View Full Version : When people just don't hear you.

09-08-2011, 10:46 PM
So, I've had a lot of migraines this summer. And last week I had one that wouldn't respond to the migraine meds for nothing. My neck had been inflamed pretty bad and my eyes too and both were triggering migraines. I went to the GP. They gave me a shot of medrol. But within an hour I couldn't take the pain anymore. I ended up in the ER. They treated me with toradol, benadryl, and something else. I was sent home. Slept two hours. Woke up in agony. Went back to the ER. They did a CT and found nothing. Treated me with the same stuff again except they gave me something extra to help the arteries open up more and one to restrict them which sounded weird to me. I go home and sleep six hours but ohhhhh.... could not get out of bed. I was told to follow up with my rheumy but I'm thinking the medrol needs time to kick in. Silly me! By the weekend I was still feeling so rough. Pain at the base of the head...in that joint. When I lifted my head for more than five minutes it would burn, searing pain, and it would travel up my head and around my eyes...and whenever I would do anything that put strain on my eyes or dry them out more like reading, they would hurt so bad that it would travel around my face. Before the weekend was over, both jaw joints were in agony. I tried everything... and have found that it's harder to get ben gay out of hair than I thought it would.

So Monday is labor day...no one was there of course at the doc's office...stupid me. I call Tuesday and get the doc's nurse. A nurse I've yet to meet there who kept saying baby and honey to me so much I couldn't stand it. She insisted I come in the next day. I told her no way, not in the shape I'm in, 2 hour drive to her office, and there's no way I can miss anymore of my classes. I have to force myself to go in Wednesday and at least stay five minutes so I'm not counted absent. I explain this has happened before and the doc called in some steroids and I was right as rain in less than a week. But she didn't hear a word I said and kept insisting this was horrid and scary and she would be afraid to even ask the doctor about it. So that revealed she hadn't even discussed it with her and I asked her could I have my doctor's opinion please?! She said she would try to ask her and get back with him. Late that night she called and said she talked the rheumy into calling me in a script seeing how bad off I am and the hours I would have to travel. No way that's true. I know my rheumy and once she heard, she said call it in. She talked to me like I was five years old with instructions on how to take it and if it's not better within a week I need to make an appointment with a neurologist or call the doctor back..."okay baby?" Ugh. The next day my lovely steroids were waiting for me and here we are at the end of day two and significant improvement just as before. I love my doctor and some people who work for her hear what I say but some of them, honestly... I'd like to ask them why they chose to get in the profession because it requires listening...and I don't mind being called honey but I hate being called baby by anyone other than my husband and she babied me over and over to nausea.

I got really behind with my classes. I get in touch with my ADA rep at the college but he's out of town for a while. So I personally emailed each teacher and told them I am a provisional student and applied for more time to turn in my assignments last quarter, and I explained what had happened recently and I was just now getting back up on my feet but behind in all four classes. I explained my husband is reading to me because of my eye damage but I'm not an auditory learner and he works night shift so it's slow going. Even made sure they knew it was bad enough to make me have to go to the dreaded ER and I was dead to the world for three days and miserable for two...(so much for celebrating my bday on labor day weekend...lol.) I wanted to know how much time I'm allowed to get my assignments turned in and take all tests. All teachers were great about it... except one. And it's a teacher that had made it adamant over and over to us the first day of class that she doesn't not accept late work for any reason! Not any any any! And she loves to pour the work on too which I don't mind... I like the subject a lot. She emails me back that she doesn't even know what provisional means and I have to turn in work on due dates. Now, I know my ADA rep told each one because I have a copy of his email to all of them. I emailed her back that she should have gotten that and not sure why she hasn't, but I'm supposed to get more time to turn in assignments when I need it. I told her this doesn't happen often. The past several months have been much better for me but sometimes my immune system just goes haywire and sometimes I can push through it and sometimes I can't...this is a time I couldn't and at the rate I'm going now, I'm pacing myself still. I'm not 100% but on my way and I could rush but I would rather get it done right and make the grade I know I can make. I left a message with the APA Rep. There I sat trying not to get upset about it. It just gets so tiring when people don't listen especially when it's about your health and you're miserable and worrying about what you're missing while stuck in bed. A while later I got a message from the teacher who said she gets it now... and that was it. Okay...she gets it. But how much time am I allowed from her I still don't know and waiting. I decided not to worry about it anymore. My ADA rep said if I have any trouble with anyone to let him know. I think I'm allowed something like time and a half of when it's all due, but not sure and not certain I will finish in time. I have three other classes to catch up in AND do the work load she laid out for us too. But why is it so hard for people to hear what you're saying when it comes to health? I often wonder do I have a whiney voice I'm not aware of and it just bores them? But everything else I say doesn't seem boring. So it's about the health issues and people get tired of hearing it I guess. I've accepted that some of my friends and most of my family don't really mean to find out how I am when they ask...they're just being "something" about it really...don't know what but they aren't really interested in hearing I'm dry as a bone and aching but okay or I'm miserable today and have to stay in bed. I can accept that people generally don't want to hear negative news and just ask to be asking. But the professional world....I'm still dealing with that and not too well. Any advice? Any encouragement to help me think back on the next time this comes up? I'm sick and tired of it.

