Friday, August 08, 2008

Veteran Patient Gripes

A long, long time ago I used to date a doctor. Now, I know that he has this blog address and so does my husband, who are not one and the same, so I won't divulge more info than that. It was the first shocking revelation when he admitted to me that he sometimes dreaded seeing his patients. The second shocking revelation was that one time he met an 80 year old patient with perfect (and preserved?) breasts. None of those tidbits made me think any less of him, but they intrigued me.

Before then, I hadn't thought one way or another about how doctors feel about their patients, or that they would notice something about them other than being a patient. Of course, that was very naive.

During my second pregnancy I knew something was quite not right with me. During my extended tour of bedrest I searched for answers. I hadn't found blogs yet, but discovered an old listserv archive with many writings from a doctor formatted in a Q&A style.

At some point during my long and ongoing illness it occurred to me that it might be a fault of my own for not getting answers for my ailment. Maybe I wasn't communicating properly? In the end, I found medical blogs and plenty of information on how NOT to approach doctors. It was eye-opening. I quickly learned that nurses, doctors and even pharmacists are greatly annoyed with their clients. Some of the posts were vicious and full of hatred, even. I made it my priority to see things from their side of the equation, with the hopes of better rapport & problem-solving my illness with my doctors and their staff.

But I haven't really seen a patient's perspective laid out bare. As a frequent-flyer in the medical community I have lots to share. :)

~ Impromptu GYN exams are not a welcome surprise. During a visit to a new 'specialist' a discussion of my odd pigmentation came up. I have weird pigment spots all over my body, mostly concentrated to my lips, eyelids, ears and a whole rash of them around my genital area. It never crossed my mind that I'd be asked to drop my pants and show them on the spot. Uh, traumatized? Table for one! YIKES.

~ Either you want me to be smart, or you don't. I always have problems talking to doctors. My mind goes so fast sometimes that I can't put my thoughts together. Intelligence of the rambling sort doesn't mean I am dumb or that I am trying to be annoying. I have resorted to writing a checklist to refer to during our visit. I'm also afraid of annoying you with my lists. Sorry.

~ Know when you are out of your realm. One time I got into a stand-up, fists clenched argument with an "Endocrinologist" that didn't understand the nuances of secondary hypothyroididm. "Those ranges are there for a reason! That's why we use them!", said he as he angrily poked his finger at the lab results sheet. Uh, said I; "Those ranges are there for reference on the common form of the disease hypothyroidism. Central Hypothyroidism requires careful interpretation of the entire set of results. Hormones work on a feedback system and are influenced by one another as they are a feedback system, not just standalone entities. If you exam them carefully it'll show you the source of the deficiency. Do you want to interpret the nuances of a complex hormonal system, or just be an accountant? Because then maybe Diabetes might be your forte." {He was fired, from me. Gladly I'm sure :)~]

~ I have small children at home, so if they aren't with me I don't mind waiting when you are late seeing patients because no one is screaming or climbing on me. No apologies necessary. And I don't even need a magazine, the quiet white room with the reclined exam bed will do just fine for some r&r. I have the baby sitter a few more hours, do you want to skip me and catch up on some other patients first? :)

~ I don't want to tell you what pain meds I have taken in the past. I know that Fentanyl, Fioricet and Percocet et al raise your eyebrows. Personally, I enjoy being able to poop. Trust that I won't ask for narcotics unless I really do need them.

~ As a chronic patient, I know that my history is long and confusing. I prefer you ask me what those weird meds are that I take, because I might not be taking them for what you think they are for. Cytomel is an odd little thyroid drug and not prescribed often, Ketoconazole is an anti-fungal but also shuts down your adrenal system, DHEA replacement is sometimes necessary when your adrenals don't work right. The Topamax I used to take for migraines and seizures, but if I could stand the tingling fingers and being dumb as a rock, I'd hop back onto it so I can fit into a smaller size. The effortless weightloss was awesome.

I have so many symptoms and so many meds, heck it is hard to know what symptoms are even relevant. I'm not playing games and hiding any of them, I swear. Lead me with some questions if you suspect something. I have symptoms that don't even register with me, kinda like how I keep forgetting to have those cataracts checked ~ time flies when you are sick ~ or why I haven't followed up on my high urinary protein levels. I have bigger fish to fry while I try to stamp out the source of my excessive cortisol production. If I don't keep on track and get the underlying source fixed, we can both sit back and be amazed at how much more can go terribly wrong.

~ Don't prescribe Effexor unless you have to. Just throw those damn 'free' samples away because it is impossible to get off of that stuff, Which is somewhat of the point from Wyeth's marketing point of view. Yes, I take Effexor but only because I can't stop taking the damn stuff and weaning is a joke when you have two small kids and an absent husband... unless you like walking around with waves of electric shocks in your head and feeling the whole room spin when you barely move your eyes. Consider the long-term impact, people. Can I go to rehab for Effexor? Because I might need to. That panicky feeling they were medicating was resolved on proper thyroid medication. *rolleyes* All I can say is while I am stuck on 150mg XR is that I am really, really not depressed. ;) Just apathetic, which is not the same thing.

~ I managed to gain 75 pounds in one year. Giving me advice on exercise isn't going to help. My body is hurting and tired for a reason. My feet hurt to the point of tears, all of my joints hurt sporadically & spontaneously and I fight like crazy to stay awake between the hours of 11am and 2pm. My body is desperately trying to get someone to listen, or at least force me off my feet to rest. No one in their right mind can gain 75 pounds in a YEAR. I can't imagine what I'd have to eat to pull that off, like DUDE, on purpose. I feel tired and weak because I am. My husband broke my sternum just giving me a hug for heaven's sakes. Two days ago I stood up from the couch and broke a rib. *faint* I wonder what a trip to the gym could really do for me.

~ Don't like the health insurance system? Then break out on your own and go back to being a physician.

That is what my favorite doctor does. I pay him, he gives me a 'superbill' to submit to my insurance company. I am fine with that. I don't want $10 co-pay visits. I want results with someone that focuses on their practice and not the billing. I'd like to communicate follow-ups via email. It's no problem for us, as it is included in his initial fee - and if we need more followup emails, I'm happy to pay to further our discussion to make a plan of action. That's what I need.

Maybe adopting this type of service, upfront, and patient self-reimbursement would lighten up the moods out there, because it seems to me that doctoring isn't as happy and gratifying as it used to be. That makes me sad. Not that my thoughts matter on the whole, but because I know that you went to school, med school and survived residency and deserve to do what you do well without a heap of crap piled on it.


Kristin said...


My heart goes out to you - with all of the struggles you've had with Cushing's disease. It's just not fair...
I was diagnosed with Cushing's syndrome last Nov. and began my own journey with Cushing's. I found your blog shortly after I was diagnosed. It both scared the crap out of me and gave me hope.
There's no absolute cure for all types of Cushing's and that's a frightening reality. So what do we do? Share with others and continue to make ourselves heard.
Your blog inspired me to share my journey with Cushing's. Thank you for sharing your journey with all of us - you are an inspiration.


Anonymous said...

I think you need to go to medical school, Lisa.

Effexor Prescription Medication said...

My name is Judith Haven and i would like to show you my personal experience with Effexor.

I am 37 years old. Have been on Effexor for at least 1 years now. As soon as I was on the beginning dose I could feel releave from my anxiety. My family life is so much better. My kids notice it. They applaud my for taking the side affects for a better live with them. No explosive episode any more.

I have experienced some of these side effects-
Nightsweats, I have twitches if I forget a dose.

I hope this information will be useful to others,
Judith Haven

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