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Sunday, July 08, 2007

Peep Holes

Before I get into the main topic of this post, I want to express my frustration and my admiration at the family of birds in this little house. I assume it's a family although I guess it could be one speedy bird. Every time I walk out my kitchen door, a little bird seems to be zipping back into the house or out of it. I've tried many times to get a picture of it but it's always too fast for me. I can stand there and wait for its little head to pop out of the peep hole for as long as I can stand it but it doesn't move until I do and the minute I put my camera down it zooms out to the tree where it eats berries, or that's what I assume. It's far too small to photograph once it's in the tree. Although I am frustrated in my photographic efforts, I admire the bird's speed as well as its caution. It's a dangerous world out there.
As I mentioned in a prior post, I have recently become addicted to medblogs although I'm making a concentrated effort to read a book I started before this addiction. I'm also trying to write in a paper journal before I completely lose my long hand skill, not that those skills have ever been that great. I have been doing poorly with my latest effort to motivate myself to keep up with my walking. I'm not able to get going early enough to beat the heat. I was talking to a friend recently and we decided that we will have to go for a museum walk soon. Beats the hell out of mall walking but trying to walk fast around a museum is pretty hard. So many paintings to be distracted by.I have recently become aware of the risks of eavesdropping which is adding to my current instinct that I need to get away from my computer. I have been drawn to the medblogs in part for the humor. Also, as someone who has ended up seeing many doctors on a regular basis, because I have stage III melanoma and have had a myriad of issues following my groin lymph node dissection; it is interesting to read about the points of view from doctors, nurses, and med students perspectives. I've always been interested in universal health care and how to deliver modern medicine across economic lines crops up on some of these medblogs, so that is of interest to me. I'm also interested in people in general so once I started reading blogs that weren't only written by people I have gotten to know through a melanoma support group, I realized there are blogs on almost any topic under the sun with people writing them who come from a variety of fields and interests. I tend to read for the human stories as much as I do for topics. People in the health care field tend to have a lot of human stories although they have to fictionalize them to avoid infringing on privacy issues.Back to the eavesdropping issues. It was expressed well and humorously by a lawyer who is addicted to medblogs. She says in the description of her site: It is as though someone has drilled peep holes into the walls of emergency rooms, operating rooms and doctors' offices. I can't look away. I know exactly what she means as that's what it seems like to me too. I've also been drawn in by the people. If I'm not, I generally don't read them as there as so many to choose from. However, I generally care about people and am pretty empathetic so it would be easy for me to spend too much time reading blogs. The problem with eavesdropping on medblogs is so many of the issues are ones that overlap into a world I wish I didn't spend so much time in. For example, the minute I wrote that sentence I thought about one of my favorite medbloggers who is weary of the standard patient one liner: I hate to go to doctors. That would be very annoying to be in a field where you are trying to help someone and have them tell you how much they hate being there. I don't think I've ever told a doctor that I hate going to the doctors but I'm sure I've implied as much.The hot button issue for me is pain management although that's not generally the issue being discussed. Many of the medbloggers I've started reading work in emergency medicine. I had no idea until I started reading their blogs what a big problem is created in the ER by patients with addictions who visit the ER to obtain drugs. Apparently this is a huge issue and many of the doctors discuss it. My first personal experience with the caution doctors have to take in prescribing pain meds was actually a statement the NP at my surgical ONCs made. I had severe nerve pain after my groin dissection which intensified after my hospital stay. I had been better and my post surgery recovery was on target when I had pretty rough symptoms which interfered with my ability to walk or do anything. I still had the surgical drain in at that point. When I went in to see my doctor and the NP handled the script, she said it was legitimate for me to need pain meds for a longer period of time. Say what. To me by saying it was legitimate inferred that the reverse could also be true in some cases. I wasn't really prepared for that line of thinking and it took me aback. It wasn't a big deal but it certainly registered in my head.After that initial problem, things moved along pretty well. Within a few weeks, I didn't have any pain which ibuprofen couldn't handle, and after 9 long weeks and 2 injections to dry me out the dreaded drain could finally come out. The problem was as I became more active and started jogging, I began to get worse, not better. At first my doctor thought I was overdoing the exercise which seemed reasonable but it kept getting worse even when I slowed down with the exercise. By that time, I decided to try and white knuckle it. I was even fearful of masking what was going on with too much ibuprofen because my instinct was that something was seriously wrong with me. When I couldn't avoid getting it checked out any longer and started down a long string of appointments with specialists, I assumed that the melanoma was back because I didn't know what the doctors knew. Some people have chronic pain after a lymph node dissection, particularly a groin one, according to oncology journals I've since read. The scan to ease my mind didn't help since the radiologists imaged a mass that was "consistent with a tumor recurrence". Thankfully later scans got better and all I was left with was chronic pain. At this point, two years later, in addition to regular check ups with a dermatologist, surgical oncologist and medical oncologist, I am followed by a pain specialist and rheumatologist. I have also seen a neurologist and for that matter my pain specialist is in his practice and is also a general neurologist himself. I have been tested out the whazoos but chronic pain is the most consistent issue through all of this. So my little ears definitely get rather large when the medbloggers seem to use chronic pain and addiction interchangeably. I get it. They are mostly talking about people showing up in ER primarily to get meds with long stories and aggressive behavior. I've been lucky in that the only times I've had to go to an ER has been an imminent emergency and I've gotten whisked off for care and admitted fast. It's been decades since I've had an ER visit. What sent me down this increasingly long babble was reading a quite sensitive, serious piece, by a medblogger about how ER doctors aren't trained how to deal with addicts/chronic pain in a way that might help the patient. The point was that the patients need referrals to treatment programs and the doctors needed to address the issue if possible. It was well written and thoughtful but I immediately cued in to a commenter that mentioned a palliative care doctor had said that some of the warning signs for addictive behavior are also signs of under treatment of pain. I'll admit that I had wondered about that myself in reading some of the medbloggers discussing theses issues.One of the reasons I cued into all of this and projected it back on my own life, besides the fact that I'm as narcissist as the next guy, is that a warning flag for doctors in dealing with patients who have chronic pain is something called double doctoring. I guess I'm covered there because I told my pain specialist, up front, when asked to sign the standard contract saying I wouldn't get pain meds from other doctors; that I was a cancer patient and that if I had a recurrence my oncologist might have to prescribe meds after surgery, etc. He blew me off by saying, you know that's not what this means. Well, no I don't. I am very legalistic in certain regards and I want everything spelled out. The first time another doctor prescribe different meds was when I had a fast growing atypical lipoma on my back which must have been irritating nerves because after my surgical oncologist removed it, the significantly worsening pain improved. Prior to that surgery my PCP changed my scripts short term because she was concerned about my liver with all the tylenol that I was taking. She let the pain doc know about the changes she made and after the surgery I let the pain doc know I had a short term script for post operative pain from my ONC.
Zipping ahead to the present, at my last appointment with the medical oncologist who is the most recent addition to my string of doctors, he changed my scripts because he was worried about my liver with all the tylenol that I was again taking, as certain issues have gotten worse. He said he'd let the pain doc know about the change and when I need a re-fill, I should call the pain doc. I was already dreading calling the pain doc's office mostly because he already knew how much tylenol that I take, if he has looked at the list his nurse takes down at each appointment, and he hasn't ever addressed this issue himself. I have no idea how he'll feel about being superseded by my medical ONC. Then I start reading about double doctoring on the medblogs and all the red flags which doctors look for. Let's just say that's a peep hole that probably should be closed off to me. I can drive myself a little nuts as it is.Part of my frustration is I have done everything I know to do to avoid having a problem. I was frankly worried about long term pain management. Everybody knows about 5 people, not to mention the celebrity cases, who need pain management for a legitimate reason but later end up with a problem. For that reason I have read about this field pretty extensively to try to avoid having a problem. One common denominator that I've noticed is that it seems like the vast majority of people who have a problem with pain meds are also drinking alcohol. For that reason, I decided not to drink except on special occasions until I stopped needing pain meds. Last year I drank wine at my great grandmother's wake, mine and Bill's birthday, Thanksgiving, Christmas, and my daughter's birthday. That was it because I feel like once I start making exceptions for family beach weekends (my latest temptation that I didn't give in to) I might end up drinking more than I should given my pain management situation. The interesting thing to me is I've never had a doctor tell me not to drink while taking the scripts I'm on. There are warning labels on the meds themselves but the doctors haven't addressed this issue with me.The literature I've read suggests that there isn't much danger of people becoming addicted to pain meds as long as they only take enough to treat the pain and if they don't combine it with alcohol. Apparently the way alcohol works is that it can alter how your brain processes the meds (yeppers I'm no doctor and that isn't a good explanation). The trickier part with chronic pain is taking the least possible amount to treat the pain. I never take more than is prescribed and I'm rarely without some level of pain even with the meds so I'm pretty sure I'm safe there. However, I am careful. I also worry about masking pain so much that if I do have a recurrence, I won't recognize new issues. I think in that regard I have to assume with all the doctors I see and my regular PET/CT scans that any recurrence would be seen before it's symptomatic anyway. The point of this long babble is I think, if I continue my new addiction to medblogs, that I should walk, not run, in the other direction when the caustic wits and sensitive pieces as well start tearing into chronic pain/addiction and use those two words almost interchangeably.

