"Mark it down." That's what my friend JoAnna told me to do about today. And so that's what I'm doing...with this blog post.
I don't know if I even mentioned it in my blog (for my own sanity, I had to stop talking so much about what avenues I was pursuing about this pain. Plus, I was beginning to look a little insane), but a couple of weeks ago, after the first failed surgeon appointment during which I was told I had pulled muscles, I had a bit of a meltdown. My mom and brother had to come over. They, along with Tim, had to convince me that we WOULD get this figured out. My mom told me that we would make an appointment with a surgeon, a woman, who has operated on her. Her specialty is bariatric surgery, but she's also a general surgeon. And, did you notice that...she's a SHE. I really felt like a female would listen more to me.
She did. My appointment was today, and mom went with me. Like I have said previously, after I went to Florida, I gave up on the idea of getting this fixed for Eugene. So I went into the office very calmly, as I no longer have that "race against the clock" feel. We didn't have to wait long. I remembered Dr. Rosemarie Jones from my mom's surgeries, and I remembered that I really liked her. She remembered my mom as soon as she walked in. They hugged and reminisced, and then she asked me to explain what was going on.
So I did what I have done forty thousand times thus far...I explained my pain. I told her when it started, what it felt like, what made it better, and what made it worse. I was cautious about telling her about my running, because my experience so far has been that when they hear runner, and particularly a long distance runner, they automatically assume it's muscular. I think I started by saying that it was made worse with "weight bearing exercise" and "anything involving gravity." I then told her everything I've been through, that most of my tests are normal, and how they keep telling me it's muscular. She raised her eyebrow and shook her head. I trusted her.
So I mentioned that it's terribly worse when I run, and that it's majorly affecting my quality of life. I told her how I saw the NP last week, and how I found out that I did have pelvic inflammatory disease, but that it's asymptomatic (as far as pelvic pain) and that the antibiotics she put me on have helped a LOT. She said "Sounds like Fitz-Hugh-Curtis Syndrome." In my mind, I was saying "Yes! YES IT DOES!" I found FHC Syndrome online the day before I went to see the NP. The NP had never heard of it, but she read about it and agreed that it seemed to fit. Dr. Jones said that they used to see a lot more cases of FHC given that physicians didn't used to prescribe antibiotics so readily. However, as medicine modernized, women were treated much more promptly and the syndrome was now rare.
She examined me, and I told her how lifting and doing sit ups does NOT make it worse. "Then it can't be muscular," she said. Exactly. EXACTLY, MY FRIENDS! She had me lie down and do a bit of a crunch. She said "Does the pain get better or worse with that?" It gets better--always has. Any time I tense my abdominals or bear down, the pain lessens. When I run, and the pain comes on intensely, my body just naturally has me bear down...just like pushing when having a baby...and the pain lessens. I told her this. "Well, that's a hallmark sign of adhesions. When you bear down, it causes the adhesions to shorten due to the pressure change, and the pain subsides. That's why breathing makes them worse, because it lengthens them." I explained that I have told EVERY single doctor I have seen about that, as I've always found it bizarre and significant. I also told her how holding it helps, and she agreed that makes sense with adhesions.
So, she said "At the minimum, I think we need to do a scope. A laproscopy, where we take a look in there. And I'll get rid of those adhesions." I wanted to jump up and down. Finally, someone who believes me. I just kept talking about all I'd been through. I told her what the other surgeon said. I told her they told me I'd never be fixed. She just smiled and shook her head. She found the way that I've been treated absolutely inexcusable. She explained that so many doctors rely way too much on imaging studies and never listen to the patient. This is what has happened to me--my imaging studies are normal, so it must be muscular. I told her that I had my muscles LENGTHENED by a robot and that that actually made the pain worse. I've told everyone else that, too, and they still say it's muscular.
Except for Michele, the NP, the others have also ignored the fact that I've had persistent night sweats and unintentional weight loss. I weigh just under 114 pounds--the lightest of my adult life. Lighter than when I ran 80 miles a week. And I'm eating. It just falls off, and has been over the past few months. Obviously, that's not normal, nor are the night sweats. When I mentioned to Dr. L about the weight loss, he said "That's from running too much." But what they don't ask is, "Do you usually lose that much weight when you're running only 60 miles a week as your peak?" Because the answer is no, not at all. Night sweats and unintentional weight loss are signs of an underlying infection.
