If you read my post yesterday, about Carol Brady, you know that I was attempting to make a real point and be funny in the process. Maybe I was, maybe not. The sad part of that for me, is that due to my pain, not only can I not be a “Carol Brady” sort of mom, but some days I find that I can’t even be a regular old half-assed mom and I need my kids to take care of me, instead of me taking care of them. Today is one of those days and there is nothing more painful for me as a mother, to know that it is that way. I want to start by being very clear, that my relating my story is in no way an attempt to elicit sympathy, just understanding. A friend of mine from college recently read my post about my pain condition and its origins. In a very kindhearted attempt to help me, he forwarded it to another college peer that is now a surgeon. What follows here is the response that that doctor wrote.
“she should have undergone vein graft bypass by a serious vascular surgeon
with release of the Arcuate Ligament as her inital surgery.
now she is a chronic pain patient and the likelihood of an easy fix is near 0″
I am having trouble wrapping my brain around the numerous ways that the above 2 sentences infuriate me. In order for you to understand, I need to give you more information about what I have gone through since my description of my condition in the letter to my doctors in my post of April 24, 2009 called “My Very Own Special Pain.” That letter was written about a year and a half after my initial surgery. Since the surgery, I had been trying to manage my pain through medications. That worked pretty well until last fall when things seemed to take a turn for the worse. It’s hard for me to describe in what way, exactly, just to say that my pain seemed less controllable and I had more difficulty managing it. Also, I began having more and more days that I really wasn’t able to function normally (a very difficult situation for a mother of 3 or anyone for that matter). I spent many days laying down in bed on ice packs or a heating pad and feeling like I was letting my children down. For anyone who doesn’t suffer from chronic pain, I need to tell you that it is depressing, isolating, disappointing and infuriating. People see you from the outside and you appear fine so they don’t understand that you are truly suffering. You also get tired of talking about your pain and you feel as though people are likewise tired of hearing about it.
I have read that chronic pain actually can change a person’s brain chemistry. So can pain medication. With most pain medications, people develop a tolerance to it, meaning that it takes more and more to achieve the same level of relief that was previously achieved with less. Also, people develop a dependence, meaning that a person cannot abruptly stop taking their medicine without experiencing very difficult withdrawal symptoms. Let me be very clear. Pain patients become dependent, not addicted. And there is such a stigma in our society around taking pain medicine that many people are reluctant to admit that they do. For addicts, pain medicine is equated with recreational drug abuse. For chronic pain patients, pain medication is a life saver, but it is accompanied with the problems I just discussed. For me, I am so careful about keeping my usage to a minimum, that often I ration my medicine and live in an ongoing state of pain or I feel like I am on a roller coaster each day. I take my medicine when my pain reaches about a 5 on a pain scale, but before I know it, it has jumped up to an 8, an unbearable point. It usually takes about 45 minutes to work and some days only last about an hour to an hour and a half so I go from extreme pain to some relief up and down all day long.
When my condition seemed to worsen and I was having more difficulty managing it, I realized that I needed to become more aggressive about finding the root of my problem and addressing it. I happened to be talking with a friend and she asked me if it was possible that the pain was due to scar tissue that developed after my surgery. I didn’t know so I googled “pain from scar tissue.” I came up with hundreds of hits for the word “adhesions.” Adhesions are fibrous bands of scar tissue that develop in response to trauma, infection, surgery or radiation. Please note that when I told my doctors of my ongoing pain after my surgery, not one of them mentioned adhesions. Adhesions form in 90+% of people who have abdominal or pelvic surgery and 60+% of those people develop complications from those adhesions. Adhesions can connect internal organs to each other, can squeeze arteries, reducing blood flow, pinch nerves and cause intestinal obstruction which can be a life threatening condition. At this point in time, adhesions can neither be prevented nor treated through conventional means. Only when they cause severe conditions will doctors even deal with them. They don’t show up on any imaging such as x-rays, C-T scans or MRI’s. They can generally only be found through exploratory surgery and the only widely accepted treatment for them is more surgery to literally cut the adhesions. You can see where this is going. Yes, the surgery that treats the condition, leads to more adhesion development-an unending cycle so most doctors won’t even perform the surgery. Also, based on my experience, many doctors are reluctant to even discuss adhesions.
So, I started doing research on alternative methods of treating adhesions and I came upon a website that claimed to be able to treat them through manual physical therapy. I filled out a lengthy online questionaire, without too much hope and submitted it to them. A day or so later I got a phone call from a woman who knew exactly what I was feeling for she had been there herself and she, with her husband, 2 physical therapists, developed their technique. I was skeptical and hopeless and worried because this treatment was going to cost a lot of money because my insurance wouldn’t pay for it. I told my son of my concerns and asked him, “what if it doesn’t work?” He replied, wise beyond his years, “but mom, what if it does?” Right then, I booked a flight to Florida (I live in California), booked a room at a hotel and scheduled a week of intensive treatment-4 hours a day for 5 days of deep body work. I was filled with dread about leaving my family for so long, but felt that I had no choice but to go. I decided to wrap my brain around the idea that it would be like a vacation, that I would read and relax and enjoy some peace and quiet. Only thing was, I didn’t want a vacation, I just wanted to feel well. As it turned out, I was unable to read at all and each day when I returned to my hotel room, I turned on the t.v. It didn’t matter what was on. I just needed the noise.
For anyone who has ever had massage work, this is like rolfing. It was painful and left me feeling crappy each day, but I could feel the adhesions release. I knew the treatment was working.
This post is turning out to be much longer than I anticipated, so for today…
nufced (to be continued)…