Advance Notice: This is absolutely the most boring blog post yet and I make an oath that next time I’m discussing Duck Dynasty only as well as my dislike for the Kardashian family. Period.
I met with Dr. J this week. He’s a specialist. It generally takes months to see him but through, what I like to consider, divine providence, the MG (Mean German and quite frankly you’ll just have to read prior entries to get the full oomph of why we call her that) got me in within the week because as we know you do not mess with a MG.
He was all that I had hoped him not to be and more. I had heard that it’s difficult to get into the auto-immune club and frankly I have better chances getting into Harvard or even wearing the green jacket signifying that I’ve won a certain amount of golf championships than I do getting into his club if he’s the gatekeeper. There was no way he was going to let me be a pledge. No way in hell. Even if I had agreed to run across the cancer or Parkinson’s disease frat or sorority house naked and half drunk he just wasn’t going to do it. You see, from what I’ve read on various blogs and forums they like to keep their club’s numbers down. Statistics show that the number of people being diagnosed with auto-immune diseases has skyrocketed within the last decade but for some reason the rheumatology community (doctors who specialize in auto immune diseases) is very very leery to allow you to be in their club and would rather you go away (or more like be wheeled away because you can’t even walk you’re so impaired) until you can perhaps crawl back using what little strength you have left, barely breathing and then they they will embrace you with open arms. ”You have now proved yourself true. Come into our arms. Oh, actually, let us get down on the ground because we see that you can’t actually get off of it.”
Granted, this is my perspective based on my interaction with Dr. J as well as a number of blogs and forums I have read from sufferers around the country who then go on for second or third opinions with actual doctors who they first verify have a beating heart and they then get the help they need. I’d love for you to tell me stories you or your family have had with doctors whose hearts have been cut out prior to them entering the room with you. No really, I want to hear them because I can’t be the only one who wants to charge them for my valuable time.
“Ok Doctor, here’s the deal, if you strike me as an idiot or if by the end of this first visit we determine that my ACT score was higher than yours, I remember more stages of mitosis than you do or you don’t even remotely try to validate that I feel like sh** then I not only want my copay back but I am going to double it? Does that sound fair because it does to me. Additionally, if you look at me like I am taking up valuable time that you could be using on the golf-course while you bill me $280.00 for your precious 30 minutes because you’re a ‘specialist’ then I’m going to charge you an equal amount because I’m a ‘specialist’ as well. I’m a specialist at knowing who’s a tool of a doctor. Kapeesh?
So I wanted to rant about why I didn’t like Dr. J and why I want to admonish others to advocate for their own health. Back in the day when I was young and the liver spot on my cheek was just a dot waiting to make it’s appearance on the stage of life, I was 13 and reading Freud’s ‘Interpretation of Dreams‘. Primarily because I was an uber-nerd but also because I had dreams of becoming a psychologist, I’d wander around asking anyone about what they had dreamt about last night and then using my trusty diagnostic manual (Freud’s book), I’d give them the low-down about what that really meant. ”Oh, you dreamt that your mother was riding an elephant to the grocery store? Well, it’s obvious you want to kill your father and marry your mother because you secretly love her. I’m sorry to have to break it to you like that but at least now you know the truth. Have fun in 6th period.”
And I’m pretty sure from there it just got worse as I love the psych field as well as the medical field and found myself volunteering at the psych hospital when I was 14 (and no, this is not typical but my Aunt was a psych nurse so I would go with her on her weekend shifts). I end up graduating in Psychology but also work as a medical clerk at LDS hospital and on my lunch breaks I do what most closet nerds do- I read the latest issue of JAMA (The Journal of the American Medical Association). I worked in the clinic with all of the physicians that were coming from the University of Utah and frankly what I saw pissed me off. Certainly there were some outstanding young doctors but by and large, they were just like you and me except they were able to pass their calculus class. Well…except that’s where they weren’t like me. I had thought about trying to go to med school several times but frankly, I can barely add 2 + 2. My geometry skills are par, my pre-calculus skills are uuuhhhhh, and the only reason I got a C+ in Algebra 3/4/5 is because of Mark Lockman and a really stupid teacher. And yet, isn’t it funny that when the kids need help with their Geometry I can NOW get the answers RIGHT? What the crap is THAT ALL ABOUT?
Frankly, I’m calling Mr. Whitman from 9th grade and I want a re-do on my tests because I’m sure I could do better than a B-/C+. For all of you out there that are wondering how smart doctors are, I’d like you to rest at ease. While I worked at the clinic, (and this is no lie nor exaggeration) I asked EVERY ONE of them what their ACT scores were as well as their grades in high school. Granted, I worked in the clinic in 1997 and I’m aware that competition is much different these days so you can assume that doctors older than this are just dumber (well really, can’t you?). In 1997, the physicians that I worked with that were in their 3rd and 4th year of residency and had ACT scores of between 25-29. Their high school GPA was between 3.7-4.0. When they had no clue what was wrong with a patient they would congregate in the backroom with their pocket reference manual and look up stuff. And then the savvy nurses would give them pointers. I’ll tell you what’s wrong with this picture. Under those qualifications, I should have been a doctor and then, at least, I could be taken seriously now. I have a friend, Dr. Baker (shout out to Amber) who fairly recently graduated from PA school and the minimum qualifications to enter school are incredible. Doctors these days who are entering school are expected to be five notches above what they were ten and twenty years ago.