So Dr. Jones said "When can we do this surgery? I can do it tomorrow morning. I'll work you in." I told her about my race on Sunday. She looked at the calendar and said "You can run on a marathon on Sunday even if I do the surgery tomorrow. That way the adhesion pain will be gone for your race, and you'll just have incision soreness." You do not know how tempted I was to say "Yes." I almost did. But...I just can't do that. What if something went wrong? What if I got an infection? I can't put my race at risk like that--not one that I've worked so hard to even get to. I just wished that I had seen her earlier.
She asked when I return from Oregon, and I told her Monday. "What time do you land? I could fit you in that day." I don't get in til 5:30. Unfortunately, she only operates on Mondays and Wednesdays, and so I'm having to wait until May 9 (unless there's a cancellation on the Wednesday before). But that's fine. Perfect, actually. I'll run the race, recover a bit, and go in for surgery. The only thing is, Dances with Dirt is the Saturday after. She said "Oh, you can run it. You'll just be a little sore." I love this woman.
Of course, if I can't run DWD, that's okay. It's not a goal race, it's just fun. But I think I'll be able to do it. So, mom and I left....elated. So you might wonder, if it's an infection, and the antibiotics are making me feel SO much better (they are...I sit here and am not even thinking about the pain), why do I need surgery. Well, when the infection spreads up to the liver, it causes a localized peritonitis there, which can lead to adhesions. While the antibiotics get rid of the inflammation, they don't get rid of the adhesions. I think I'm feeling better because the tissue that's being pulled on is not nearly as inflamed. If she goes in and there are no adhesions (meaning all my pain was from the inflammation), that's fine with me. But somebody's GOT to look in there. And she agrees. If there are no residual adhesions, fine. But I'm kinda guessing there will be, as I'm still in pain (just much less) with the antibiotics.
Oh, and she couldn't believe I run in a TENS unit. She was even more shocked when she heard I've run in two at once.
Anyway, I've been praying that I would be led to a person--that one person--who can help me. I was today. She can't wait to help me, and she asked for the names of all the doctors who have misdiagnosed and mistreated (as in prescribing the wrong therapies) me. She's going to fax them pictures of the adhesions she finds, as well as the dictated report. It was funny to watch how satisfied she was already feeling about that prospect.
Now, let me just say this: I don't think that any of the physicians I have actually SEEN have purposefully mistreated me. Dr. Spier comes to mind. He was the GI doctor who listened to everything I said. He just couldn't figure it out, but he desperately wanted to help me. Drs. Kaeser and Russell also really listened to me and tried to help me. But why didn't Dr. Stowell, the very competent OBGYN, at least suspect this? He told me that it couldn't be a GYN problem. It totally is. Everything I read about FHC says "a syndrome to suspect in women with right upper quadrant pain for whom imaging tests are normal." HELLO! And Dr. L, who has been treating this pain for months. When none of the usual treatments worked, why didn't he question the diagnosis? As a nurse, if I try an intervention for a patient, and it doesn't work--I don't just keep using it over and over. And I try to figure out the real etiology of the problem. The first surgeon I saw, Dr. Haddad (who is a very, very competent surgeon, and the rest of the doctors are competent as well), completely blew me off when I mentioned adhesions. "From what?" he said. Dr. Jones listened to ME. She was not focused on my test results or my history, but my symptoms. What a concept.
I dropped mom off at her house and drove home. And it was, at that point, that I began to weep. Honestly--not crying, not tearing up, but weeping. In a way that I have done very few times in my life. This time, it was out of relief. Finally, this hell is coming to an end. I had all but resigned myself to living in pain, to running--one of my favorite things in the world--in pain and always with my TENS unit. I thought my days of racing all out were completely over. Now, there is hope. There has been hope before--I thought the robot would probably work. But this time, I'm actually feeling a lot better. The symptoms fit, there is evidence of infection--I know we've figured it out. This saga, which I never intended to become the focus of this blog, is ending.
The blog will continue, of course. I only hope I can convince you to stick around.
Now. Onto running. I ran 4...yes, only 4...miles this afternoon. And I'm still feeling off. Running does NOT feel easy. I just feel uncomfortable. Like I'm working. Like I want it to be over. I'm telling you, during my last long run of my peak week..in the HEAT...I felt far better than this. Tim says it is normal. Well, if it's normal, it's cruel. Because I'm freaking out. I officially hate taper, but boy I'm happy today. Red letter day, indeed.