I went to my Rheumy yesterday and chatted about Enbrel and the concerns I had. Yes she did talk about the increased risks, but hastened to add that as auto-immune system disease sufferers we are at an increased risk of things like lymphoma anyway. While there all I could think about was how was I going to feel better, how and when was I going to get a day without pain. I can't remember what that is like. I also have a lot of spinal involvement and is why I am being offered such an expensive med. Unfortunately the hospital pharmacy did not have any Enbrel in stock. Four and a half hours at the hospital for nothing. lol So what did I do to console myself. I had my tea and decided to go to the rock concert I had so longingly wanted to go to. I drove 70 miles from my home to the Limelight Club in Crewe, Cheshire. I left home at 6.30 pm and arrived home, my wife waiting up for me at 12.45am. I went on my Jack, Billy no mates. LOL LOL LOL My best mate phoned my while I was sat at the end of the bar, he's got a long standing problem with alcohol, he's been blind drunk for the past seven days. I felt a sad, sad man, sat at a bar 70 miles from home on my own. OMG, I did enjoy my self. I haven't been so reckless in years, (so punk rock). It took me back to my teenage years. Bob Catley, what a voice, what a singer, what a showman, absolutely brilliant. As for my mate, he's phoned me this morning, apparently I inspired him to get himself out of his bed of self pity, to have a shave and to sober up. So some good came out of the night. He said he would have jumped at the chance to go with me even though it is not his type of music, but to be honest I just did not think about anyone but myself, my own indulgence. I first saw him as singer in Magnum in 1980, if anything his voice has matured and got better with age, like a fine wine. Had the hospital had the Enbrel I surely would not have gone. It will be in stock by Friday and my next post will probably after I have had my first shot. There I was, sat at the back sipping water no alcohol I was driving, come to think of it, I've never been to a rock concert and not had any alcohol before, being fully immersed in my music, 1980's NWOBHM. Sheer joy, some mid-life crisis I suppose. LOL LOL. As you can guess I can't keep the smile off my face, but I know I am going to suffer later. Best song of the night was an acoustic version of Magnum's "Days of No Trust", absolutely phenomenal, which all the people on my other Yahoo group, Magnum Fans, are raving about and trying to get hold of a copy. So if anyone wants to know why Enbrel? It is because I want the chance to be pain free, to have a life, to be reckless, to play football (the beautiful game) with my Grand-children, to be a husband to my wife, she's had more than her fair share to put up with, to be ME more like I used to be. PS Zoella, did you feel my thoughts and prayers. Keep the light shining, Ian. - I just wanted you to know that I have been on Enbrel for 5 years. When I went on it I was told I could expect to lose the use of my hands within 3 months if I didn't. It has completely saved my life. I was a life long guitarist myself. The drug has been a miracle for me. Although I am not quit what I once was, I can play guitar again even to the point of the occasional gig or session. My now 10 year old daughter will remember me as a musician and I am able to participate in her sports. She's a starting pitcher on a local rec softball team and just finished a season of GS basketball. Right now I am back in college to amend my degree to become a history teacher so I can work without stressing my hands. All of this is after Enbrel probably prevented my eventual suicide. There are some risks. There are always some risks. But if you are a highly responsive to the drug like I was it will change your life. I have also been able to reduce the injections to a maintenance dose every 2 weeks at this point. By the way, I used to live in Harrow outside of London and hang out around Covent Garden in the 80s. I'm in San Diego, CA now. Cheers Ronnie E. --------- As I read these posts, I go through an emotional roller coaster of my own. Reading Jayson's account of how life is so difficult breaks my heart. Jayson, I wish for you the strength and patience to let time do it's thing and bring about positive change in your life. My roller coaster dates back a few years, where I've experienced a lot of loss and stress. All around the same time, one of my best friends suffered from and died of cancer, leaving behind an 18 year old daughter on her own. My aging mother was hospitalized and on the verge of death for weeks (luckily recovered), I got diagnosed with PA after years of confusion and fear, and at the same time, my marriage of 21 years ended. I have two teenage sons - don't have to describe the challenge and drain of that. We have no other family to speak of, as my parents were both holocaust survivors and no relatives survived. I used to have a close group of friends since my teen years, but they have dropped out of my life and one of them is involved with my ex-husband. I'm trying to build new friendships and find support, but it takes time. I cry a lot, especially when the PA flares and it feels like I can't manage all that I've got on my plate. Other times, when things look more promising, or when I read posts like this, I am encouraged and inspired and understand that time is the key and change can come about. Ronnie, I live in LA and am trying to find solutions to my new financial challenges. I'm wondering how you're going about retraining to teach, as I've considered transitioning from graphic design to teaching, but am afraid that here in southern Calif. it's not enough to live on. I'm interested in your feedback and any advice you might have. I don't often write in, but I read everyone's posts religiously and am thankful for this forum. |
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