Three Doc Monty, Shame, and Speaking Up

November 7, 2012 at 12:18 pm (Living With Chronic Illness, Medical, The Journey Towards Diagnosis, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , )

Before I begin the whole story of my recent adventures in dermatology and infectious disease, I want to address one of the reasons it has taken me this long to write this entry. I have written about all sorts of medical problems and procedures – from abdominal surgery to uterine ablation – and although sometimes I get a little pang of “Maybe I should just keep this part to myself”, I never feel ashamed by the fact that I am chronically ill and/or need treatment. Maybe I feel like I wish I had a little more privacy, or that I could pick and choose who reads about what’s happening in my uterus, but never really shame.

When I started to write this entry, I found myself avoiding it. I’d find just about every reason in the book to do something else. It probably helped that I’ve found myself with a little bit of email drama that has been emotionally challenging, so every time I wanted to get out of writing this entry, I went back into my email and re-read some of the posts. But why? Why was I slacking from writing about an experience that was, in turns, funny and serious?

So I posted to Twitter about this odd feeling of shame I was having that I couldn’t figure out. It was my friend Stephanie who said that we are taught as children/teenagers that you can avoid all dermatological problems if you just keep yourself “clean”, and therefore someone who has a skin problem is “dirty”. And that hit the nail on the head for me; for some reason, I felt like I held blame for developing a skin condition, whereas I don’t feel I am responsible for needing a hernia surgery.

With that being said, and me being clear that I haven’t stopped being ashamed about it, but am blasting through it instead, here’s the wacky story of dermatological adventures.

You might remember back a few months ago when I wrote about seeing a great dermatologist named Dr. Lee. It’s worth noting that even in that entry, I mention that his office is in Damascus. I really liked him a lot, and so when I had an odd wound on my back that wasn’t healing right (and had been dismissed by another doctor, but more on that later), I decided I would go see him again to figure out what was going on.

Rave makes the majority of my doctor’s appointments. It’s one of those things I really hate about being chronically ill, the constant scheduling and paperwork and other inconveniences that come with seeing yet another doctor, so when I’m left to my own devices I walk around the house for months saying, “I really need to call and make an appointment.” To keep me from walking around my house to death, Rave helps me out by making appointments for me that magically just show up on my google calendar. It’s nice to have someone in my life who is actually willing to help with the parts of being chronically ill I hate the most.

So I told Rave to call Dr. Lee and see if we couldn’t get an emergency appointment.

Keep in mind, that I have seen (no exaggeration) more than 20 medical practitioners in the last five months or so, and that they’ve been located all over the area, from Washington DC to Baltimore, from Rockville to Frederick. So at times, it can be hard for anyone to keep track of which doctor has which specialty and where their offices are located. Add upon that, that several of my doctors have more than one office in the the area and so I’ve been seen in two locations for the same doctor, and it gets even more complicated.

Rave recalled that I was seen at a place that had Dermatology in the name, like “The Dermatology Center” or “The Center for Dermatology”. She also knew that when I saw him, it was pretty close to my house in Germantown. So she searched for “Dr. Lee, dermatology, Germantown” and got a hit for The Dermatology Center. However, that Dr. Lee is Dr. Joseph Lee, who doesn’t practice in the Germantown office. The Dr. Lee I had seen and loved back in June was Dr. David Lee, who practices at Dermatology and Surgery Skin Center in Damascus, which is about a fifteen minute drive from Germantown.

She called the Germantown office and told them about the situation and asked for an emergency appointment. They gave her one, in Bethesda, at 9am. As I am now living in Hagerstown, Google Maps mocks me with it’s estimated “1 hour and 10 minutes”; at rush hour going in the direction of rush, I’d have to leave here at somewhere around 6 or 7am to make sure I got there on time. Not to mention that the friend who was taking me was driving up from Sterling, VA, so she’d have to leave at something like 4. I thanked Rave but told her to cancel the appointment, as 9am in Bethesda is not doable.

She calls the next day and they tell her I can be seen that day at 3pm. Rave calls my friend Rebecca (who was a trooper!), who jumps in the car and heads in my direction. The first hiccup is that lately, between having a cold and being on 50-80% bed rest means that I usually sleep pretty late. What happened on my end is that I woke up, looked at the huge number of missed calls and text messages, and pieced together that I had about ten minutes to get my ass in gear and be downstairs waiting for Rebecca. This is somewhat difficult for Dels, but somehow I pulled it off.

