I too recently found the IAS, and I'm so thankful that I did! It's just so wonderful to talk to people who like me live with chronic pain who understand what it is like living with that pain day in day out. I also have come across insensitive doctors and nurses who thought I was being a baby, or suspected that I was unhappy in my marriage - and that to escape from it that I was constantly having myself admitted! A few years ago they told me to my face that it was all in my head and sent me to a psychiatrist. I tell you, I was so upset that NOBODY seemed to believe me, except for John my wonderful, supportive and loving husband! I cried bucket loads of tears, but one nurse took pity on me - I think she suspected that what I was indeed suffering from very severe pain, she sat me down and suggested that John and I go to the meeting which had been arranged with this psychiatrist - and that we just tell him the whole ugly truth, including that the doctors were refusing to take me serious. We did as she suggested, the talk lasted over 3 hours, and we unburdened ourselves (it felt so good to get some things off our chests, believe me!) and the end result was that the psychiatrist bluntly told the doctors that there was nothing wrong with me and that I was totally with it mentally - he put the suggestion to them that they change their attitude and do something about my pain. Hallelujah! After that I received a lot more sympathy. Although I still have a conflict with my Pain Specialist, he borders on such extremes - either he wants me on a very high dose of Methadone, or he wants me to take nothing at all, I'm to basically take it or leave it. When I explained to him over the phone on Monday that I wasn't coping at all, and that I had so much pain his only response was "Hang in there Kid!" I found it so insulting, for starters I'm no child, I'm 31 years old!
My specialist, who is a laproscopic surgeon, Mr Schroeder, is really supportive however, he knows me well, having had me under his care for the last eight years. He supports me in my goal to handle my illness from home, as I get a lot of bowel obstructions, for which ordinary people would have to be hospitalised, but I've been trhough it so many times, I know what to do, and I know when I need to admit that I'm in trouble and I'll go to Accident and Emergency when that time comes. The other reason I'm not keen to go into hospital is that it has begun to be impossible to find a vein to put an intravenous drip into, so now I have to have a central line put into my neck. And also in the past when I've been reassured that I'll only be hospitalised for a few days it's always turned into weeks, sometimes months. Plus so far I've had 14 operations, all in the last couple of years. My story and photo is on the quilt. The photo is not great, John wants to borrow a digital camera this weekend so he can take one of me when I'm not so sick, and in terrible pain, as well as running a fever!
What exacly is a koch pouch? (I had an ileostomy for several years, and have now got a "J pouch".)
I hope that you've been sleeping a bit better. I too have had a couple of sleepless nights, as my pain has been keeping me awake, but now I'm taking my pain meds more regularly I hope to get some quality sleep!
Look after yourself,
Greetings,
Linda Vermey (the Kiwi)
(Lin to my friends.)