On My Pain And Hers

When I created this blog, I told myself that it wasn't going to just be about RSD, but about my life in general. But isn't that rule perpetuating the reason why I want a blog? Because so many people told me they were tired of hearing about my RSD, and tired of me complaining? Also, when the pain of RSD and the thoughts of the conference are swirling in my head, I can not help but to talk about it.

This is the first night in a long time that I can remember actually getting out of bed because the pain was so bad. The trouble is, the pain is in my hands! So even as I write this, I am making the swelling and discomfort worse. And yet what else am I supposed to do? Sit on a chair watching tv everyday that my hands swell? If I did that I would be on the sitting and watching tv even more then I do now, and I just can't do that.

I have said it before and I will say it again. I want to live damn it. Not just sit and rot while I watch the pain and swelling in my body get worse and worse. And that is what would happen. For in RSD, doing to little can cause just as much pain as doing too much.

This is one of those times when learning to accept the RSD is so hard. For I know that some of the swelling and pain is a result of my studying for the GRE, sewing, typing on the computer and living life in general. It is very hard for me to accept that some of my pain is kind of my fault. Not my fault in the fact that I got RSD, but my fault that I am making it worse. And yet, isn't that what K. was talking about? That saying it is your fault is wrong and keeps you from living life to the fullest? I'm pretty sure I'm right about that.

I must comment on something. At the conference there was a mother and daughter who claimed the daughter has RSD. Yet then the mother said something very interesting. She claimed, and the daughter agreed, that the pain and swelling of RSD only lasts from the beginning of September till the beginning of February. And my first thought is that's not RSD. I hate to tell someone that there RSD is all in their head, because that is what doctors and care givers in general try to tell all people with RSD, but frankly I have never in my life heard of such a thing, and neither had all the people at the conference, including K. who has had the disease since he was just a teenager and is now in his forties! He's talked to literally thousands of people with the disease, and never had heard of that. And as my mother said, what happens from September to around February? School starts. Has this girl been trying to get out of school all the years that she has claimed to have RSD? Or is there something about school that is so emotionally painful for her that she starts suffering from the pain of RSD? Another thought crosses in my mind that from September to February fall and winter come on, and cold hurts more people then those with RSD. Maybe she has raynods or something of this nature?

Either way, the fact that she says she has RSD will ultimately make it harder for those of us who do have RSD to convince many doctors that the pain is not all in our head. Her mother claims that her pain literally turns off completely in February, and turns on completely in September. If her pain can turn on and off like that, doctors may tell us, why can't yours? The girl is able to go skiing in and do other things that I wouldn't dream of doing with my disease, not only because it would most likely make it worse, but because while doing it I'd be in extreme pain. What does this girl do, wait till it turns to 12am on February first and say "Now I can go outside and be normal"? Lucky her, I wish I was in her shoes. All I would have to do is say "three more months till February" or something like that, and feel better! The doctors wouldn't really have to treat her, because well, come February first, they wouldn't have to worry about it anymore!

Well, I didn't mean to talk about this girl in the entire blog, but the swelling in my hands and feet make me very pissed off that this girls pain, or the idea that she says she's in pain, just turns off come February pisses me off so bad that I could...well I don't know what I could do. I wouldn't want to punch the girl...at least not till February rolls around. Perhaps if there is a summer conference I will ask her how she is feeling, and if she says fine, tell her that it must be nice to have pain that just turns off like that.

God! I can't get this girl out of my head now! I can't get the picture of her happily skiing while the rest of us RSDers stay inside, hoping that one day the snow and cold of winter will let up just a little so that we might be able to see a friend or even get out of bed. It pisses me off to the highest degree that I have to sit here not knowing if I'll ever be free of RSD pain and she just counts the months! I have heard of girls who's pain goes into their stomachs who must spend months in the hospital trying to get enough morphine in their system just so they can go home and sleep in their own beds. I wonder what this girl thinks of us? Does she think we are making up our pain in the months when she doesn't have hers?

Well these thoughts are making me much too angry, and typing on here is indeed making my hands swell more, or at least my right hand, as that is the hand that was already swollen to an insane degree. I think I will sit down stairs and watch tv and try to forget about the girl who will go skiing in March. I now hear K. telling us that we don't always have to have the highest level of acceptance, and then I remember that so long as we don't act on our intolerances and keep them in our head, we are all better off. This is a good thing, because if I could act out on these thoughts I just might. Thank god she doesn't live near me. I wonder what would happen if she tried to contact Fighting "4" Us? I can't turn her away because she claims to be in just as much pain as me. Yet I wonder if her helping the organization, if she ever did, would stop in the months that her pain stops?

I've got to stop thinking about this. Perhaps I will watch tv...at least it's much more entertaining then this. Till next time, I hope I have better news for you dear blog. And if not, I will just write on, for that is my prerogative. Again till next time have a good life, and blessed be.