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Shouldn’t be a “silly fantasy”, I write my Dr’s letters all the time & fax them in the day before our appointments, then carry a copy with me. I have a habit of forgetting ALL I want to discuss. I’m sure it’s not the same, but I’m just sayin’ 🙂
Honestly, it was truth mixed with humor as usual. I’d actually be afraid to send a letter like this one. I have sent one to be added to my chart before, correcting inaccuracies in the doctor’s version of my history. That still made me very nervous since there are not enough rheum drs. and it can be hard to find a good one. Maybe if we actually did send letters like this one, they’d start to get it. But I’m not sure with some of the medical literature about “pain thresholds” and “rheumatoid personality” and “hypochondriasis with RA.” Wonder if assertiveness works differently when your disease is mostly “invisible”?
I’ve gone through periods of it being visible and not so visible.
For anyone newly diagnosed, start collecting your medical records now and put them in binders. I waited way too long and now it’s almost impossible. I split mine into categories, such x-rays (on disc), CAT scans, and MRI’s, drugs used and benefit/side effect notes. Diseases related to arthritis, onset etc. Don’t drag it to the doc, just ask what he may need to see at your next appt. When I go to Mayo I make a .5 inch binder with the past year of treatment. First time I did it I saved lots of time and I had more time for questions. Over the years I’ve actually forgotten things like the gallbladder attack and the surgery for it and my hysterectomy. They were but tiny blips compared to RA.
I’ve taken to saying my Doc wants me to hand carry them to assure delivery, saves me any costs involved.
I agree Nanc – we need to keep our medical records. Part of managing our treatment.
GRAND IDEA KELLY!
I’m off to compose my own letter now!
Kelly: This letter is so appropriate. It could go to my local PCP, but he’s so afraid of touching me that I don’t have to go through that. He tries to understand, but he really doesn’t.
If you don’t mind, I want to do an example of what a great doctor does.
Dear Dr. M.,
I am so lucky I found you and regret that I can only afford 1 trip a year to see you, because I really need 2 to 4 visits per year.
You trust me to know my own disease. You admit when it has you baffled too. When you referred to my immune system as a “total train wreck” you made me laugh when I really needed to.
You secretary gave me he## once because you do so much more for me than you do for other patients. Like referring me to the top specialists for other problems. You know what this disease has done to my life. You try to give me some peace by telling me you know of no one whose had these problems for as long as I have without experiencing deep depression.
You applauded me for working as long as I could (30 years),
you didn’t make me feel like I’d done something wrong. Yes, I probably hurt myself in the process, but I got to have a life.
When you told me I probably had CFS mixed into the mess I said, please no more. I can’t have another disease that I can’t do anything about and you respected that and understood.
At my last appointment, when you put me on Arava and Humira on top of the steroids, you said we have to get this under control or it will kill you. Harsh words, but words I needed to hear. Because we both know what’s ahead for me and it’s not pretty.
When my local doc thought all I was was a big pain pill addict and treated me as such, I told you about it, and you ordered a bone scan to be done locally. That was exactly what he needed and his attitude changed right then.
I cannot thank you enough for everything you’ve done for me. Not only for your skills, but most of all for understanding the unrelenting hell of all of my diseases.
Any doc worth his salt shouldn’t be pulling and pressing joints that are obviously diseased. While they may have to use some pressure to assess damage a patient should expect some pain, but we should also be able to say enough. I don’t want to walk out in more pain than when I came in. It’s happened to me before and sent me straight to bed. My doc above only did it on the first exam and then I knew he had to.
By the way Kelly, Good Morning, may this day bring you bits and pieces of joy. ‘Cause we’ll take all of those we can get, right?
I wish so much you could see Dr. M., I don’t know any of the docs at Mayo in Fla, just one in AZ. She was the protege of Dr. M.
Nanc
Now that’s a grand letter. I especially relate to the ‘there’s always more I want to tell you’ and ‘you say your joints do that too’
I know exactly when you were thinking when you were writing it. There are so many terribly mean things I would like to say to my rheumy especially about the fact she already knows how much pain there is in my knuckles and fingers. She is lucky I just nod and don’t punch or kick her. It really ticks me off when I say “yes” and she says “most people with RA have the worst pain in their knuckles and fingers.” If she knew that, why the heck did she bother?
