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Showing content with the highest reputation on 03/13/2018 in all areas

  1. 1 point
    jon019

    Having pain downplayed

    Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling..... Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... Best Jon
  2. 1 point
    Dylan the potato

    Having pain downplayed

    It definitely is not easy talking with people but it is nice when they at least try to understand. It is really nice to actually talk to people on the issue. Thank you so much for the kind words
  3. 1 point
    MattBE

    Having pain downplayed

    Welcome Dylan, sorry that you have to be here but we are here for you. In my case, it's less difficult than in other countries to find people who understand our pain and emotional/social suffering. There is a clusterhead with untreatable CH in my county, he has appeared quite a lot on the news and this helps all the clusterheads in my county, we can just refer, sadly, to this guy and most people know him. Even tough, most people just see it as severe migrains and will never understand until they feel it. I turn mostly to my girl when I'm at my worst. I have started to open up to my family lately and showing them what living with CH is really like. They try really hard to understand. If you can treat it, with O2, D3, triptans etc there's still "living" besides surviving the clusters. I was diagnosed with CH when I was 19, after having it for 2 years. Failed school etc. 6 years later I went back and now I just finished my university college and started to work as a paralegal. I have a very understanding employer who also gets benefits from the state for hiring me (the state pays part of my social burden and extras when I can't work because of the clusters). It isn't easy talking to people , let alone an employer. But there are people who understand. Hiding the pain and side effects from meds is nearly impossible, talking about it to people who really care for you is the first step. People who don't understand after you show them what this pain does, who don't want to, are not worth your time. I just let them talk don't listen. (picture monkey with instrument in homer simpsons head ) just knot and don't let it get to you. Hope this helps a bit, if not, we find some comfort in each other, here in this forum
  4. 1 point
    shadawnb

    The Jesus Shot

    I am so sorry to intrude on this forum, but when I was researching this "Jesus" shot for my dad, I stumbled across this forum and was the clincher for me to tell him "go for it." So I wanted to tell you his results. He has suffered with chronic debilitating back pain for approximately 17 years. Weather... overworking.... standing on his feet, etc.... all of these would knock him down for a couple of days afterwards. If he spent all day at my son's baseball tournament, the next two days he would be in a recliner in severe pain, but he did it anyway. He had this shot ten days ago. He has been pain free since then! He spent the following weekend after the injection at a tournament and was able to stand and talk to our friends. Yesterday, he spent all day in the saddle or at the barn walking a horse that was colicking, two hours at the vet, and then came home and played catcher for my son to pitch. NO PROBLEMS! I'm in tears at the change in him! My uncle went Monday who has suffered with severe migraines that leave him bedridden. Yesterday's report was he has been pain free since then. I wanted to give these testimonies in case someone was like me... searching for answers to this shot. It has truly changed not only my dad's life but even his family's life with him being pain free for the first time in years. He often said "the only way I will be pain free is when I'm dead." He had no idea he'd be able to have quality of life again on this side of the dirt! Thank you for letting me tell his story. Shadawn
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