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Chronic Snarkopoloist: Look for Unicorns: What Do Doctors REALLY Want?
Have you ever wanted to just grab a doctor by the scrubs and say, “WHAT? WHAT DO YOU WANT? WHAT WILL MAKE THIS EASIER FOR THE TWO OF US?” This column is prompted by the most frustrating set of blog posts, texts, and teary calls I could have received this week. And it was MY MOVING WEEK. I should have been the one calling YOU. I just got here. I’m not even unpacked. I just found my deodorant in a nearly empty box with one vampire smut novel, one can opener, and an empty zip lock baggie. I mean – THIS IS MY TIME FOR CHAOS. I wanted to complain about MY WOE TO YOU.
Meanwhile – I’m frustrated. I’m done, I’m over the disconnect between doctors and patients who aren’t communicating and all this healthcare fuckkery. I’ve read article after article where doctors and surgeons think that GREAT COMMUNICATION happened while the patient thought it was the worst conversation of their lives. What is happening? Why is this happening?
A very dear friend of mine, whom I adore, is chronically ill. She doesn’t quite have the Snarkopolist methods down. She doesn’t have a primary care doctor and without that she does not have a RELATIONSHIP or TRUST. Without that she does not have anyone to regulate good quality pain control. She ended up at the ER in pain and was treated like a drug seeker. This creates a cycle of horrific anger and pain –not just for her but for all of us who love her. We then hate the ER more and all the ER doctors. Yet, a dear friend of mine is an ER doctor and I have several more personal connections who are ER doctors whom I communicate with regularly. I don’t hate them. I like them very much. This is SO CONFUSING. They are not mean people… WHAT IS THIS? WHY IS THIS HAPPENING? My friend is not a druggie and my other friend is not a bully. What is going on in the world of healthcare?
Another friend of mine TOTALLY FUCKED UP. She lied to her specialist. I mean – HELLO. How can we build trust when WE are lying? I know we’re scared. I know we’ve been mistreated. I know we smoke the puff puff pass to help us. I know we might do other naughty things. I get it. We might have sex or have std’s or do things that are embarrassing or socially frowned upon. Whatever that is –YOU CANNOT LIE TO YOUR DOCTOR IF YOU WANT TO BE TRUSTED. You just cannot. I’m beyond over it. I love you. I adore you. I hold you in my heart. BUT I AM TELLING YOU AN HONEST TRUTH MYSELF. I am grateful that you are all telling ME this stuff. But WHY ARE YOU NOT TELLING YOUR DOCTORS??? WHY? WHY???? I cannot give you the quality medical care that they can give you. I don’t want you to die. I want you to LIVE AND THRIVE.
WE MUST MEND THIS. WE MUST STOP THIS CRAZINESS.
Here. I TALKED TO A DOCTOR FOR YOU. I asked him a million questions and he took the time to answer them all. And every time something else bothered me, I asked more.
Melissa:
What questions would you LIKE your patients to be asking you? What would you like to tell or ask your patients?
Doctor Ryan:
Frankly, I’d like to think patients can ask me most anything about health issues. I’m really happy with involved and active patients.
Melissa:
What now? Who makes the first move in the “doctor patient relationship?” I keep urging THEM – But now what? You’re busy and they need you…
Doctor Ryan:
Not sure how to address this, except to emphasize the importance of finding a trustworthy doc to work with and who is willing to LISTEN.
When you find one, look for unicorns, gnomes, and other legendary creatures. There’s probably a zoo of some sort where they live… actually: you should title the column “Look for Unicorns”.
Melissa:
What do doctors REALLY want from chronically ill patients?
[I asked. I really wanted to know. I was interested. I think you will be too. You should listen up. Dr. Ryan took some major time to REALLY sit down and talk to us. He took the time to answer difficult to answer questions in an HONEST and straightforward way. He was sleep deprived and he thought it out and took SO MUCH TIME with me. ]
Doctor Ryan:
Obviously, I can’t speak for all docs. But I can give you my thoughts on what I, as a doctor, would like from patients – especially patients with chronic illnesses that I might be meeting for the first time.
1) Be patient: especially if I am meeting you the first time, it will take a little time for us to figure out how we work together and the best way to
communicate and get things done. It might be that we figure it out quickly, but more than likely we’ll need a few visits to click into a good pattern.
2) Give me a chance: especially if you have been through the medical system before and have been treated poorly, it is natural for patients to come in to the office feeling defensive and as though they need to push their agenda. I’m not saying this is wrong–in fact, I think it makes sense that patients who feel they have been ignored or disrespected in the past may feel the need to push to be heard. But remember that I have not worked with you before. I’m willing to listen to you and to hear your concerns and thoughts. Give me a chance to show that I am *not* like your other doctors.