We start to exit Hagerstown, which has a preponderance of very narrow streets. As we were trying to navigate our way out of town, someone opens their door into our lane and clips the side mirror. Luckily, no one was hurt and the other car didn’t have any noticeable damage, and the other driver was much more concerned with our well being than trying to pick a fight.

I honestly don’t remember when I realized we were going to Germantown and that Dr. Lee’s office was…somewhere else. I couldn’t, for the life of me, remember what town it was in. My best guess was Olney, as I remembered it being in a town I don’t visit often. Maybe it was Frederick? I think in my head I assumed that maybe Dr. Lee had another office in Germantown I didn’t know about, so I didn’t think too hard about it.

When we arrived at the office, they had no record of me at all. No patient records, no appointment. I take several deep breaths, and tell them repeatedly that I had seen Dr. Lee in…Frederick? Olney? The receptionist tells me he doesn’t have offices there. I’m trying to rack my brain to figure out where it was, and at the same time plead with the receptionist that we had gone to great trouble to be here, so could I please be seen? They finally agree to let me see the doctor, and I had to quickly fill out all the new patient information stuff I hate so much.

So now, a little background on why I needed to see a dermatologist at all. About a month or maybe a little longer ago, a strange wound showed up on my back. At first, it just looked like a red, raised stripe. It didn’t bother me at all, so I basically wrote it off to a scratch or pressure wound or something else that would heal on it’s own. It got bigger, and deeper, and more infected looking, until I found myself in a great amount of pain when I tried to sleep on my side or back, and I am a dedicated side sleeper.

I had an appointment coming up with an infectious disease nurse, to take out my PICC line. While I was there, I mentioned I had this wound on my back that was becoming much more bothersome, and she took a look. As it happens, ID and Derm share space at this clinic, so she brought two dermatologists over to take a look. Almost immediately, they agree it looks like HSV or shingles. They take a sample to test and send me on my way.

I go back for a follow up, and this time they have me being seen by a doctor (I needed clearance from ID to proceed with my plans for surgery). She was the queen bitch of all bitchy doctors I have ever been to, bar none. I mean, Dr. WLS was an asshole, but at least most of the time he was trying to appear nice. She didn’t want to be there, she didn’t want to see me, she wanted to spend the least amount of time possible around me, and she made that all readily apparent.

She informs me that the tests were negative. I tell her it’s gotten deeper, more painful, and more productive. She takes a glance – and I really mean a glance – and says, “Well, it looks like it’s healing now, so nothing to be done.”

I go home and I know she’s full of shit, but I decide to wait a week or two and see if she’s right. Absolutely not. At this point it has become so painful I cannot lay down unless I have a lidoderm patch on it, and now there is a big ulcer at the top of the stripe and the stripe is widening and more red/productive.

So this is where the Dr. Lee/Dr. Lee circus joins the story. In fact, I see Dr. Yu, and he is very concerned that this could be MRSA. He takes a culture and prescribes both an anti-fungal and an antibiotic cream that I have to put on twice a day. (Luckily, I can reach where it is so I can do this without help.) Rave and I notice that within two or three days on the creams, it is looking much better. It’s still red and productive, but less so.

Finally, after no less than six rounds of phone tag, I finally got to talk to the nurse at Dr. Yu’s office (in Germantown, for those playing the home game) and she informs me that it’s Streptococcus, and that he’s adding an oral antibiotic for ten days, and to call him if it doesn’t get better.

My research with Dr. Wikipedia has me confused, though. Although strep can produce several different kinds of skin lesions (including Necrotizing Fasciitis, which is otherwise known as “flesh eating bacteria”, but my thing doesn’t look like that at all) I can’t seem to find one that looks or acts like what I have. The closest I’ve come is possibly Ecthyma, although I don’t think my lesion is quite that deep. Although Impetigo is also caused by strep, and the grouchy old man in me would love to whine about his impetigo, it looks and acts nothing like that either.

So I’ve decided to stop playing Dr. Wikipedia and just take my meds like a good patient and see what happens. However, now that I knew that I had an infection when I saw that ID doc at Johns Hopkins, I wrote the following letter to the head of her department.

I apologize if this is the incorrect email address to use for this purpose, but I would humbly ask for your help in getting this message to the right recipient.