I've got an appointment next week with my eye doc...and I hate to tell him but after nearly a year of this regimen for my eyes, they still dry out easy and ache like the dickens on the tops. I'm ready to bring up the obvious need for a change in the plan or adding something like maybe steroid drops for my eyes when they get so bad... they need to heal up better than this ...it's been a year in his care. He has usually seemed like a listener...but when you bring up stuff like steroids a lot of docs in my experience won't even go there...it's too dangerous. You'd have to be really really really bad off to get a script of steroids. And I understand why but it's been a long wait and I really need my eyes to be better or graduating is going to be a very long hard road and at times I wonder if I'm going to make it. My eyes are so damaged and so much sets them off. I'm typing this out without looking and then have my daughter check it. Lol. It's ridiculous!

Is there some trick to getting people to listen to you and really hear you out? I don't care if relatives and friends don't but people in the professional world that I need treatment from is different. I know better to even try to work with some doctor that won't hear a word I say. It's pointless and I just walk out and never return. But when people half listen and you do what they say and you try it...and you wait...and you wait...and you wait...and the same ol thing just isn't working? Or when a nurse gives you the impression she's talked with the doc but then reveals she hasn't and doesn't want to, even after you tell her we've done this song and dance before...baby.... I need some direction about because I just want to slap and say nasty things. The nurse didn't even hear me say the ER did a CT or anything.

09-09-2011, 02:11 AM
maybe you need a couple of "robs rockets".

they are to be used on all "expert" medical staff.

you dont need to ask where to insert them....... just guess lol

09-10-2011, 07:52 PM
My trick for getting past the office staff is to fax a letter directly to the doctor. If your computer doesn't have a program to do that, you can download a program (for a fee) that will allow you to fax Word documents. If you write directly to the doc, you can tell her exactly what you need her to know. I've learned the hard way, though, that you have to keep it short or you lose their attention. The next time you see the doc in person, you could tactfully tell her that you prefer that her nurse not call you "baby" or speak to as if you were a child. Request that she not identify you to the nurse. Chances are there are MANY other patients who will appreciate you speaking up.

09-11-2011, 05:22 AM
Hi Leslie,

I've been trying to come up with a way to explain how I avoid problems like this, and I'm not sure I can nail down some answers in a practical way that could help, but I'll give it a shot.

I think it's just a particular mindset that I've developed. I go into Dr.'s offices with the attitude that-

A-Most of the time, I know more about Lupus and what I need to treat my symptoms than the office staff, nurses, and some rheumo's do, and...

B-That I'm "running the show", and the staff and Dr.'s work for me, not the other way around.

