Mail (July, 1998)

Rejection & When the Dr. DOESN'T Know Best
from Shawn

Dear Ed: One of my many hangups is FEELINGS OF REJECTION. I am not quite sure how you conduct your replies or if you respond to all or only some of your incoming email. I have read through numerous items on your home page to find out but, I just don't know. My question is did you receive the last email I sent you? There was a problem with sending that particular day. How can I talk with others who have Psoriasis and Psoriatic Arthritis? I have never been able to share with anyone who truly understands this condition. I appreciate your help and your wit.

Here's something you might want to share or maybe you already have, but a few months ago I had my 5th liver biopsy and I am thankful that I knew the procedure because I think I saved my own life. It was actually during my recovery time afterwards when the problem occurred. Usually, immediately after the procedure, I have always been told to lie on my side while pressure was applied with a rolled up towel. This time they acted like I didn't have to do that and didn't say a word to me. As I lay there hooked up to a blood pressure reader that automatically took my pressure at 10 minute intervals, I noticed the pressure was continuing to drop and I was beginning to feel a little uneasy. I thought surely they knew what was going on and I am not the kind to whine about things. But finally I realized after hearing the nurse try to contact the Dr. and saying that she was becoming concerned ... By the way the Dr. never came back to check on me—too busy!!!) ... I realized that I needed to do something. I had mentioned to the nurse earlier about the towel thing and when she came back, I asked her if she was sure I didn't need to apply pressure. She thought it was strange that the Dr. didn't seem to think it was necessary, so, I just told her to get me a towel, NOW. Wouldn't you know it, my blood pressure began to rise ... and I was able to finally leave. Just for the record, before the procedure my pressure read 138/97. It got down to 42/67. I believe we have to know as much as possible to just survive the stuff they do to us. Bleeding to death is not an option, thank You. Thanks, -Shawn

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Ed's Response: Shawn, as you know, your initial correspondence did end up in last month's MAIL section. But you have prompted me to add an explanation in my COPYRIGHT and DISCLAIMER section to clarify my "policy." Also, I'll iterate here so people don't have to "click away" right now.

I read all my e-mail as I get it, but rarely respond immediately to the sender. Also, because of my declared policy (published here under COPYRIGHT and DISCLAIMER), I feel free to "publish" or "mount" on this web site any e-mail I receive unless the sender tells me specifically NOT to. I do not publish full names or e-mail addresses unless the sender says, specifically, IT'S OKAY (and, even then, sometimes I won't). Any e-mail I receive that "tells a story" about living with psoriasis is highly likely to get posted here. The exceptions are reports on well-known treatment regimens that yielded no unexpected results (good or bad). For example, not all the mail I receive that says, "This-or-that worked for awhile but stopped working" gets posted. We all know that's the case with EVERY current treatment regimen. Obviously, if I'm pressed for time, I will favor stories that are humorous, or dramatic, or both. Your account of the liver biopsy experience most definitely qualified as dramatic!

How can you talk to others who have psoriasis or psoriatic arthritis? On the Internet, you can try the newsgroup. You may also contact the National Psoriasis Foundation for information about their psoriasis network groups and pen-pals network. (Go to OTHER PLACES here for links to both the newsgroup and NPF.)

Thankfully, little of the bad advice we psoriatics get can have the extreme consequences you experienced after your liver biopsy. Nevertheless, the lesson you learned is pertinent. We will probably never know why your doctor wasn't proactive about the posture, towel, and application of pressure following the procedure. Nor is it likely you could ever "bust" your doctor for his negligence. Since you went ahead and did it yourself, how can you prove what might have happened if you hadn't? There is a comparable, but less sensational, situation that occurs all too often between psoriatics and their derms: The derm prescribes useless regimens. They don't always make our P worse, but they cost us money and time with no good result.

For those of us who have had P for many years, this is always a possibility when we go to a new derm; but it happens, too, when a derm we've been seeing for some time loses track of what he or she has prescribed in the past. But here's the kicker: It's always as much our fault as it is the derm's! We live with our disease, and we should bear the responsibility of keeping up with its history. Psoriatics can save a lot of time and money if they keep a record of what they've tried and how it works. And then we should never feel reluctant to tell a derm, "Been there. Tried that." Make the derm tell US why it's worth our time and money to try it—again. My experience has been that, most of the time, the derm will go, "Oh. Okay. Let's try something else."

Thanks for goosing me into being more explicit about my e-mail "policy," Shawn. And thanks for being proactive enough after your liver biopsy to hang around with us for a good while longer! -Ed

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