My legal name is [not yet Del Tashlin]. My DOB is [numbers].

I was seen by Geeta Sood in the ID clinic at Bayview on October 4, 2012 at 2pm. This was a follow up appointment after being seen by Karen Daniels.

It was clear from the moment she walked in the room that Dr. Sood had not read my chart and did not know why I was there. She was rude, curt, and completely unhelpful. She finally acquiesced and left the room for over 20 minutes to read my chart, and when she returned she was incredibly short with me and dismissive.

She actually said, upon her ending the appointment, “I hope I never see you again.” while shaking my hand and the hand of the person I brought with me.

She made medical mistakes that have created further issues for me. I had a wound tested for hsv and varicella. Those tests were negative, and although I reported the wound had grown, and was incredibly painful, she took one short look at it and declared, “Well, it looks like it’s healing, so nothing to be done there.” I have since been diagnosed with a strep infection, which if it had been caught earlier would have meant less aggressive and easier treatment. But since it was clear that Dr. Sood wanted to spend the bare minimum amount of time with me, it was completely overlooked.

Also, she prescribed a course of Ioniazid for my inactive TB, with absolutely no plans to follow me to monitor for liver issues. She was rude when I asked what symptoms should worry me/send me to the ER, and was completely dismissive of my concern that since I manifest many of those symptoms already I wouldn’t know the difference between my everyday experience and hepatits or other liver infections. She just retorted, “You’d know.” As she had never seen me before, she dismissed me trying to explain that I suffer from chronic nausea, vomiting, and lack of appetite (which, if she had read my chart and seen that I had lost 40 lbs in less than three months, she would have known), and also have dark urine and muscle/joint pain on a regular basis. It was only when I filled the prescription and read the materials did I realize that I need to contact a doctor for monthly liver panels. This was not even mentioned to me by Dr. Sood at all.

Overall, I had an incredibly negative experience with her, and now that I know that I have had an infection for over a month that she could have treated if she had just shown any interest in my welfare at all, I feel strongly that I need to report her negligence to someone in a position to see that she reads this, and at least it be added to her HR file.

If I don’t hear back from someone at Johns Hopkins in one month’s time, I will have no other option than to file a complaint with the Maryland Board of Physicians. This is not my intent, but I feel very strongly that her conduct was more than unprofessional and rude, but negligent. I would rather see her be dealt with inside of the structure of Johns Hopkins (which I have had stellar experiences with, save the ID department) than have to go to such measures.

Thank for your time reading this, and helping me to find the correct place for this to go. Please feel free to respond to me via this email address.

Thanks again,
[Del, who has stopped taking shit from shitty doctors]

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10 Comments

  1. EVCelt said,

    Wow, I had missed most of the story about that doctor (I think I just got the short form about her dismissing your back wound.

    Your letter seems to strike the right tone to me…

  2. Del said,

    In good news, within half an hour of sending that email, I received a response telling me it was being forwarded to her supervisor, and I would be hearing back shortly. He even added that he recognizes that the JH structure is hard to navigate but that I was pretty close to right as to where to send it.

    I will post another comment when I hear more, unless it turns into something worthy of its own post.

  3. Michael Gillen said,

    I feel like you might be the only one that understands, but I’ve been having doctor’s problems as well. I don’t have insurance, so I’m going to a clinic at a reduced rate. Long story short, there are two doctors there, and one of them was AWFUL. My therapist kept trying to find a way for me to switch, but it was almost impossible (she looked at my meds and found that many weren’t for my condition, and they were either far below a therapeutic dose or way above what it should be). I tried canceling my appointments with her to see the other doctor, but she would cancel the appointments I made and demand I stay with her. Eventually I threw down the gauntlet; I told her that I was tired of her bullying me and that I didn’t want to stay with her anymore. She declared I was suicidal and was going to call the cops to have me put away. Since I don’t have insurance, I can’t afford that (least of all, since I wasn’t suicidal). So, after arguing some more, I left. Thankfully the clinic just had my old address, because my mother got a knock on the door from cops looking for me because the doctor had called and told them that I my ROOMMATE WAS FEARING FOR HIS LIFE and that they needed to find me right away (so, which was I: suicidal or homicidal?). My mom actually didn’t know my new address, so they couldn’t find me, thankfully.

