File Under: But You Look Fine! | Arthritis Information
My parents are still quite oblivious to RA. It wouldn't matter as much, but we spend a lot of time with them and they are constantly wanting to know if the MTX has "worked" yet, asking about a third child, suggesting that I shouldn't worry, it will be all fine.
I went to a wedding with them last night. It turns out, one of their friends (55-60) (who has a daughter I grew up with) has RA, and has had it for 11 years. It was great to chat with her. She is on MTX and Enbrel. Sounds like she's had a long road, and is coping, but we discussed how overdoing it can mean you are wiped out for two days, etc.
So I told my parents about this. My dad's reaction was, "that's such great news! I never knew, and she looks great!"
I guess I should mirror his positivity and say "yay for modern medicine and learning to cope!" but instead I was just frustrated that he failed to understand that, while she may be coping and having a happy life, that doesn't mean that RA isn't a challenge.
I don't think they get the "uncurable" part of it!
Overall it's been a nice weekend, and I'm feeling positive, and optimistic, but I just had to rant a bit, to get it off my chest.
My wrist has been extra swollen, my ankle a bit better, shoulder a bit worse. My left elbow is hurting but I think its from where they took blood on Friday? My husband tried to pull me off the sofa by my elbow instead of wrist and I was surprised by the pain! Speaking of which, the nurse was not amused when I told her I haven't been taking my iron, so they prescribed a different kind. She was persistent about it so I'm thinking my last bloodwork showed I'd gotten even more anemic. I feel decent. Talking to my husband, we realize that I have fatigued so easily for years (even when I was in really good shape) and it's easier to deal with now, having some sort of explanation.
Sorry to ramble; hope everyone is having a nice weekend!
KatieG2008-05-25 18:58:17it sounds like your parents love you very much. they may not be as oblivious as you think but simply want to focus on the positive. by asking if the mtx is working yet they are acknowledging that you may still be feeling bad. Why don't you just talk to them and let them know that sometimes you just need them to say "ahh honey we know its been rough" before all that positive talk I know what you mean.
I met some people that I have not seen for a few years and they asked, "How you been"
"Fine except for getting
Rheumatoid Arthritis""Ah, the old Arthritis, I've got a bit of that"
For the next twenty minutes I listened to what they have been up to including all the aches and pains that age brings upon us.
At the end of it all I was exhausted trying to listen to what they had to say.
Never did get a chance to explain that what they were experiencing was a little bit different to what had befallen me.
Yep, know what ya mean. I have days that are really bad, and for the most part I don't much bother telling anyone I have Ra, it sometimes gets too exhausting explaining it and people usually do not "get it" anyway.
I agree, and I stated this in another post, I am fortunate for the new meds and technology and everything, especially since I have a great RD and he knows my case well........still, somedays it is difficult to cope with and I don't feel good at all.
Sure wished science would advance some more so that we would not have to go through all this.
Like we all say.....we have some good days and some bad days and then the rest of the time, well, it gets to be unbearable.
jode
I still don't think anyone save one friend who has FM knows what life is like with this illness. She's had it worse than me, so I don't have to tell her much. We can practically read each other's mind on the subject.
mab522008-05-25 20:01:46I sort of have the opposite problem. The people around me that know I have RA (I don't tell most people) seem to think I'm so fragile I'll snap like a twig if I get up to get my own cup of coffee. Some have a look of pity in their eye that embarrasses me. To look at me, like many of us, you wouldn't guess I had any physical problem. Pip's seen me, she can verify that. I know these people act this way because they care about me but geez. I wish I never had to tell anyone. It really makes me uncomfortable.My parents, especially my mother, are in a lot of denial. I think it is hard for them to accept that this RA thing isn't going to go away. They hate to see what I've gone through this past year since my diagnosis. It's been frustrating because I have had to convince them that I really do have RA. I used to get irritated because I felt like they questioned every decision I made regarding my care. The other thing happens that I really hate is when I describe a symptom to my mom, she'll say oh, I have that same thing. In the end though, I know that its just a coping mechanism for them. I have learned to find and take support where I can and try not to feel hurt when I don't get it from where I feel I should expect to find it...but that's not always easy.I have to keep everything secret from my mom because she is so easily upset over the smallest things. I wish I could depend on her like I did as a child but it seems the tables have turned now.
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