In regards to my autoimmune disorders, I tend to tell the staff and Dr.'s, especially ones I've never seen before, what I need them to do for me, rather than asking them what they think they can do for me. An example being when I had to go to the E.R. a few months back for a really painful Trigeminal Neuralgia flare. I had been through it before, and I knew exactly what was happening. When the ER doc saw me, I told her about my various autoimmune disorders and that I was having an acute unilateral T.N. flare, and that I needed relief from the pain right frakking now. Instead of scratching her head and wondering how many batteries of unnecessary tests she'd order up in an attempt to figure out what was wrong with me, she ordered up the proper meds, and the immediate problem of pain was solved. She then wanted to run a couple of simple tests just to eliminate the possibility of a couple of other causes for this kind of pain. She wanted to be sure that she wasn't sending me home with a condition far more serious than a T.N. flare. She explained to me that it was more for her own peace of mind, and I told her that I agree, and that I had no problem with that at all. She listened and did not dismiss what I was telling her. After that, i was open to her ideas, concerns, and advice.

To say that I most likely know more about Lupus than nurses, office staff, and some rheumo's do might sound somewhat arrogant, and maybe it is. But the way I see it, is that these people may only see and treat a handful of Lupus patients in their entire career. I, on the other hand, have been living with this disease for almost 8 years now. I've read just about every book on the subject a couple of times over. I'm here every day reading, or talking to others about Lupus. I spend a lot of time making sure that the information in the "sticky" sections of each forum here is accurate, and comes from credible sources. I know the facts, and I know my own body. If some find my style a bit abrupt, or rude, so be it. My health is more important than some nurse's sensibilities or some Dr.'s ego. I don't have the expert technical knowledge that a Rheumatologist or other specialist has, but at the same time, they don't have the practical knowledge I have from my years of living with this disease. The ideal situation would be for both sides to share these two skillsets, and work together to find the answers and solutions.

Of course, there are times when I see the Dr. for something totally new and/or possibly not related to my autoimmune disorders. In those cases I defer to the Dr.'s experience, and I'm OK with them "taking the lead", so to speak. I've managed to build a good working relationship with both my G.P. and Rheumatologist, and I think we have a good balance between their expertise and my knowledge of Lupus from a patient's perspective. It's very much a two-way conversation with mutual respect that more often than not leads to a positive outcome, which is how it should be.

I hope my ramblings here can help you in some way Leslie.


09-12-2011, 12:48 PM
I just wanted to reiterate and add to what Rob said. If we do our research and learn as much as we can about our disease and how it affects us, learn about the medications and their uses and available treatments, how our Lupus affects us, then we will (most likely) know more than the doctors and nurses that we come in contact with.
I have always advised that we MUST become our own health advocates and develop a relationship with our doctors wherein we can tell them what we want, what we need, and (hopefully) work WITH them to manage our illness.
Like Rob, my relationship with my doctor (rheumy) is one wherein I basically tell her what is going on and what I want her to do. If she has a different opinion, then I insist that she take the appropriate amount of time to discuss it with me, explain her theories and/or intentions, and to hear my concerns and needs. If she does not want to set aside time to do that, then she must do what I asked her to do. When I put it to her this way, she seems to always find the time to sit down and talk with me(lol).
I am sorry that you have been going through this, but I do believe that once you become active, aggressive, and informed with your doctors, you may not find any more condescending attitudes or treatments. We are here to help you as much as we can.....I wish you the very best.

Peace and Blessings

09-12-2011, 08:41 PM
I appreciate you all so much. It feels good to just get it off my chest with people who know what you're talking about.

I love my rheumy. She's exceptional. It's just if you're not sitting in front of her, it's hard to get word to her. To find out they hadn't even checked with her, the nurses, and were going on their own assumptions... zeesh. They have one nurse there that I trust a lot. She really knows her stuff and hears every word you say but I rarely get her. I don't think it's arrogant at all Rob... I think that's what we're supposed to do. I've told many a doctor they're fired because they wanted to be boss and not hear me. Wish I could fire nurses. Those rockets of Rob's sound nice!