    Upon hearing this, my roommate, Josh (who, of course, is my boyfriend, as the doctor knew, but if you’re going to lie, lie a lot). It was the first time they had talked, ever. The doctor divulged detailed information about my treatment, massively violating doctor-patient confidentiality (nothing he didn’t know, but still). She tried to manipulate him to give our address, but Josh, thankfully, saw through it.

    He called to complain, but, her supervisor stuck with my doctor. From my point of view, it looks like she was horribly offended that I dared to question her treatment, and was trying to do whatever she could to get her revenge.

    Sometimes, medical professionals suck.

    • Del said,

      Michael:

      I very highly suggest you find out who the licensing board is in NY and file a complaint. This is beyond a doctor being kind of a dick or somewhat negligent and borders on illegality. It doesn’t cost you but a stamp to register a complaint , and those complaints are taking very seriously.

      Another thing you can do is go to all of those “peer review” sites, like Angie’s List, and have a one-to-two paragraph summation on why no one should ever go there, ever. Post it to your Facebook with the doctor’s full legal name and the name of the practice, so it will come up in google searches, Do everything you can to get the word out that no one should go to that clinic or see that doctor.

      Finally, if you can get your therapist to testify in court that you were getting this kind of treatment, you may have a real, serious claim for malpractice. Most lawyers will give you a free consultation, and will take your case in exchange for a percentage of whatever damages are awarded.

      If you want or need more advice on how to deal with this, rather than just forget about it, please email me. Obviously I have some experience with this kind of shit.

  4. Elizabeth said,

    ARGH for your recent annoyances. Good on your for reporting Dr. Hopeless, though. I hope it actually makes a difference, both for you and for others who get assigned to her.

  5. Tracy Rydzy, MSW, LSW said,

    Wow amazon letter. So sorry you had to deal with all that but go You! I hate impatient doctors and in have written such letters about bad nurses and doctors because they think they are above getting in trouble because they have an MD or RN and many times they need to be put in their place and reminded that patients need to be listened to! Go you!

  6. Heather S said,

    You have my sympathies. I recently fired a doc for trivializing my health issues, then I spent some quality time yelling at my HMO and explaining to them that they could find me a competent physician to coordinate my care or I could get litigious. Behold! I have a much more competent PCP now.

    People do not realize how much time and energy it takes to be sick.

  7. Wendy said,

    Oooh, that letter is so sharp I could cut myself. I love it. Good for you for doing it – who knows how many other people she may have bullied who aren’t able to stick up for themselves!

    Totally understand the shame around skin issues. I worked looooong hours when I got my first tattoo, so I’d clean it at the bathroom at work. Except they lied when they said our products were antibacterial, coz I got impetego ALL OVER MY ABDOMEN. Thank fully I caught it quick, got it treated, and it didn’t damage the tattoo. But it *hurt* and I felt ashamed because impetego is something filthy children get at summer camp.

    • Del said,

      See, my association with impetigo is old people compliaing about it as one of their many aches and pains. I grew up poor in a middle-to-lower class school, and I never knew anyone who had it (at least that I knew about). It’s somehow not a comfort that strep skin infections are fairly rote; everyone has strep on their skin no matter how fasciduous they are about washing their hands/taking showers.

      As for the letter, it has been my learned experience that bad and/or rude doctors never get reported to anyone. Most people’s knee jerk response is just to go to another doctor. I am planning on writing a letter about Dr. Ruth Jacobs, who was a homophobe and gave me a completely inappropriate and factually incorrect lecture on safer sex (or more apt, how it is a myth) when I told her I have sex with people of many genders. I won’t repeat what she said when I informed her that some of my partners were neither male nor female. (I wrote about this before, about how I found out she is involved with http://www.notmyshower.org, a hate site that tries to block legislation that allows trans* and gender non+normative people access to gendered public accomodations, like bathrooms and changing rooms.)

      • Amy said,

        Impetigo is actually a fairly common skin infection even in “clean” people. There are all sorts of naturally occurring bacteria on our skin, that are harmless when there are no open spots, but all it takes is a lowered immune response or illness combined with a cut, and it can lead to an infection. J has had it on his feet where his toenail was ingrown (gross, I know, but still, the man showers twice a day, you don’t really get any cleaner).

        I’m glad you are getting it taken care of… and I am thinking of you, as I know since you posted this you have gone back to the hospital.

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