Ive always got so many things to say to my doctor i always say im going to write them down and I never do.. and alas i forget every single time.. I believe there should be a name for this Dr amnesia.. if anyone can think of one lets patent it right off..
Oh, Kelly, I’m so sorry that you haven’t found an understanding doctor yet. That must be really frustrating.
As for the “there’s always more I want to tell you” line, maybe it’s time for a different approach. I type a list of things I want to mention and questions I need to ask. My rheumy always addresses everything I bring up, and always asks if I have any more questions. My PCP just takes my typed list and runs through everything – saves us both time. If all your issues aren’t being addressed, it’s probably time to try a different approach.
Good luck. Hope your next appointment goes better.
I’m sorry if I confused you. I’ve talked on the blog a couple of times about how I do like my new doc. It was a great relief to find this doc.
However, there are still some things (like in the letter) that I just can’t seem to get across. I am very good about bringing brief lists and forms that I type up to go in my chart. Several docs have been quite irritated about that. Not this one so far!
On the other hand, the lab techs and IV nurses and x-ray techs have been horrible – physically rough every time for the last couple of years. I actually toned it down for the post. I’ve politely explained that it hurts, but I have found that “complaining” leads to rougher treatment so I do my best to “act” like it doesn’t hurt.
For anyone who’s interested, there have been comments about this on the MRI post and another one here.
Kelly, I’ve never been treated that way by any of the doctors (pcp, sports medicine, rheumatologist), the P.A., or the P.T. who convinced the first two it was RA. They have been utterly gentle. I am so sorry that you do not receive gentle treatment. I’m shocked that doctors whose specialty this is would be so ignorant and unkind. My heart goes out to you.
I wish you could all see Dr. Gordon Lam at Carolinas Medical Center-NorthEast in Concord, NC. I didn’t know what a good rheumatologist was until this young doc came into the practice here in this small town outside Charlotte NC. I have been diagnosed since 1994, and have had doc after doc here in town – but they all seem to up and go somewhere. I hope Dr. Lam will stay a while!
He wants to treat RA aggressively. He understands the new thinking of “get it into submission quickly.” He doesn’t accept it as a fact of life that one must hurt with RA. While I am used to living with pain, he is determined to help me find a way through it to the other side. I just received my second Rituxan infusion last week, and knock on wood – I’m still feeling good! Even though I am almost at the end of a prednisone taper, I haven’t started back to hurting yet like it always happens.
If you have an old school rheumy, you probably hadn’t thought that there was a way to feel better. See if you can find someone younger and interested in the newest treatments. I wish you great luck and success! And I wish you a great doctor like Dr. Lam! If he ever leaves me and comes to practice in your town, I’m going to come and be your next door neighbor.
Godspeed!
Beth Feeback
Thanks, Beth. “Get it into submission” – that’s great! 😎
Can I just say that this guy in Concord once shook my hand and squeezed it so hard that I almost fainted. Tears sprang to my eyes. I have never forgotten it. Not my doctor, but just a random dude in the course of the workday. I don’t know why I felt the need to make this comment here. But it was a traumatic event, for sure. It has been YEARS since, but if I ever see him again. I’m pretty new to message boards. Maybe this needs its own thread. Kelly? Help.
I know of many people that carry copies of their own records, and maintain their own notebooks(me for one). I have gotten positive responses for being a proactive, responsible patient. We are the most important person of our healthcare team! 🙂 Ive found that many doctors’ attitudes, for patients being proactive, have changed for the better since I graduated from nursing school in 1981.
Kelly,
Just found your blog. I love your attitude and ability to express yourself. I was diagnosed at 24 and am now 46. I was told not to have children (my RA was severe right away like yours) but happily I ignored that and have a wonderful 18 year old daughter. After that I was on Meth until the Enbrel trials so no other kids.
My life has been great despite the damned RA. I wouldn’t have been browsing the web looking for a blog like yours if I felt well – the truth is I haven’t been able to get out of bed before noon all week and my Remicade was 2 weeks ago. Not good.