Thankfully I don't have to argue with my rheumy and that one good nurse but the other people in there you just want to smack sometimes. How many times can a person explain what happened, what the doc usually does about it, and then hear that they didn't hear a word you said and not only that, they're not asking the doctor which they should be, especially if it scared the nurse so much.

I don't think I can fax a letter to the rheumy but I'll see if I can. That would be really nice! They did have an email option at one time but it costs money and I can't afford it.

I have to talk to the ADA representative tomorrow at college. I have one teacher who doesn't understand what it means by I get more time to turn in assignments. He just keeps insisting it's due on the due date and if not, it's five points off each day it's late. Sigh! So sometime I have to squeeze in learning what my rights are with being a disabled student, something I really didnt think I'd need and now wish I had. The ADA rep told me to let him know if any of my teachers didn't comply because it's against the law not to but this one teacher is being difficult for some reason.

Thursday I see the eye doc and hope and pray he listens to me about my eyes. My husband said he'd go and be my back up about this past summer and that we obviously need to add some kind of treatment or try something else because at this point I can't even cry. I could but if I do I would be in agony. I am still so behind with my work with classes. I really need my eyes or at least something to keep the inflammation down when they get so inflamed. When I started the steroids for this last week I could feel a significant difference and everything is calming back down nicely including my eyes, but now they are hurting again. As soon as I started going down on the prednisone, and trying to catch up with my classes big time, (so much reading and lots of it online too) my eyes started aching really bad again. I really don't know where to go if this eye doc won't do something different. I guess Atlanta again....and travel hours away from home for medical care for that too. I can't think of anything more convincing to tell him Thursday other than how it is. If I don't use my eyes to read, cry, etc... I'm okay... we've been treating this for a year and I'm still miserable if I use my eyes for the basics, and I'm tired of taking so much migraine meds that are killing my GI tract... and going to the ER for the inflammation is where I draw the line. Something isn't working or we need to add something because this is awful. If he says give it more time again I guess I'll have to tell him he's fired. Rob, can I have one of those rockets for Thursday? Just in case? One for my teacher too?

09-12-2011, 09:14 PM
Rob, can I have one of those rockets for Thursday? Just in case? One for my teacher too?

Just send me the grid coordinates, and I'll call in an airstrike...

You know what's really funny? As I sit here typing this, I'm in my den, and on the wall is a display case of various rare or historically significant weapons, and right there in the middle, is a WWII Bazooka complete with an example of the rocket it fires (it's non-functional of course). So I actually do own a rocket launcher!

In regards to this teacher, as a disabled student, the ADA is on your side. Don't let her give you any s**t.


09-16-2011, 11:40 AM
My husband nearly drooled reading your reply about the bazooka, Rob. Lol. He loves WWII stuff. He's a big history buff of that period especially and used to own so many WWII goodies but had to sell a lot of it.

Looks like an airstrike isn't necessary. Before I could even talk to the ADA rep he said he had heard from the guy, (this teacher is a guy), and he had asked him questions about my status and the ADA rep told him about all our rights and that if he doesn't comply it could get the school and himself into trouble. The ADA rep was irritated about the guy and insisted that if anyone gives me any trouble to let him know and he'll take care of it. Whew! He was really nice and encouraging too and saying things like everyone should have a fair chance at opportunities in life. I later got a short note from the teacher explaining that he understands fully and I can have the additional time. But... do you ever get that feeling sometimes... that someone is going to be "less" to you because of something like this? You know how people aren't supposed to discriminate, especially at work, but it's like they find some way to make things harder "legally" as they can? That's the sense I'm getting from this and praying for otherwise. That instead of making the grades I know I can, he may judge me differently now. It makes me a little nervous.

The eye doc appointment was weird yesterday. He said the only thing we can do is instead of using Restasis twice a day is to now use it four times a day. I wasn't happy with the appointment or his listening skills. I need to find another opinion. He could be right for all I know but ... that seems like a lot of Restasis and the explanation left me with a lot of doubts.