Im not sure I should have sent that email

theresa4 · 31. May 2011, 08:47

As most of you know Im having a rotten time at the minute and some of you may recall my rheumy appointment where the doc all buit called me lazy and needed excercise.
Ive just sent an email to my rheumy nurse outling how wretched I feel and that my quality of care has gone downhill in my opinion since I first attended. I even put that I didnt decide to give up all the fun things in my life and expand my lovely figure on a whim.
I also pointed out that the doc I saw seemd to be saying I had fibro not RA even though the fibro symtoms started in the last year and the RA symptoms started in 2006. And they were what The main consultant dsaid were classical symptoms. I then challenged them if they felt the diagnosis was wrong tell me what it really is so I can find a way to fix it.

(I know its classic RA sero neg I know my body but I was so angry)

Im now very worried at what they will say the email was done in anger and frustration and I intended to save as a draft as I had been adding to it for a few weeks as a cathartic excercise but I got more upset and tearful the more I typed and so angry I pressed send. :shock:

What should I do?

Poppyg1rl · 31. May 2011, 09:00

Theresa, you were honest. Nothing you put in your e-mail was untrue. It's a good thing that your nurse knows how's much pain you're in and how let down you feel by the rheumatologists lack of care. Sometimes you have to 'take the bull by the horns' and challenge those meant to care for us when FAIL to do so.
I know you will be worried but quite honestly, they needed to know.
In my humble opinion, (and it is just that) you did the right thing Theresa.
We are here if you need to talk anytime, love and hugs xxx

theresa4 · 31. May 2011, 09:05

Thanks Poppy
Im just worried that theyll remove me from their service as the other hospitals service are notoriously bad. It was in my opinion just a bad appointment with a crap registrar who barely spoke english (I dont have issue with this normally but sometimes the english language can be difficult to understand emotions and emotive language). On top of that the consultant I saw seemed to avoid eye contact with me as she said she wanted to wait to decide on further treatment options without really asking what I felt or what was going on with me.

jackie1955 · 31. May 2011, 09:12

Hi Theresa,
Well look, the email has gone now so do stop worrying about possible imagined consequences.
You have a right to ask questions, and to be treated in the first place with dignity. Its your body, your life, and obviously you want to know what your diagnosis is and that you are recieving the best treatment for controlling your illness.

Lets face it, as in all walks of life, some professionals treat patients with courtesy and compassion whilst others can come across rather high and mighty - and should you dare to ask a question they can be very snotty and patronising! But remember (despite what they themselves may think

) they are only human after all.

Now I would say relax, don't do anything more, wait and see what reply or feedback you get from the person/department you sent it to. Don't be apologetic if anyone contacts you! Stand your ground, and what should happen is that someone firstly acknowledges the receipt of the email and then the department head should look into the points you have raised and come back to you within a reasonable time scale with some answers.

Have conviction in your action Theresa, I've learned this over the years myself! I know its awful doing something then worrying endlessly about whether you've done the right thing, but equally not to act can make things take on even bigger significance and can impact on your mental and physical well-being.

Be strong

Jackie x

theresa4 · 31. May 2011, 09:19

Thankyou Jackie
Maybe you should move in with me and give a kick up the backside for all the things I worry about saying. Im a bit of a wimp these days (never used to be) my confidence is knos=cked for 6 and it hard when my life is in their hands. ( i Know not literally but you know what I mean).
I suppose I should have said something in the appontemtn but I just ended up in tears. I so need someone to go with me next month so I feel strong enough to open my mouth. ALthough my appointment could get cancelled now :shock:

oh well as you say Jackie just wait and see.

fudge · 31. May 2011, 09:35

Hello Theresa, I think you did well, you put how you feel in black and white
I really hope you get some decent results from your email, you are still young and Should have a decent as possible quality of life, which bless you is not what you have now.

Have you tried asking for copies of the reports that various doc's who have seen you have written - to clarify your diagnosis once and for all?

Don't worry yourself into a worse state, blood tests and xrays will show them what is going on in your body - and they can't refute those. They should also consider the other health issue's you have.

Hope you hear back soon, you know Theresa, this is you taking control of your life - ((()) good for you.

fudge

julie47 · 31. May 2011, 09:51

Hi theresa

well done you is all I can say. Sometimes it is easier to write what you feel, rather than speak face to face.
Hopefully your nurse will read this and perhaps send you an earlier appointment to talk things through. She may even call you.
You have said that you are taking some one with you to the appointment next time.....good, that will give you confidence and also they will remember the bits you miss.
Remember also to write a list.

Take care
Juliepf x

elainebadknee · 31. May 2011, 09:57

GRR...I just typed a response and this forum, someone else must have posted reply at exactly same time, mine got gobbled up, thiers didnt!!..