Even if you are smart – and even if you have access to the best care it is difficult to know what is going on. Should I give the new dose of Imuran more time or demand to go on Rituxin? For that matter will Imuran give me cancer more surely than prednisone will give me other complications.
I never know if I am doing the right thing and that’s hard because I am used to being successful.
Anyway – sorry for the ramble. I am having trouble with my rheumatologist and I’m pretty sure it’s not because I am shy.
So I am going to have to try something different and I like your letter idea. My doc is brilliant and overworked and I appreciate him but somehow he doesn’t see me or hear me any more.
With your creativity and verve I hope you will find a way to reach the whole community of RA docs – maybe through a College of Rheumatology event or the good old Arthritis Foundation.
It is important that doctors and researchers hear from a gorgeous, funny, squeaky wheel like you. Important for all of us and our kids if they don’t figure this out soon!
Best of luck and thank you for your fine blog.
Cheryl V
Cheryl,
THANK YOU! Thank you so much. :dance:
I so appreciate your encouragement today. I hope I can do just what you said.
Hopefully the Remicade will do you some good soon.
BRAVO! Well said. As far as the technician that hurts you… you need to report that. There is plenty of ways people can draw blood without you having to contort your arm to make things easy for them. I have gotten on my knees to get an IV in my patients – YES ME>>>>> THE ONE WITH RA. They are sicker than I am so I move to accomodate them. So please, either contact that person’s supervisor or take a minute to explain to them your pain. If you don’t get a better response, then go higher up. Blood draws hurt enough without the body contortion.
I want to tell you though… I am going to my Rheumatologist and I am going to tell him about this blog. It has been such a help for me.
Thanks for all you do.
Heather
Thanks, Heather. Thanks so much.
I admit I’m at a loss about the techs & the IV nurses. I always have at least one person with me so there is a witness. They are actually much rougher on me than I told in the post – because I was just trying to be funny. I know I’m not the only one since others tell me the same, so I thought we’d just laugh about it together. But you are sweet to worry about me.
I’ve thought about the “supervisor” thing as you say. So far, there seems to be retaliation if I even wince, so I try not to. Sad to say, I guess I’ve been afraid about what would happen if I actually complained since I “don’t look sick.” I have to say I’d never let them treat my kids or any friend this way.
Sometimes, when they are particularly rough, we walk to the car scheming playfully about how we can blog about their wrong behavior. OF COURSE, I don’t do it. 🙂
:star: :heart: :pizza: :pumpkin: i love you mommy :rose: :heart: roooooooooooooooooooooooo :soccer: :musicnote:
😉 roo wanted to send you smilies
Hehe. My little baby who can read! Love you Roo. 🙂
By the way the reply from Roo – THAT was awesome!!!
This is GREAT Kelly! I am now on the ‘hunt’ again for a new Rheumy. As I posted on another topic – I found out from a voicemail that mine is leaving ‘the practice’. My Pain Mgmt doc told me since I am an established patient in ‘the practice’ that I should try another one there first and if I don’t like the new one to let him know and he can refer me to someone else. Oh FUN!!
As I said in my previous post I feel like I just got dumped. Then yesterday I had one of THE WORST days I have had since the very beginning. I was at work and WHAMMO it hit me as surely as if someone had taken a baseball bat to my body. I could NOT sit at my desk for another minute as my hips screamed, but I almost couldn’t wait for the elevator to get downstairs (yeah I work on an upper floor – more FUN) The drive home was lovely – I had to stay in the right lane on the fwy because it was nearly impossible to press the gas pedal. Oh and did I mention there was road work so there were extra stops and more cars – almost more FUN than I could take. I dragged my body to the bedroom and begged my Cat to help me get undressed – he ignored me. I got about half of my work clothes off before I said…(oh wait I can’t say what I said) I took a pain pill and a muscle relaxer and a prednisone (which I NEVER take) fell into bed and slept for four hours. THEN I woke up to find the ONE predictable thing happening – the pain was moving from the right side joints to the left side – the MOST FUN EVER!!!
If I don’t stop having this much FUN soon I don’t know what I will do! (Sarcasm is one of MY favorite things Kelly!)