If a patient seems to be aggressive or overly pushy it is my response to put up some shields and to feel defensive in return. If you explain what’s happening and tell me your story, then I can listen as we go and we can work together as colleagues to solve problems. Doctor/patient relationships are complicated, and good relationships require time and understanding on both sides. If I am willing to give you the chance to tell me what you think, I ask that you give me a chance to show that I am not like the doctors you might have seen before who you feel did not treat you well.
3) Tell me the truth: I need to know what is happening with you in order to provide the best care. I need to know what your past medical history is, whether you smoke/drink/use drugs. I need to know if you are able to afford your medications or not. If you can’t afford your meds, then I need to know which ones you have missed in order to make appropriate adjustments to your treatment. I need to know what you need. I will try my best to set up an environment where you feel safe and feel as though you can open up to me–and I ask you to communicate honestly with me.
Melissa:
What can these types things can these “labeled difficult patients” do for you or say for you? Or ask you specifically that will help you? Do you want ONE thing at a time or do you want their entire history and then a willingness to peel the onion?
Doctor Ryan:
I’m trained as a family doc: I think holistic approaches and “big pictures” are both necessary and valuable. As a result, starting with the big picture is good, but I’ll need time to peel the layers. It might not happen the first day, but we can make a commitment to start. I think a concise description of what’s happened: diagnosis, previous evaluations, meds, etc are a good starting point, but I think you need to be prepared for follow-up questions and follow-up visits.
One area of concern that is much harder to handle is pain meds, especially as a new patient and/or in the ER. All of us have gotten burned before, and pain med requests (even when fully legitimate) make the defenses go up. An ongoing relationship with one doctor helps a lot; trust over time makes things easer, as do the narcotic agreements many of use to ensure safe and appropriate med use. I think if you’re in the ER, explaining the nature of the symptoms and what is going on may facilitate things to some extent, but I think it’s still going to be a challenge.
If you are establishing with a new primary care doc, they may ask you to either step back on the treatment a little to see if narcotics and such are truly necessary. I recognize that puts patients in a tough spot, but I think it can be a reasonable request on the doc’s part so long as there is a willingness to resume previous treatments especially if they were helping. One thing I do when I get a new patient who is already taking chronic pain meds is to provide a 30-day prescription with the understanding that I MUST have a copy of your records in order to provide another script. That way, I don’t penalize the pt for changing docs but I also don’t feel committed to a long-term medication without reviewing the course of events that brought us to that place.
My preference, also, is that should you come in w/ a list of concerns, let’s review the list together at the start of the visit. Maybe we can handle all the issues in one sitting, maybe not. If we can’t, please understand when I try to defer something to a future visit. Your 20 minute visit is really only 7 minutes long by the time nursing, registration, charting and prescription-writing are accounted for and it’s really hard to appropriately address multiple issues at one time especially if they are complicated issues. So, again, patience and understanding on both sides of the stethoscope.
Over the course of time, I want to know what fears patients have, what concerns weigh on them, and what goals they seek to achieve: these things will help determine therapy and care. But I think these discussions must be built on a foundation of trust.
Melissa:
If a patient has lied to you because they’ve been afraid or abused by the medical system in the past but want to confess now – how do they do it? Should they? How do they come clean?
Doctor Ryan:
I think the patient should try and reveal what she’s been hiding. No relationship–doctor/patient, professional, romantic can survive indefinitely on a foundation of dishonesty. At some point, the truth will have to come out. If the patient tells the doctor, there is at least a chance to re-frame the relationship and move forward. If the doctor finds out through other sources, then it’s over. Period, done.
I’m not saying it’s not going to affect (or even damage) the relationship, but I think that it needs to be addressed. Maybe even sending a letter, describing the reasons and the context for the deception, could lead or precede the discussion. Either way, though, I think it needs to come out.
Melissa:
Thank you so much – gushing – gushing.
Doctor Ryan:
Glad to be of some service.
Ok my loves – does this help at all? A real live wonderful doctor just talked about what he would like to do to start helping with a CHRONICALLY ILL PATIENT who has been through the ringer. He gets it too. Where do we go now? I’m so over all this crap. I’m so tired of my friends being abused by the system but I’m equally tired of them abusing it. Get it. STOP LYING TO YOUR DOCTORS. STOP WHINING AND BEING JERKS TO THE PEOPLE WHO ARE CARING FOR YOU.
I want to scoop every hurting soul up and hold you for as long as I can. I really do. I’ve been there a thousand times. And some days I still am. I HAVE BEEN TREATED LIKE SHIT OVER AND OVER. But you and I both know that you cannot win at a system that was designed primarily by and for a patriarchy. We are only now coming out of it. That means it has rules and regulations that even doctors must follow. I’m not their biggest fan. But they are busted down a thousand times throughout their training and they have to heal from that crap too. We have to try not to make it worse.