4 comments:

King (Kathie) said...

Carver,

You are NOT an addict!!! You are a person in chronic pain who needs some of the same meds that people with addictions take. There is a huge difference. I was an ER nurse for many years and know all the pain med seeking behavior.
Don't be so hard on yourself - you are NOT guilty.
Take care.

Stay Strong
King (Kathie)

Kim said...

Wow! I was behind on Carverblog reading...I love the way you revamped your format...it looks great. You make far too conscious an effort in controlling the pain you have to ever become addicted. If you don't control pain, it WILL control you.
Who is the boss after all? Remember those docs work for you.
Love, K.
Questions are never indiscreet: answers sometimes are.
-Oscar Wilde

Medblog Addict said...

Hey, are you talking about me? Thanks for stopping by my blog. I love your photographs. As soon as things get a little less hectic at work, I am going to come back and read some more. But right now, I am going to check out that live bear thing I saw on your blogroll. Take care.--MA

Carver said...

Hi Medblog Addict,

I am guilty as charged. Your blog totally cracks me up, especially as someone who has recently become a medblog addict myself. Your blog is also a good place for me to jump off into the medblogs because your list is so comprehensive. Plus you give me good lines to tease my daughter the law student with. Wow, little did you know the public service you provide. Hope you enjoy the bear cam. I have great fun there. Cheers, Carver.

Kathie and Kim, Thank you so much for the support. I'm feeling more level about things. It never occurred to me to answer comments in the comment section before but I've noticed that's something other bloggers do so I didn't want to reply to one and not another. I hope everyone knows how much their support has meant to me. I probably won't reply in the comment section very often because I'm long winded enough as it is but I always appreciate the comments.
Take care, Carver