So this morning I am debating whether or not to go in to work at all since I am sure I will be leaving early.
Sooo wish me luck in my quest to find a new Rheumy that understands and that I can understand!
I am doing my best to ’embrace’ my RA – I want to embrace it and squeeze the darn life out of it!!!
Happy Tuesday to all of the Warrior Clan and thanks again Kelly for the chuckle!!!
Love the letter. You are much nicer than I want to be in a letter to my old doctor. I requested my records from my old rheumy to prepare to see a new one later this month. When I started reading through the notes I couldn’t believe it was me he was talking about. On every appointment it said that he had explained thoroughly – what? where was I when he was doing all this explaining? It said that I had refused an MRI – he NEVER said anything about an MRI. It went on and on. I know my name is at the top of each page but he must have been talking about another patient. Now what do I do when I go to this new doctor? She will read all these notes and she won’t know anything about me.
Hey Becky, Thanks. 🙂
You’ve probably read the post about the doctor’s notes already. I’m sorry to say I’ve heard similar stories so many times.
Here’s how I handled it personally: I gave the new doctor a brief, neatly typed history of my RA / treatments / symptoms, etc. I said that I read over the notes from the previous doctor and that they are not accurate. If something is really important, I point it out.
If communication about this goes well, I’d consider that a good sign.
Did you see this NY Times article??
I sat and wrote a “Dear Doctor” letter May 24th, 2010. It all started after I had passed a kidney stone and was told in the emergency room that I was very anemic. I called my Rhuemy the next day and got right in. He asked me the usual about pain, stiffness, fever and such. He noted that I had trouble walking after going to the store.
If that’s all that I got in my file for that visit it was going to tell how I ache when I stand in my kitchen and cook for my family on special days. How I hurt when we take our grandchild to the zoo.
I wrote three pages, it’s starts with how I feel and when I feel my worst and best. Section two is what we as a team are doing to attack my PA, then section three is what I want out of life. I felt wonderful when I finished it. I faxed off to him and it felt like a 100lb bag of sand was lifted from my shoulders. I had a visit with my primary care doctor that same week, he got a copy, as well as the Gastrologist that I went to the following week. I am now on a crusade to tell my whole story to every doctor I am going to. I attach a list of my meds, with dosage and why I take them. This also saves me time when I fill out the forms and for each visit. I am updating the letter so now I guess it’s more of journy log.
If you have a good relationship with your doctor then you must do this. It will also help if you ever need to get Government assistance because the Doctors notes have to have all information about your progression.
Empower yourself and be your own advicate. I will let you know how my next meeting goes with him this week. It will be the first one since I sent him the letter.
Stay strong,
Sue
Wow, Sue. I felt empowered just reading this! Yes, let us know how it’s going.
MizKitty…I am so sorry that happened to you. I had a situation too recently like that, and was telling my husband– who told me he always shakes gently at first and explains it’s because his wife has RA and most people who don’t look at her hands would even know it, but he knows how painful it can be. Most people seem to then appreciate the fact a firm handshake is not always necessary–you never know!I was so honored he did that and never even knew.:) :hugright:
Nancy
I liked your letter so much I pasted it to a Word page.
I could have used this about a week ago. Yep, new rheumy. I had spent a lot of time researching RA with a secondary Sjogren’s Syndrome. I was told by my opthamologist and my ENT that I “probably” have Sjogrens Syndrome based upon my symptoms, and the severity of the symptoms. My problem is – Ta Da! I’m sero-negative! Because I can’t be diagnosed easily, I’m delegated to the waste basket diagnosis, whether I have it or not. This one told me right out flat “you do not have SS” I asked why. She said, because it didn’t show up in your blood, and besides, your dry mouth is caused by all the paid meds you take. I wanted to scream. Then I wanted to say, can we, just for a moment, pretend that I do have it? What would be your next move?
Honestly, I have so had it with these so-called specialists.
Dear Kelly,
Thank you for such an articulate and truthful expression of what we all feel (I suspect- in varying fashion) as we go to our Rheums, our labs, etc.