The most enlightening thing you can do is be friends with someone who is a doctor. Go to coffee with one. Listen to them talk about how much they love their patients. Listen to them be HAPPY when their patients are successful. THEY FUCKING CARE. They do! They really do. But chronically ill patients are wildly soul sucking when all we do is wahhh wahhhhhh. I cannot even stand half of the chronically ill people I know who ONLY define themselves as a set of symptoms and limitations. We will never get better be we do not need to be BITTER. So we must find ways around being the soul suck on the world. We must find ways to be SUCCESFULLY SICK. Even if that looks like going to your doctor and ASKING FOR HELP – reaching out and asking for a relationship AND TRUSTING THAT ONE WILL BE THERE FOR YOU.
That does not mean for one moment that you are not trustworthy or that your doctor has the right to be a tool. But my sweets, I never want to get another call again asking me how to get out of a lie. I just don’t. I’m over it. BECAUSE YOU DON’T LIE. THAT’S WHY. We learned that in primary school for a reason. And back then, lying did not have life or death implications. NOW IT DOES. STOP FUCKING UP.
Do better. Work harder.
Makes lists of your health goals and take them to your doctor and say – HERE IS WHERE I WANT TO BE – we don’t have to get there anytime soon, but I want you on my team.
I’m writing this on a rickety old POS. I have just moved. My heart is broken. I am tired and sick and cranky and my dad is sick but I have no more tolerance for a shitty mean broken health system that will not help my friends. And I have even less tolerance for my friends who will not help themselves. LET US DO BETTER OK.
Thank you to Doctor Ryan for taking the time and the energy to make my broken heart feel better. YOU ARE A DOCTOR WHO CARES. I hope people here get it. I hope they realize how much time a busy wonderful primary care doctor who works with low income people and was tired already took to talk to THEM. To reach out and really TALK to chronically ill people about WHAT DOCTORS WANT FROM CHRONICALLY ILL PATIENTS. I hope it matters. I hope it helps. I hope doctors STOP BEING SUCK JACKASSES to real patients in need. And I hope patients stop being such complete FUCKING MORONS to their doctors and their own health.
I adore you. I write with only the best in mind for a better tomorrow for all of us.
Thank you, Dr. Ryan!
Tags: Chronic Snarkopolist Look for Unicorns What do Doctors Really Want written by Melissa Travis, feeling heartbroken when not heard by doctors, finding doctors that listen, learning to communicate with doctors, make health goal lists, managing chronic illness, managing chronic pain and chronic conditions, managing medical expectations, taking responsibility, telling doctors the truth, working well with doctors
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26 Responses to “Chronic Snarkopoloist: Look for Unicorns: What Do Doctors REALLY Want?”
Leave a Reply to Melissa TRavis
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Great! Great! Great write-up Melissa. — Thanks for posting it.
HD
Why thank you HD!! Keep reading and writing in!! And I’d LOVE to know more about what you’d like to read… Pick your topics.
Adoring!
x
Melissa
This is a wonderful post. Thank you, thank you, thank you for writing it!
Hello Diana Lee,
Thank you sweets!! Always appreciate when you write in!! Meanwhile, I would LOVE to hear what else you’d like to hear about… what would you like for your docs to do for you? Anything? Dish my dear!
Kisses!
Melissa
Wow, amen, holy crap, thank you.
☮ ♥
Hello Sweet Monica!
Always love when you write in!! Remember to write in with things you want to hear from me!! Adoring you! What else? What do you want YOUR doctors or nurses to know from you? Anything?
Kisses from me to you!
xo
Melissa
it’s like our fifteen minutes…..that’s it…..Dr.’s are told EACH patient gets 15mins. Someone in charge tells them 15minutes~~~~~~!!!!!!! TALK ABOUT OUR 15 MINUTES OF FAME! How can they be listening if they are watching the clock?
Hi Linny!
Firstly- you WILL get what you need. I think the idea that it is a 15 minute appointment is not always correct. My rheumatohologist has NEVER taken that little time with me. Never. In fact, she often runs over, as does my neurologist BECAUSE they are both so fastidious and thorough.
And another insight came from a chapter I read by Dr. Rachel Naomi Remen M.D. who herself suffers from Crohn’s disease. She had only 15 minutes to tell her entire story to her own surgeon… she NEVER thought she could. But sure enough HE LISTENED to her and she got the whole story to a brand new surgeon in that amount of time. And he was able to operate on her in the end.
So 15 minutes IS ENOUGH — ** OVER TIME ** … it is like an onion. We are not going to get healed in a day. We have had a LIFE TIME of illness. We have been sick for more than a day.
We cannot expect to take a list of 200 illnesses and problems in and get them all fixed. So I DO fully expect to take time to fix them all with my doctor. I DO expect to go back repeatedly and work things out in a partnership. THIS IS THE ONLY WAY TO MAKE A TRUSTED TEAM.