Two weeks ago when I had the fortunate experience of being at the emergency room and having Tatum Channing’s doppledanger as my ER physician, I was astounded at his knowledge. First, he looked 17. Second, he was the first physician that even had heard of POTS (my first diagnosis that has to do with my heart not working correctly if I stand up) who is not a cardiologist. Third, well…duh..I won’t even say it but I’ll tell you that it ended up in Mr. Card telling me that I was fawning over my doctor and batting my eyelashes and I told Mr. Card that my eyes were just dry and that’s why I was blinking a lot. Which is true as documented by my cracked corneas so there Mr. Card. I only have eyes for you- cracked ones at that. I attribute it to the fact that these young bucks are charged with having to ‘know their stuff’ because the white coats aka Dr. J are hanging out on the golf course resting on their five iron and their laurels.
Let me get to the core of this problem and how it may pertain to your life and not just my pity party. I know enough about how my body should run to know that something is not running properly. When Dr. J calls me and says “I don’t think you have sjogren’s” I can say with firmness (also being friendly) “well I think you are wrong and here is why…
*This is kinda- mostly-ish-fairly verbatim:
“From what you discussed with me the other day, it is apparent that you don’t believe there is any legitimacy in any lab that is run by labcorp, is that correct?” (He also thinks it’s just coincidence that I can’t breath, have cracked corneas and can’t walk and no, I’m not joking.)
“Well, yes, that is true. I don’t think their labs are sensitive enough.” In his defense, he did say more but frankly, I have no desire to write it, he let me know that you can’t have sjogren’s if you have a negative ANA even if you have a positive SSA which is frankly not true but I won’t bore you more than I have…
“Ok, so I am aware that he ANA lab run by ARUP was negative although both ANA labs run by two different testing facilities of labcorp were positive but that is beside the point right now. You also ran the SSA correct and even by your ARUP standard it is positive, is that true?”
“Yes that is true but if your ANA is negative, it doesn’t really matter if your SSA is positive because you see, the ANA is like finding out of there is a car in the garage and if there is no car in the garage then it wouldn’t matter what make and model it was and the criteria for being diagnosed with sjogren’s would include a mucosal biopsy and frankly, if you insisted on having one I am fairly certain it would come back negative and it would be an inconvenience of your time and money.”
“I’ve already had the biopsy and it was positive.”
“No you haven’t.”
“Yes I have. Dr. Sondheimer did it and you should have the results. I know he sent them to you. Remember, I told you I had one the other day when we had our appointment? I told you it was positive for inflammation.”
“You must be mistaken, you haven’t had a mucosal biopsy.”
“Oh, I think I have. He cut open my lip and actually I was having a bit of insomnia this morning and was reading a bit from Rheumatology today, that is your organizations monthly magazine and there is a new diagnostic criteria from which sjogren’s is diagnosed and there are three criteria that need to be met. A person needs to have two out of the three. They need to have a positive SSA or SSB or a positive RA factor or a positive lip biopsy or a lacrimal tear stain with a certain number. And I meet all three. I shared with you the information about my cracked corneas and let you know I had the information about the tear stains, you should already have the biopsy regarding my lip and even by your own ARUP labs as well as both Labcorps facilities my SSA antibodies are elevated as well. I know it’s a moot point because you don’t trust Labcorp but my GP also ran additional tests and several more came back abnormal.
“Well see, that’s the problem with people who go seeking for information on the internet….”
“Dr. J, in my line of work I try to help people and when I believe in them I will move heaven and hell to help them and I would imagine it is somewhat the same in your industry. I don’t believe that you have a vested interest in helping me because I don’t believe you believe in me and if you don’t believe in me then you won’t help me find out what is wrong. It doesn’t seem a coincidence to me that my corneas are cracked, I can’t breath, I can barely walk, my lip biopsy is positive, my mouth is dry and my SSA levels are raised but you seem to still think that I don’t have an auto-immune issue. If you can’t get behind me and my cause then it would make sense that we need to part our ways and I can find a doctor who wants to help me.”
(Probably not the thing to say to a proud white coat but I’m sick of white coats)
“Well Julie, I think you are being a bit harsh. I’ve spent a great deal of time on your file today and had a long conversation with Dr. Timmons (my primary care physician) letting her know the route I think you should take. I just don’t think that your path leads you down the road of rheumatology. You’re entitled to get a different opinion but I think you are going to be highly disappointed….”
blah blah blah. He didn’t have my chart in front of him. He couldn’t’ say what any of my labs were, he didn’t validate any of the past labs. I wished him well and our paths parted. About an hour later I got a notice on my email that I had a new post from MY CHART which is the University of Utah’s system that gives you updates on when labs and tests post to your account. I had to laugh my pathetic new smokers hack kinda laugh because ironically it was my pathology report of my lip biopsy. As fate would have it, it was done by ARUP, Lab of the Most High, and even if Dr. J hadn’t gotten the preliminary copy, I know that the official copy is sent to him because I had requested it and in case you are wondering… I did indeed have a mucosal biopsy and yes, it showed all it needed to show. It tested positive for the number of lymphocytes I need to have for the disease he says I don’t have as well as atrophy of the tissue. More than that, it tested positive for something more important. It tested positive for “Julie, I know I was right and I wasn’t going to back down even though he has his MD.”
I know this has been long winded but the point being, we’ve got to become educated about what our medical right and responsibilities are. When is the last time you understood what your lab results meant? When is the last time you got a copy of what was in your medical file?
There were actual ERRORS in my chart. And not just one. Or two. Or three.. I just transferred to the U of U and there are ERRORS- it was news to me that I have Inflammatory Bowell Disease or have had a tumor in my bone. No wonder I feel so horrible ….;)
Food for thought: If we don’t take responsibility for our health, then people like Dr. J will, is that what you want? Dessert for thought- who wants to go to medical school with me because this is getting ridiculous…. (Is anyone out there a math tutor?)