Tuesday, December 1, 2009

An Open Letter to My Rheumatologist

Draft 1:
Dear Dr. Hack,

Let's start here - You suck!!!

-RA SB

Draft 2:
Dear "Dr. Mommy,"

My PCP has given you that nickname because you INSIST on leaving at 1:30 each day to see your kids! As he says, running a rheumatology practice is NOT ON PAR with running a boutique. You CANNOT be a part-time dr. Either increase your hours or STOP TAKING new patients. I'm tired of suffering due to your negligence!!!

-RA SB

Final Draft:
Dear Dr. With Whom I have Entrusted My Care for the PAST FOUR YEARS:

I am not sure where things went off course. Perhaps it was the day that I turned to you out of frustration at keeping my household going with a small child and 1 income and you suggested I hire a nanny. Perhaps it was sometime last year when you sent me to your cousin, the boy genius neurologist whom ran no tests, told me I was high strung and then put me on a medicine that caused a drug interaction even though I tried to warn you both that it could happen. Or maybe it was your even more recent infraction of telling an ER doc that you would see me for a follow up on Monday for an acute flare, only to then call my husband and insist I see my PCP instead as you will be headed out of the country until the new year and could not possibly squeeze me in at all.

I do realize that my RA is "overly symptomatic" as you call it, or "high maintenance" as I prefer to call it, but that does NOT mean I like it any better than you do! In fact, if THE CLOSER lined us both up and questioned us for hours regarding which of us HATED my demanding symptoms WORSE, I am almost positive it would be me, and then me again and again!

I HATE being in constant pain. I despise being tired all the time, but what I really really hate is facing a row of bleachers at a town football game and realizing that I could quite as likely fall flat on my face in front of the entire town as I would be to reach one of those and sit down in time.

I am young. I am beautiful. I am intelligent. I am a mother and a wife. I want a life. I want what you have.

What I DO NOT want is to be made to feel as if I am not important enough for your time. I do not want to feel like my husband and I are asking for too much for you to recognize when one treatment is doing NO GOOD and agree to try something else. We do NOT want to hear for FOUR YEARS that things will get better while you stall your referral to someone more qualified or consider blankly telling me to gather temporary disability while we figure it out. Because while you have gotten dressed every day in your lab coat to play doctor for five hours a day, I have lost my savings, my home and my pension. I have watched family walk away distraught at how to keep helping a young struggling family. I have had to face realities about illness and loved ones and have had friendships tested at levels I should NOT have had to have seen so soon nor so often. I am exhausted. And I am angry. I am so so angry.

I want you to GROW UP and recognize that if you want to have a practice that solely delivers steroid injections to the knees of osteo-sufferers so you can run home and see your children by lunch every day then you NEED TO PRINT THAT UNDER THE NAME ON THE DOOR!

Good-bye and good luck. I am doing what I should've done long ago. I have taken my 382 page file and I'm moving upward and onward. Please, please...see through the anger and frustration and know that if you are not willing to help your patients, you are only hurting us.

And before you ask, YES this is going to affect your standing on ratemydoctor.com!!!

-RA SB

14 comments:

  1. Go, you!

    So glad you're moving forward. I hope you soon find someone who will actually do their job and take care of you. We all deserve that.

    On another note, your PCP is awesome for giving her that nickname.

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  2. Yeah, it took me a while to reach that stage. I guess I'm fortunate in that I'm slightly more impatient than you are, and it only took me a year and a half to ditch the asshole I was seeing for a more qualified RD.

    Good for you, though!

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  3. Great letter, SB. You're absolutely doing the right thing, looking for another rheumatologist. Working out which drugs work and which don't takes months and even years, since we all react differently to them, and that's hard enough to deal with as someone who has to cope with this disease. To have a doctor pass you off to some other doc or change appointments on you, or make it difficult for you to see her or, especially, as yours did, not even begin to understand or acknowledge the hardship this disease is causing you and your family, is unacceptable. I hope you actually send that letter. She should be made aware that she's hurting her patients, not helping them.
    -Wren

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  4. I hope your new rheumatologist is able to help significantly more than your old one. What a horrible situation!