I feel good about this. As I get better, my doctor feels more encouraged, and as I go downhill, s/he realizes what is not working or how I am responding.
So – 15 minutes builds up over time.
THANK YOU SO MUCH FOR RESPONDING. I love when people write in. Please do every week… contribute all you can. Tell me what you want our doctors and nurses to know from you!! I’m listening!! I want to know!!
Much love!!!
xoxo
Melissa
Great interview Melissa and thanks to your lovely Doctor Ryan I am in love already send him over. He won’t get any lies from me.
I believe in being honest with your doctor no matter what you have done for example… changed, stopped, not taken medication. Very important they have the full picture because how can you be treated properly if you omit the truth or lie to your doctor.
Hope you move went smoothly and you are settling into your new abode sorry to hear about your dad too, healing vibes coming your way, it can’t be easy all round.
Thanks for taking your time which must have been really busy to interview Dr Duncan.
Lolly
Dearest Lolly-Lol –
How I’ve missed you!!!
I’ve had you in my heart the entire move.
xoxo
Melissa
We get it, honey–we do. But we all don’t see Dr. Ryan. Most of us never find a doctor who cares, can care, has ever cared, or ever will care. I’m so beaten down I don’t care if I ever find a doctor who cares. I can’t care for myself – why on EARTH would I give a precious spoon (Spoonie Theory) to a doctor who won’t care for me unless I meet him where HE is?
Basically, that’s what you’re saying: that we have a heroic responsibility to be the ones to suck it up and do right first. That it’s OUR JOB to treat doctors the way a wife “gets around” her husband–first. That we mustn’t be sick, tired, dying, lying, or anything else that doctors are trained to treat until we’ve paid for at least several visits. That it’s our job to say what doctors want to hear–first.
Oh give me a break.
I cannot and will not part with my precious spoons or any more money in a futile effort to fix a system that I’m already paying to fix ME. I did not cause the problems in health care, I am not contributing to them, so by my word I will NOT coddle insecure health care professionals who will not help me and meet me where I happen to be.
Dr. Ryan wants the courtesy of not being treated like other doctors? Whatever. He’s not my doctor. My doctor is in fact like other doctors. I simply will not play “I’ll give you a co-pay if you’ll be my friend” with a doctor.
I do agree that people must NEVER lie to their doctors but I don’t blame them. I blame the doctors.
Dying at home was good enough for my father, and it’ll be good enough for me whenever it happens.
Felt good to get this off my chest. I understand if you delete this.
Parin –
I HEAR YOUR FRUSTRATION AND ANGER WITH YOUR CURRENT MEDICAL SITUATION – AND I HEAR YOUR FEAR THAT IT WILL NEVER CHANGE. That being said, what Melissa is saying, I think, is that WE NEED TO FIGHT FOR OURSELVES AND FOR BETTER CARE. We have to work with our doctors. YES – each of us has a different approach. I want an intensely analytical doctor who demonstrates laser sharp boundaries. I also need him or her to laugh at my jokes. Weird, I know. Mostly, what means the most to me, is someone who can get/keep my thyroid in range and work in partnership with me to HEAL THE REST OF MY BODY.
Do NOT GIVE UP ON YOURSELF. All of us have been through more doctors than Victoria Secret models have been through underwear. YOU HAVE TO KEEP FIGHTING. You have to see a lot more shitty doctors. Eventually, you’re going to find a doctor that wants to work with you the way YOU WANT AND NEED TO BE WORKED WITH.
Don’t give up.
for the record. I LOVED THIS ARTICLE AND FELT SO DEEPLY EMPOWERED AND INSPIRED BY IT.
I also want you to know that I HEAR YOU and I understand why we see this post differently. I’m proud of you for speaking up, even if we do disagree. We’re not always going to agree. That’s one of the many beautiful things about Dear Thyroid.
Katie –
Dearest Parin,
I adore you beyond words. You are one of the people who follows my blogs, writes in regularly, and is constantly following healthcare and medblogs.
You are WITH IT.
I would NEVER ever delete or moderate your opinions or your words… Never!!!
Everyone else has already said a great deal of what I wanted to say or would say…
But I want to congratulate you for speaking up… YOU ARE FELT SISTER. Upon my word you are felt. Big time.
I’m sick of it too… all over. But yes – I keep trying. Because if I give up now- nothing will ever change. And here’s the deal – I have enough people write to me to TELL ME about their good experiences TO KNOW THAT CHANGE IS POSSIBLE.
One person- one day- one health care delivery at a time. I hear doctors and nurses AGONIZING over how to deliver BETTER HEALTHCARE to people. I also have been TREATED LIKE SHIT.
I hear ya. I feel ya…
But doctors are patients too. And they have sick kids too. Some of them have had UNINSURABLE KIDS. Others have disease and illness – chronic horrific illness they deal with WHILE THEY WORK. They are not sub-human… sometimes they are just BROKEN INSIDE. To them- I WALK AWAY.