I am a professional biochemist, with a career shortened by RA ( which, after two spinal fusions and a right knee synovectomy, chronic migraine from age 13, idiopathic urticaria, photosensitivity, and a scortching case of pneumonia at 16—- all before I hit 35), ought to have been spotted- diagnosed, right? With my training, I BEGGED every orthopedist, neurologist, rheumatologist ( multiple docs- all of whom took blood and despite overwhelming empirical evidence, dismissed me as I was- and still am- seronegative) to look DEEPER—- I was given anti-depressants and sent on my way.
Now, as I approach 40, (with a stylish camo-print cane)I find I can’t get rid of the anger at what has happened. I have a wonderful rheumy; he is brilliant and learned, but even so, he STILL DOESN’T FEEL what we feel! My BP is too high ( duh- I’m awaiting a hand squeeze that will drop me). My blood work it variable- Vit D deficient one month; thyroid, the next….; I have tried (I think) every DMARD available: all have rendered me too ill to get to the commode. I started Humira—-YEAH!!!!!!! I lost 20 pounds of Prednisone weight….by vomiting every time I ate….and my swollen legs (at the injection site) are helped only by high-dose Benadryl. So- For a week I’m conked on diphenhydramine; then I’m conkied from Humira. But I have 5 or 6 “better” days than I had before. Oh- and I don’t think I have cancer from the Humira.
We are a group of intelligent and passionate people. We suffer as we must drive to get a Schedule 2 pain script on a day when we ought not to drive, let alone make lunch, without help. We are denied insurance coverage for a lot of treatments. We are all people who had LIVES before this ill-begot disease. And I realized that we are still people with lives ( however different from our predictions!).
BLESS YOU for this site; for the members; for the info. Thank you for saying what we feel. Thank you for helping people who don’t know a TNF-a inhibitor from Vitamin C, as they embark on a journey of acquisition of knowledge.
Two final thoughts:
1) I have had 3 EMGs. All were unbelievably painful. None gave data that could be used as a diagnostic tool. I then had two DSSEPs ( next generation EMG- highly specific and less painful, though not fun, I freely admit). The DSSEP, however, showed with great accuracy where my spinal nerves were impinged, and how. MRI confirmed the DSSEP results. If anyone needs to locate a neuro who does DSSEP ( it’s costly, so big cities are the best bet, unfortunately)PLEASE share my email, or contact me for info. I will query the neuro who ran it in Chicago and find out who else does the test. I had stellate ganglion injections ( had neck herniation as well) to treat RSD from the herniated discs at C3-4 and C 4-5. They made me far more ill. My left arm and hand “go out” all the time. My lumbar spine is fused from the coccyx to L3 and the DSSEP showed the left side nerve impingement and loss from that surgery. call me the Bionic Woman!
2)Pain management is critical to all of us- I, for example have my own set of issues- as each of us has- but we live in an age where we can fight back at pain, more than ever in history. And yet: my pharmacist (after years of knowing me and my docs) STILL tries to lecture me monthly about the dangers of OxyContin and Dilaudid. I give my repeated answer:::” Because of these medications I can stand here and despise your ignorance, rather than languish in a hospital bed.””” They work for ME– not everyone. But I can think clearly with these meds ( and thank GOD I’m nearly off Prednisone- has taken three years and down to 2mg/day!). If I take an SSRI, a Gaba-nergic (Neuronti, etc.), I have an acid trip equivalent. On my meds, I can at least THINK and stretch and eat (when not on Humira…..and yet after a month off Humira, my joints have seixed up like the damned Tin Man. Not sure of the next step there…). I have never lost a script, nor refilled it early, nor asked for a dosage that made me high. I keep my dosage slightly sub-therapeutic so I can have rational talks with my docs. WHAT? I am, in essence, apologizing for my pain—asking for a smaller dosage than I truly need. I am selling myself short. And I am a damned biochemist! I KNOW better!!!!!!!!!! So—with the help of this wonderful blog- the combined support of members and of my husband, etc., I am no longer going to victimize myself. It’s time to “take up arms against a sea of troubles, and by opposing, end them”.
I can only thank you again and again, Kelly. May all the Gods and Goddesses and the light bless you- and bless us all.
If anyone wants to talk- email me— I have hidden away for too long. Peace to all
Nicole