may hold! Even if in 10 years I am disabled in a wheelchair, I'd much rather look back and say 'Wow I'm so glad I enjoyed life back then...I'm glad I didn't waste a minute of it feeling sorry for myself!' When life gets tough you either have to toughen up or cry about it....and you only get one life, so from experience I'd recommend just counting your blessing and making the most of everyday! So what if I don't get married, have children, and a 'normal' life....I'm still so fortunate to be alive, intelligent, free, and have an amazing friends and family!
Try complaining about arthritis to someone who is dying of cancer. Your perspective on how great you have it might change a bit....
Best of luck on enjoying your life!!! I'm going to take a page out of your book and I hope you feel like you made that poor lady feel!!!
I do empathize for you and everything that you have and will go through. And you are not alone. Now that I have said that little girl you had better pay attention to some sage advise about people and how to acutally talk or type to them.
I don't agree with what you just did to someone else's pain. Who are you to judge how someone reacts to pain or in telling their story. Did someone make you the leader of the Universe to judge how someone deals with their pain? Because if they did I sure as hell didn't get that memo.
I have over the years learned to live with thing where I don't have a choice. Every single human being has and will. You don't have the right to critize anyone. I do feel sorry for what you have to go through and would never wish that upon anyone. But I will put money on it you to have your down days where you feel the world going agaist you and you pull this crap? Honey you are very young and still have a lot to learn no matter how ill someone is you don't piss on them!!
I'm breaking one of my very own rules and that is passing my own judgement. This upsets me greatly because I don't like it when it's being done to me. But I will also never let someone else get away with what you did. Even my 8 year old son wouldn't do that. Seems to me he has better manners then you do. If you truely think what you did helped that person you are sadly mistaken all you did was hurt them more. It wasn't inspirational at all. Did you ever think that sometimes people just need to vent not "cry and carry on" as you say? Did you ever think that sometimes people just need to tell their story and not feel alone and hope that there may be a connection out there? Did you ever really think about what you just did. Honey you did your own whinning and crying and carring on you just never knew it. I strongly suggest that you re-read what you did. It was very immature and very rude. For someone who says that their disease gave them prespective I do believe you lost yours along the way.
BTW who in their right mind would even consider complaining to anyone dying of cancer. Little girl you have a lot of growing up to do.
Sorry Laddi that someone would dare to slap you in the face the way they did. It is totally uncalled for and I for one will never keep my mouth shut should I see it again. My parents brought me up much better then that.
Huntn |
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March 6, 2008, 8:33 am PST
Quote From: lld1984 Dear fellow RA patient - you are not alone.
That said, although I empathize with your pain, I do not relate to your violin. At age 11, I was diagnosed with Polyarticular Rheumatoid Arthritis in every joint in my body. I have since been diagnosed with additional diseases, Scleritis, and Raynaud's, believed to be triggered by the RA. Yes, I feel extremely old, often have debilitating pain, hate how my ligaments pop, and I'm scared to death of the future. Now age 23, I'm hesitant to ever marry as I know I'll be imposing a huge burden on someone else. I'm scared of becoming the crippled old woman with claw-hands. I still am trying to come to terms with the fact that I likely will not have children due effect of the biological-modifying drugs I've been on and my inability to care for a child. Rheumatoid Arthritis is painful and scary, and is ten-fold so when it occurs to child as they never get to experience the healthy freedom that you had up until your 50s.
Therefore, I must say I'm suprised at how you cry and carry on about how bad things are. If there is one thing a disease can give you, it's perspective. You are alive, have all your senses, and have a family. You do not have paralysis, or a fatal disease such as cancer, MS, Parkinson's, etc.! You can live with arthritis - so be thankful for that!!! Life is beautiful!!! Did we deserve RA? Absolutely not. But did we deserve to be otherwise healthy, enabled, and to be born in a country of opportunity and excellent healthcare? Absolutely not. I am more thankful for what I was given (and the worse diseases I was saved from) than I am upset about the challenges in my life. I don't know what the future holds, so I'm going to enjoy everyday I can instead of worrying about what the future may hold! Even if in 10 years I am disabled in a wheelchair, I'd much rather look back and say 'Wow I'm so glad I enjoyed life back then...I'm glad I didn't waste a minute of it feeling sorry for myself!' When life gets tough you either have to toughen up or cry about it....and you only get one life, so from experience I'd recommend just counting your blessing and making the most of everyday! So what if I don't get married, have children, and a 'normal' life....I'm still so fortunate to be alive, intelligent, free, and have an amazing friends and family!
Try complaining about arthritis to someone who is dying of cancer. Your perspective on how great you have it might change a bit....
Best of luck on enjoying your life!!! Where do you get off thinking that you have all of the answers and that you gave that lady "sound" advice? I am 35 years old and I was diagnosed with RA and Fibromyalgia in 2003. (One year after my son was born and four months before my mom died from complications with RA and Lupus.) Just recently I was diagnosed with accute chronic pancreantitis. You can't tell me that you can understand anything that she is going through except for the chronic pain. One thing about ignorant people that makes me so angry is when someone says, "I know how you feel". No they don't. You are not feeling my pain when I have to get out of the bed to wake my 6 year old up to get him ready for school. You don't know what I feel like when I have to pick up my 18 month old and get her ready for the day. You have no idea what I feel like when I have to stand up on two feet that feel like they are bruised and tender and the joints won't bend. I can explain it to you, but you will never know how I feel. The only way to give the kind of "advice" that you have given is with ignorance sitting in the passenger seat giving you dirrections. I am sure that she did not write her comment to get pitty. You on the other hand I think that you wrote yours just to get attention. I pray that for you with age will come wisdom. I could never imagine being in your shoes and having all that you have to deal with. My disease has given me perspective. I know that there are people out there that have it worse than me. There are people out there that can relate to what I am going through. There are also people out there that stand on their own soap box and pound their chest to make others think that they have it all under control and they have finally figured out all of the answers. You are still young. You will face many problems in your life. You already have the cards stacked against you. Don't create more by thinking that you have it all figured out. Sure I know more now than I did when I was 25, but truthfully, I still have no idea. Before you start judging someone because they are having a moment of weakness, remember that her diagnosis is only a few years old. It is a frightening disease. You have been dealing with this for a while. Lift her up, encourage her. I'm sure that she is aware that others have it worse than her. We are only human and we are allowed to have days when we just want to tuck our head back into our shells and ask "Why Me?" Kim |
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