I’m not here to fix every doctor. I am here to reach out and touch chronically ill people’s lives so WE CAN EMPOWER OURSELVES and know when we deserve better and when we can self-advocate.
If your doctor is like every doctor — I so so want you to get better care. It sucks more if you live in a rural area. I get it. Blahh.
Adoring you. Adoring your opinions and your voice. And I always always want you to speak up and BE LOUD AND CLEAR.
xoxoxo
Melissa
parin,
I applaud you for speaking up and being honest. You don’t have to take the crap.
I have had my fair share of bad doctors misdianosis and still bad treatment Yet i live in hope of finding that doctor who will work with me not against me looking ot for my wellbeing.
And my last endo lied to me when he said he would concider giving me T3(cytomel) only to tell me on my last visit (after I had complied with everything he asked of me and still no improvement) that he didn’t beleive in FT3 it wsnlt important that it meant nothing well I no longer see him and have no intention of seeing another Endo ever, so they too can mislead patients and give them false hope.It works both ways who’s the client here.
Jinx! We said the same thing. har.
I AGREE WITH YOU. It’s fucking hard; impossible. I have been through so many endoCINGEologists and have finally found one that MAY be one I can work with for a while. That being said, the only reason why is because I FOUND an integrative specialist who is so on it, that she is willing to advocate for me on a super deep level – track evryone down and hock them to ensure that I AM GETTING THE BEST CARE.
Never give up.
We all have horror stories. As you know, Lolly, all we have to do is read OUR DEAR THYROID LETTERS.
Love,
me
Next subject should be “What realistic expectations do Patients(clients) want from a Doctor. Looking from a thyroid disease perpective as this seems to be a grey area world wide. And there are so many variations on treatment, reading simple lab results and interpreting them according to symptoms. To many docotrs are TSH worshippers and tend to foget the most moportants FT4 FT$ and antibody testinmg until they get that right treatment isnlt going to change and docotrs are still going to ignoratn and arrogant as ever adn we as patients are stuck in the middle of it because you cant drum into a Doctor or endo fact based and sceintifc research when they are hell bent on sticking to what they know and not looking further to helping there patinets.
You are lucky if you do find a good docotr like that and they are about they are just far and few between, this is where things need to change not the way we approach a doctor about our health it’s like fucking flogging as dead horse or a limp prick.
now I’m off my soap box I felt better for that too.
Lolly
Dearest Lolly-Lol,
I am in the middle of wondering if I should walk away from my endo right now. I’m in the middle of the T3 battle RIGHT NOW. grrrrrrr. I hear you. I hear you my gorgeous wonderful thing!
I DO want to write a piece on “what do WE want from our doctors!” That’s brilliant. It would take longer because their are MORE of us… but I will do it!!! You’re a gem!!! Muah!
I’ll put it out there and let people e-mail me and send me THEIR vision. It starts with you!! Perfect!
Meh – hear ya about flogging the dead horse and pricks… *grumble*
Loving you all over – like a kid wrapped in candy floss!
xoxo
Melissa
Having had more than my fair share of crappy doctors; being left in the ER for hours in pain because they are worried I’m a drug seeker (check my medical records!!!) while I had an ovarian cyst rupture and leave me with over a liter of blood in my abdomen . . . I have come up with three simple things:
– I tell my new doctors up front that *I* am in charge of my health and they are my consultants
– I always keep a long list with me of all of my diagnoses, meds, and procedures (this helps with ER visits!)
– I’m not afraid of white coats – I’ve fired plenty of doctors and I’m not afraid to flip up my shirt and show medical staff my hideous scars (see, not just here to beg for drugs – I have a *real* medical condition)
Having been through two types of cancer, many major diagnoses, a twisted colon that nearly killed me, etc. makes you pretty stubborn about your medical “care”.
Don’t fear the white coats!!!! If someone with a medical degree isn’t *LISTENING* to you, fire them!
Chronic patients aren’t automatically drug seekers or liers. Yeah, there are those out there but sometimes we have to shake up the establishment and remind them that there is supposed to be “care” in medical care.
Empower yourselves patients! Ask questions! Bring in your long list of concerns! Look for options! Ask friends (or a doctor you trust) who they would recommend if you need to change a doctor!
No one gets out of this life alive but I’m not going out without a good fight! 🙂
Well hi there my dear Utahmomma!!
You are RIGHT up my Snarky alley! You’re fabulous!!! You’re amazing!! Love it.
So– here’s the deal — I’m 100% on board with everything you’re saying! I’m picking up what you’re putting down! All of it. I’m hook, line, and sinker!!
So– what I’d love for you next is a wee little blog or e-mail missive about what you would like to see or hear from your doctor… like what Lolly wants. I want to compile it and take it back to us (them)… and we can all start with it. Yah? CAN I GET A HELL YAH??
