People ask me all the time how I am feeling. It used to be something that didn’t bother me. Then I became sick.
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fairly medium
Lene Andersen
Wednesday, April 09, 2008 at 12:24 PM -
children
Penny
Thursday, April 10, 2008 at 10:31 PMI got the dreaded news in August of last year. I have RA. One of the hardest parts for me is dealing with the disappointment from my daughter. She is only 5 years old. She doesn't understand. It hurts me severly not to be able to play with her at anytime. I have stayed awake alot crying because of this. How do you deal with this?
replyre: children
Maria
Tuesday, April 22, 2008 at 11:07 AMIt may seem like the end of the world, but it's not. I have struggled with this for 10 years now, and I have an 18 year old, 11year old daughter, and a 4 year old son. I can relate to you so much and I will say that your young daugther may not understand, but I have found that the younger they are, it's a bit easier to preoccupy them with acitivities to keep them a bit busy. My oldest son has dealt with it with me the longest, but he is a good son about it all. My youngest son gets disappointmented but quickly finds ways to help me and help himself! The one that is having a harder time is my 11 year old daughter. She constantly will get upset and wishes that I could get better so we can do the things that we used to do. That is so hard for me to hear, especially when I am having a "bad day" and all I want to do is lay there and pray the pain subsides just a bit. Please keep your head up because you are loved-your lil' girl will love you through it all!! Don't give up, just take one moment at a time-that is what I do....my place may not be the cleanest place, but it beats me killing myself over cleaning and keeping things in place when my health is more important. Maybe your daughter can help you too, by keeping you laughing in your darkest moments-my son does. Let her gently massage your feet, or put lotion on you....believe me, she will want to do that....Timothy does all the time and it makes him feel like he's helping me out. Maybe she can even pick that darn piece of paper up, or get your shoes when you're having a bad day.....anyway she can help I hope it lifts your spirits up---and eventually help her understand a little bit more as she grows up...God bless you and I'll be praying for you....keep that chin up, well as far as that darn RA will allow you to!!
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the silence..
allenswife02
Saturday, April 12, 2008 at 05:10 AMHello. My name's Keisha. You were talking about how when you walk into a room, everyone stops talking. Well, it's the opposite for me..when I walk into a room, everyone keeps talking and leaves me sitting all alone for, what usually is, the longest period of time (maybe up to couple hours). Even if that person invited me over, it's like I'm not even there. Someone who is suppose to be very close to me doesn't even care about what's going on with me. She usually tells me it's my fault. What does a person do with that?? I think most the time I wish it was just silence when I'm around her. And if we actually sit down and talk....it's me who does the talking. If she does, she just runs her mouth and pretty much tells me how stupid I am for doing certain things (that the doctor even tells me to do) or tells me, as was said before, that things are my fault and she won't feel sorry for me when I'm in a wheelchair. So you see, you're point of view is definately understandable....but, I'm glad you don't have people telling you the things that some say to me! Anyway, wishing you the best of luck and if you ever need anything or anyone to talk to, I'm here! You can join my new website at www.carecentral.com/providing-hope Hope to see you there! Good luck and take care!
Sincerely,
Keisha
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Is pain my fault?
karenmaya
Tuesday, April 15, 2008 at 10:14 PMKiesha, I just read your post and I have to add this! I have had RA diagnosis for a year and a half, and am doing a lot of physical therapy now. I have a friend who is a massage therapist and she does wonderful work on me too. She asks me how I feel, and then - and I know it is out of caring, but still - she tells me things she believes about how psychological pain is, and how we can control it and even cause it by our thought patterns. Now I am very familiar with mind/body issues, but COME ON - to say this to someone who is suffering? I think this can only come from someone who hasn't felt this kind of pain. Of course one's attitude has a role to play in well-being, but I felt this was so insensitive.
I wonder how many people are thinking, when we share our pain with them, that it is our fault. I think these days many people believe this.
replyre: Is pain my fault?
Anonymous
Sunday, August 17, 2008 at 07:53 AMHey, I don't have RA, my girlfriend has RA, but I do not. However, all the key models of pain have now progressed to suggest that some level of ones pain is psychological. THIS IS NOT TO SAY THAT IT IS NOT REAL. This is the key thing to state when one talks of the psychological dimensions; it is all very real.
I would also like to add that to say people who say this can't be living with chronic pain is just not a good thing to say. I have lived with chronic pain in my hip and legs for years, and I know the feeling of having to bite ones tongue to stop my self from screaming in every day situations.
Please don't discount biopsychosocial models of pain.
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Children
JJ
Wednesday, April 16, 2008 at 12:58 AMMy children are grown now and I get alot of off spurt things from my RA. Like Uveitis Rosecia, Osteoperosis, and I have degenerative RA along with Rheum RA. There are times that they {my children}make me feel like a hypercondriac because of needing to go get different meds. My son in law will make comments and he has no clue how bad they hurt. I wish like**** that I didn't have this *** disease. I am trying so hard to only go to the Dr when things get really bad ,but then it seems like they really get out of hand and it takes longer to try to get things settled back down. I have children in the medical field and so I have tried to ask them questions about my labs that come back all out of wack and they treat me like I am trying to make something out of nothing . They have no clue how a person feels and how scarey it is to always having something new flaringup that the doctors don't have an answer for.Like will I get my sight back in my eye, or when will the fire go away in my eye. You don't dare mention that around my kids or they say things like get the firehose moms eye is on fire. Sorry I just needed to release alot of saddness that has been buildingup for awhile.
replyre: Children
Hollybgroovin
Wednesday, April 16, 2008 at 01:10 AMPlease don't ever feel sorry for how you feel or needing to vent in regards to life with this disease! I know how you feel and I think a lot of us have been there. My family goes through extremes. Some of them either feel like it's not a big deal, and then some of them treat me like I am dying. No one knows your pain like you do. Sometimes that is the problem. It really stinks when you have to deal with an invisible disease! Keep your head up! I know it's hard especially when you desperately need the ones you love to really understand. But we are all here for you! Good luck and best wishes!
replyre: re: Children
JJ
Thursday, April 17, 2008 at 12:42 AMThank you!! In 18 years this is really the first I have had the chance to tell all. I always hold it inside because that is how my husband and I deal with things .We hold them in and then we don't have to really deal with them.If we dont talk about my Ra, then it is not there until it sticks it sick little head out and I have some sort of off spurt disease showup. Then we deal with it and thats it. No, how you feeling today, no, can I help you with something. To top it all off we farm!! I drive tractor, work cattle,calves all that fun stuff. So there are days I would like to say I just don't have the energy.I would like to stay in bed and rest ,but I know I have to keep on pushing , or I will sit down and curlup into aball and probably stay that way.I just wish I could find something to give me energy. I got a new grandchild awhile back. That truly is gift from God. I never knew being a grandparent would be so great. She makes me want to keep pushing, but there are days I have to remind myself.
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