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Living With Facial Pain

Random Sunday night


#1

So it's 9pm on Sunday night and I'm sitting here waiting for my meds to kick in....sounds familiar?...lol.

I started new meds today, Baclofen, so I know it's highly unlikely it'll kick in anytime soon and I probably have days-wks to wait....but hope never dies right?

You know this disease....and I say disease instead of condition because it feels debilitating at times......really puts things in perspective. You learn who your true friends are, who's really important to you...whats's really important to you and what you're willing to give up from your life. And while that sounds depressing at times, it really isn't all the time. I joined this group on a night I was looking for support and I can't say how invaluable I've found it to be. I'm reading all these stories about other members and it's sooo familiar to me....it's amazing to know that a stranger from halfway across the world can know exactly how I am feeling and relate to me! And the stories that break my heart are the ones about the kids who have this terrible disease....how they get through it is really beyond me :(

I really like reading the stories of other people, good and bad because it's amazing to me how you all get through every day life with this....sometimes it seems impossible to me yet there are people who have it a lot worse than me and they do it. I guess that's why I wanted my name to be Just Keep Swimming, a good lesson in life because it's rarely a bed of roses...too many puns -_- I apologise ha ha

One day at a time right, or maybe for some of us, one hour at a time, or even one minute at a time. I don't think life is meant to be all bad so while this might be our curse and our cross to bear, there must a bright spot right? If not now then I guess it's waiting sometime in the future. Fingers crossed for that...


#2

Thank you so much for sharing. You have inspired me to start writing down my feelings via this blog forum…
Jaime


#3

Hi Jaime,

I just checked out your page and I saw you are new to here....my empathy and best wishes goes out to you! Thanks a lot for commenting, honestly sometimes you get so frustrated with this dreadful disease you just have to let it out you know! LOL

I think you definitely should write down your feelings, thoughts, opinions etc via this blog forum and I look forward to reading them :) This community has been such a comfort to me in dark times and I think you'll find it helps a lot when you need information, advice or just some comforting words from a stranger who understands :)