Let’s go! You bring your fight! I’m on board!
xo
Melissa
I certainly understand Melissa’s point of view; but i understand Parin’s too. I’ll side with either one of you ladies on any given day-it just depends on how crappy I’m feeling when I wake up. I don’t make a habit of lying to anyone, especially a doctor, but that doesn’t matter if the doc isn’t listening. It’s been 4 yrs for me. I can match any one of you on horrid doc stories. i don’t have as many good ones. However, I love my cardiologist and if he weren’t in his late 60s i’d beg him to get a fellowship in endocrinology. Hell, i’d offer to become a polygamist and have relations with him if he’d take up endo as a hobby. I’ve a new female GYN. She seems nice. She actually has fixed my vajajay after Dr Doom let me suffer for 9 mos. I have a cool GI doc who’s trying her damndest to keep me from perforating a VERY bad colitis inflammation. my new Fam Med doc is a darling thing who listens. She knew nothing of ordering T3 and has spent the last 6 wks trying to contact an endo friend to try to start me on a small dose of cytomel- as of yesterday, she has been successful in obtaining instructions on how to add cytomel to my synthroid. I emailed her and gushed my praises concerning her extra effort….BUT– while I’ve been tap dancing for attention and going in armed with data and putting on my biggest smile and prostituting myself medically- my chronic condition has deteriorated into probable mucus colitis and fybromyalgia. How sad to think that I’ve endured 4 yrs of suffering while i have progressively gotten worse. I have always been optimistic that THE NEXT ONE will be a Dr Ryan. And now that I get to try cytomel, I have to wait a wk to add it to my bevy of meds because I had to start Cymbalta for the new fibromylagia dx- if I start both at the same time and begin to actually walk upright like a normal human and not a distant cousin to homo sapien, how would we be able to tell which new med actually was working?!I walk like I have a 2X4 UP MY ARSE. my finger joints, elbows,shoulders, hips,knees ,earlobes ache-my colon hurts. This is 4 yrs people. IT IS NOT ALL IN MY HEAD. and while I seem like I might be onto something here, don’t some of you wonder if its a little too late? Maybe I’m depressed because I feel OLD and I’m not. Let’s hope the cymbalta precribed for its known pain relief in fybromyalgia will tackle the depression that seems to be creeping in. I have everything to live for and somedays it just doesn’t seem to matter. No, I’,m not suicidal. I enjoy this life way too much .I’m depressed because I’m concerned that all this dicking around with my health has in some way shortened it and that really pisses me off.
Dear Bee-
Oh I’m soo picking up what you’re putting down. And for the record – you’re not “siding” with anyone here! I’m totally 100% got the back of everyone who’s writing in!! These are ALL OUR STORIES!!!
I’m all over this shit!! Your story is sucking hard. And being sick SUCKS. HARD. Especially when you’re not getting the help that you need and when you’re not being heard. That BLOWS. It just does.
I HEAR YOU. I have sat in front of MY BEST DOCTORS and they have looked in my eyes and not been able to offer me some help on some days. Because even the best docs cannot perform miracles.
Meanwhile — the shittiest docs can RUIN YOUR LIFE AND CRUSH YOUR SPIRIT. And that is what happens to us. YOU ARE RIGHT!!!!
I’m sorry you’ve gotten progressively sicker. I’m sorry you’re feeling worse and not better. But I’m glad that you’re on to some drugs that might lift you out of where you were at. I’m pulling for you. I’m in your corner!!
No chronically ill person would EVER doubt anther’s story… and all of us HEAL from sharing with each other. I’m SO GLAD you’ve shared!!! Keep doing it. And sing it to the rafters. And tell me more. I want to hear what you want the doctors and healthcare to know… what do you want?? Tell me. Write back.
And keep writing. Keep sharing here. Adore you!! Always!
xo
Melissa
This is about to degenerate into a “can you top THAT?” of medical horror stories. Nobody approves of that.
To make this post thyroid-related yes, I have thyroid disease. I have 11 nodules, have had 2 biopsies, have tested twice completely zero for all twenty-something antibodies, finally diagnosed with multinodular goiter, treated off and on with either Synthroid, Armour Thyroid or levothyroxine, and my endo is completely convinced I have thyca that they just haven’t found found yet.
Dear Thyroid and Dr Travis, I’ll be 50 in December. I worked directly with the public for 42 years for free, as self-employed, and as a W-2 wage earner – yes, I was performing in show business when I was a child. I worked handicapped for decades before retiring on disability pension. I have held the hands of countless thousands of licensed professionals and regular people who were weeping for joy just because something within me touched something within them. I am a professional communicator and a professional listener.
You need another excellent example of how stupid Western medicine has become, did I hear you say?