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  5. My first rheumatologist was a jerk. I ditched him after 9 months and luckily found a good one who I have been with going on 6 years now. It can be a bit overwhelming trying to pick a good doctor even with all of the resources that we have today. Doesn't sound like finding a better one will be a problem, but I hope you can settle down with a really good one this time that can make a difference for you.

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  6. Thanks guys! Uusally I am not so long to act with things in my life, but you know how complicated our diseasess can be. It always seemed so overwhelming to leave in the middle of a treatment or the start of the new one!

    But this last time when all the drs. are actually taking RA VERY seriously due to the quick downslide this year, she's consistently harder to get ahold of. It is now not just hurting me, but making the drs. angry. It is past time. I'm sorry I didn't do it earlier. Maybe I would'nt have have had to get to this point. Though who knows?

    This new guy agreed to see me pretty quickly which surprised me, but then again, we always get greeted warmly the first year. It is when the RA refuses to be treated that they start dreading seeing me! I feel like my RA is some bad child no one likes for me to bring in the door!!!

    But, my new hope has been to get a Dr. House - someone that will see my RA as a challenge he wants to beat! Right?

    -RA SB

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  7. Good idea. You need a rheumy who hears the words that come out of your mouth. Your health will not be sucessful without that. I wish you luck on finding a better rheumy who will listen, understand, and address your concerns.

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  8. my first rheumy whom I refer to as "jackass" and "idiot" was fired when he kept claiming I had fibro even though my ESR and CRP were elevated. Yes, I fired him :) He is the only one in my town and I have heard of others having problems with him and their condition being dismissed. One girl had lupus and had lost soooooo much weight and was very ill...he said nothing was wrong with her...she went out of town and was diagnosed with lupus and is now on treatment doing good. I travel 1-1/2 hours to see my rheumy now and it is worth it...he is great :) Yep, you have to take control of your health...some docs aren't worth your time or money. Best of luck with your new doc...PS, if you dont like the new doc..fire them too...find one you do like :)

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  9. My first RD gave the diagnosis to another doctor on the phone while i was sitted in front of him with my lab results ( wich were clearly not good) instead of me!!!! He then went on to make me fill in a questionaire " to see how disabled I was" This words came from his mouth in our 2nd appointmet even though i had told him I was struggling with depression!!!! What an asss!!!!
    One good thing came out of AR, is that I no longer put my hole trust in doctors. Imust have seen 2 dozen doctors before that idiot, we as patients need to be more actives about aour health. At least I did. so shoul you.

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  10. I've only just come across your blog, and I love it!

    I completely sympathise with you here, unfortunately the Dr. I am currently seeing is totally useless, I actually made my own diagnosis and solution, and months later, yes turns out *I* was right.

    Some Dr's can be such assholes, but think they are so high and mighty just because of their job!

    http://whatihateaboutmera.blogspot.com

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  11. i applaud all of you in walking away and posting. i have wasted many years on incompetent doctors, who resent an intelligent person who does their research and zeroed in as to what was going on in her body. after all we all know our own bodies,only to have doctors laugh at me, and sugguested a pill to calm down.i went to an environmental doctor who performed all the right tests and found out what was happening to me as a result.when i went back to my regular doctor, he laughed and said they were quacks. that was the time to find another medical doctor who listens and does informed research himself.they are extremely hard to find as doctors are only out to increase their paychecks by taking on new patients as fast as they can.it is indeed rare to find such a doctor. i fire them after my first visit, as i can now tell immediately if they are the one for me. i have diagnosed my early symptoms from having oxidized stress, which was never diagnosed,as i ran from doctor to doctor. it has now progressed to where my immune system (DNA) is altered and now have a serious problem. i now have a female doctor who is known to really listen to her patients. She has my highest respect and after i see her a 2nd time, with my new research, i am sure she will refer me to the clinic that specializes in my problem.i am praying it is not the life threatening type. again i applaud all of you who don't waste their valuable time on poor doctors who can't see the light even when it is in front of them. good luck to you all.

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