Doctors are so afraid that they refuse to help me with pain. Now, I’m beyond the point of ever getting relief until something else gets discovered.
And here’s how that happened.
There are more than a hundred prescription drugs that have shown clinical benefit in the prevention of migraine attacks. As of right now, four are approved by the USFDA for migraine prevention.
There are vast combinations of these prescription drugs that doctors and patients may come up with in working out an effective preventative regimen.
I have been working with primary care physicians, neurologists, and one headache specialist for more than twenty years to hit on a combination just to reduce the intensity attacks so that now, they respond to a high dose of a prescription NSAID called Indocin, a drug used primarily for nausea from surgical anesthesia called Robinul, and Valium. I have a very few potent opioid capsules for extraordinary attacks but they only help in combination with Indocin and Robinul because pain is only one feature of an acute attack. I have never gotten complete relief from a migraine attack. I have had migraine since I was 5 years old. My prev cocktail is Effexor XR, Keppra, and verapamil.
It’s reasonable to allow any given drug or combination of drugs three months or so of trial before going on to the next one(s). That’s four switches in a year, more or less.
But doctors who treat migraine are so frightened that they rarely prescribe effective relief meds, “rescue meds”, during prophylaxis trials and nearly categorically refuse to prescribe them if the patient is not on a prophylaxis regimen. A migraineur could spend decades in a state of disability due to under-treatment of acute attacks until and unless an effect prevention regimen is found. You’re doctors. I’m not going to remind you of the physical effects of decades of under-treated pain but I’ll tell you the social and humanitarian effects of it on me.
There are a few prescription treatments that help some people with some attacks but they are not harmless, they don’t help everyone, and they don’t help every attack. If you believe the marketing by drug manufacturers, you deserve what you get which might be death.
Have you read the prescribing information for Imitrex in the last month? Otherwise perfectly healthy people have fallen down dead from their first and only dose of Imitrex.
A headache specialist I saw at his direction 3 times over 18 months referred me to another doctor and these were his words: “You’ve been so under-treated for pain for so many years that you’re not worth my time to treat.” He said that. To me.
I’ve spent decades working on developing preventative regimens. Few doctors would help me with medications for attacks during the 3 months or so that it takes to tell if a regimen will work or not. I spent decades treating myself with Excedrin and aspirin (until I developed asthma attacks from aspirin), Tylenol, Advil, and Aleve. I used Imitrex with limited benefit for about 2 1/2 years until it caused me to have a transient ischemic attack. I was told by my doctor to go to the ER and then was sent home from the ER untreated because the charge nurse told the doctor I had “just a migraine”. All the while the doctor and I had been working, working, working on a preventative program that would help, but she would only give me Imitrex for relief.
I have been under-treated for pain for so many years that I’m not worth the time of a headache specialist. And for no better reason than decades of doctors’ fears.
The headache specialist I saw who said I wasn’t worth his time? He also told me he felt like he had not made enough money from his (actually possibly non-existent) participation in the research for a migraine treatment drug he said he helped develop–Imitrex, which is contraindicated for me, which he knew was contraindicated for me because by then I had developed basilar-type migraine too. I did not accept the script he wrote and held out to me in his hand. If he “developed” Imitrex why did he try to make me take it? Does his “research participation” consist instead of financial investment in Imitrex?
I’ve written a rant about the primary care article that showed that PCP’s delicate feelings are disturbed by having to hear 10 trauma stories from their patients per week so, to solve the shortage of PCPs that this causes, they should be paid more money. I haven’t posted it on my blog. Writing it made me so sick I’ll have to recover before I can proof it and edit it one last time. I have come to the conclusion that doctors vastly overrate their compassion and overestimate their effectiveness. And they underestimate the effect of “doing nothing” when something can and should be done.
I know how I will die. I will die from a blood clot that prolapsed my mitral valve will spit out, send to my brain, and will cause a fatal stroke. How many of the migraine attacks that I have are caused by tiny blood clots too small to kill me? The neurologist who explained all this to me didn’t know but he felt like most of them were.
So don’t tell me, doctor, that you have to get your money’s worth from a few visits before you’ll help me. Don’t tell me, doctor, that you’re just like everybody else except that you’re a doctor for a living. Don’t tell me, doctor, that doctors don’t like to be wrong, they deserve respect and admiration but oh yeah, they’re just regular folks who happen to be doctors for a living.
Don’t tell me anything, doctors, don’t tell me anything at all. I would tell all of you to go to hell but I don’t want you anywhere near me.
I am retired on disability pension. This post took something more than five hours for me to write.
And I’m done with this thread. You’re welcome.
I have to go get well now.
Oy Parin,
I believe and HAVE ALWAYS BELIEVED that stories heal us… that you taking the five hours TO SHARE THIS has healed us all as painful as it is. Thank you. It is heart breaking and it stayed with me all morning… heartbroken for you… we all carry our heart break.
Right now, I will hold you in my heart – deeply and truly… because we all need it… we all need compassion. We all need to heal.
I hope you find the healing in whatever you can – for the fucked-uppedness you have described. You’re walking it – you know it the best and you have described it. Heal well. Share anytime- vent as much want and if anything changes in good ways celebrate — and if it goes to the shitter – come and we will hold you through it.
love,
Melissa
Dearest Melly-Mel,
I missed you too, I have to take time out sometimes to gather myself, ready for the next battle.
You know you don’t always need an Endocriminologist to medicate you for thyroid if you have a good internist as you call them or GP as we call them and they are willing to take care of the thyroid side of things.. then why not talk to them, see if they will help.
The Endo’s in the UK are a law unto themselves they go by the book. I think if I remember correctly one they give to there students bought at the local pharmacists for the sum of £3.99 a bargain at the price because it spills shit from it. I was advised by my first Endo to get one, his quote “I get all my students to buy it” I did and I read it and thought well if this is what you are giving your students to read Fuck Me there is no hope!!
Or Melly baby you could do what I did and try and convince your endo by taking in current research about the FT3 and benefits of T3 replacement in conjunction with T4. But then you may be still wasting more energy and time when you could be looking for an endo who is willing to put you at least on a trial of it. As I said mine Blatantly lied to me, I told him we are never going to see eye to eye he makes too much emphasis on the TSH and doesn’t look at the FT3 at all so that is a no brainer run don’t fucking walk and I did I gave him every chance and he let me down big time. I am still at square one, still searching for a solution but I am not ready to give up yet… I have too much fight in me. This is what we have to do, out of 10 bad doctors there is one good one waiting to be found.
I saw one only today but alas it wasn’t for me and he was a chest specialist (he could examine mine anytime).. he took time to explain everything even let us both see the CT scan of Her lungs asked if we had any questions and when we did he answered them honestly and correctly and if he wasnlt sure he would say he was honest and that is one thing I expect from a docotr honesty. I fell in love today, I feel like taking up smoking just so I can get on his books.:-)
Why are all the good ones always in the wrong speciality.
I will be happy to put forth my views on what i expect from a good Doctor, endo, surgeon, specialist.
Let me know message me or get Katie too.
Love your column.
Love you cos your one hell of a strong person.
Lollyxoxo
Parin,
You haven’t had it easy, you really aren’t alon.
My friend takes lots of painkillers for different chronic illnesses and not one really helps, then you find you are taking one to counteract the side effects of another and it’s never ending, then there comes a time when the ones you are actually taking don’t do a thing because your body has become accustomed to it. This isn’t the doctors fault really it’s trial and error although there errors can cause problems by RXing the wrong kind of medication for you causing another set of problems.
I hope that you don’t lose all faith but I do understand your dilemma, many a time I have wanted to give up. I hardly visit doctors anymore I would rather go see my NP than my GP but sometimes needs must.
I hope that the day will come that you will find a good Doctor for you and when you do for fuck sake hold on tight to his balls, so he don’t wriggle away.
Don’t give up hope there is a “Dr.Right” waiting just for you and for me maybe someone here can point you in the right direction with a list of good doctors.
As for your multinodular goitre I would seriously think about having it removed, to have RAI would be out of the question because then there would be no way of telling if any of the nodules are cancerous, good chance are they are benign but that may not be the case. I was told the same thing after having FNA after FNA couldn’t take the chance because the Nodule on the right lobe was big. Had surgery, to be honest I do regret it now but I really had no choice, and if i had the right care and medication and some fucking doctor who even understands interpreting thyroid function tests along with symptoms I may have been in a better place over 3 years post TT.
It did turn out benign.
Maybe you could talk to other thyrellas fellas here those that have cancer or had surgery for it. I do think it is something you can’t ignore.
Ever thought about writing a letter and blog for DT, I would be interested in reading it.
Lollyxox
Melissa, I LOVE LOVE LOVE this article. It’s eye opening and gives me much to think about. THANK YOU!
I was at my endo’s office several months ago for a lymph node biopsy. I’d already had another doctor attempt this biopsy but he was unsuccessful. I asked my endo to try himself, even though he does not usually do lymph node biopsies. He was successful. He immediately got the sample he needed. After the procedure was over, he and I were chatting in his office and he told me he was excited. Excited that he got a sample. He said that was instant gratification for him, and that never happens in his line of work. That really got me thinking–until then, I’d never put myself in his shoes. Of course he doesn’t get instant gratification as an endocrinologist. It takes a LOOOOONG TIME to find the right treatment path for thyroid patients, and even then it takes a long time to see marked improvement. Yes, it’s hard work to be the patient. But it’s hard work to be the doctor, too.
Thank you. You’re awesome.
xoxo,
Joanna