Okay Theresa

I would say hand on heart you have done the most correct thing. Ookay you may have been a bit angry and a bit fed up to say the least but sometimes i think thats when people can put their thoughts exactly as they feel down the best...As long as there's no effing n jeffing, naming certain people and put in a constructive way its fine...
I was in the same situation last december...I need new knee had been to local hosp, consultant there wanted to take out my kneecap, no info and didnt want to know me if i refused...I sought second opinion and all seemed well until he said to me im too young (42) and carry weight (correct)....I walked out of that place two weeks before christmas and thought "oh my god how am i going to live with this pain" as had been told they wouldnt act till i was in my 60's.....I couldnt see a bright way out, i waqs totally hacked off to put it politely....Well i sent an email to that second consultant as he had seemed initially more empathertic than local man...I cried as i typed my email but i put down i need some help here, i cannot wait till im in 60's with this pain.....I also put down that i wanted to be reasonable and find some guidance as to how to help me achieve my goal....I got an email back within 3 weeks saying he would see me again, i went and he told me if lost small amount of weight (nobody had told me before what i had to lose and i thought it was several stones) that when i reached that he would do tkr and he said that he was on my side and there to help me....
I also complained abouy local man, as his attitude was awful, that is a work in process as we speak..

Im so glad i did those two things and i did them when i reached my wits end...Dont you worry one bit, i beet it gets positive feedback....Let us know..

Elainex

theresa4 wrote:

As most of you know Im having a rotten time at the minute and some of you may recall my rheumy appointment where the doc all buit called me lazy and needed excercise.
Ive just sent an email to my rheumy nurse outling how wretched I feel and that my quality of care has gone downhill in my opinion since I first attended. I even put that I didnt decide to give up all the fun things in my life and expand my lovely figure on a whim.
I also pointed out that the doc I saw seemd to be saying I had fibro not RA even though the fibro symtoms started in the last year and the RA symptoms started in 2006. And they were what The main consultant dsaid were classical symptoms. I then challenged them if they felt the diagnosis was wrong tell me what it really is so I can find a way to fix it.

(I know its classic RA sero neg I know my body but I was so angry)

Im now very worried at what they will say the email was done in anger and frustration and I intended to save as a draft as I had been adding to it for a few weeks as a cathartic excercise but I got more upset and tearful the more I typed and so angry I pressed send. :shock:

What should I do?

theresa4 · 31. May 2011, 10:13

Thanks Elaine Julie and Fudge

I am yet to find someone to go with me for my next appointment my hubby is flat out with work and I dont want to add to his stress as hes starting new jobs around that time (weve not had any work (construction) for 5 months so its important hes on top form). There are few others who i would feel comfortable talking abput all the problems im having. My freind who is ill herself has distanced herself from me at the moment not sure if thats her or me but I have enough to worry about. One friend I could talk with is a headteacher so she wouldnt be able to come with me. The other is a social worker and starting her new job as advanced practitioner next week so she wont be able to come either. Ive started to type things down so I have soemthing to take with me if Im on my own.

constable · 31. May 2011, 10:31

I'm putting in my pennies worth and agree with everyone. You have so much done the right thing, good for you. They can be very intimidating and you come away not really knowing anything more. And yes you should wait to see if you get any response and if you do be strong and tell them you want this sorted out.

I do agree that It is a lot easier to put things into a letter or e-mail.

Dont worry any more be proud of what you've done and let us know how it goes.

Karen xx

tkachev · 31. May 2011, 14:14

Theresa from what i know about you you have been a very hard working mother of 4, helped yours and your husbands business, always been there for relatives children and now a grandmother with your grandchild living at home.(this is from memory so I might be wrong). I can't help thinking you havedone more than your best at all times. Now you didn't ask for this awful, painful arthritis and people need to treat you with respect.

I hope they sit up and take notice!

Elizabeth

ironic · 31. May 2011, 17:12

Hi Theresa,
I cannot say much more than the others have said. It may well be the best thing to have done. In my experience the Rheumy Nurses are very good and they know what is going on in their department. Some of the registrars are not brilliant and I think quite a lot of us have found that out over the years.
Try and not beat yourself up about this Theresa. I know the terrible stress and worry that goes with running your own business and I too feel guilty at times not being there for my husband especially while times are so tough out there.
Lv, I x

carola · 2. Jun 2011, 09:50

A good handful of months ago I did a similar thing.

I had a rubbish rheumy appointment where she concluded that I should give myself a shake, stop focusing upon my lupus and arthritis, get back to work and get on with life.

I told her that she had rendered me speechless, hobbled away and sent her a letter which I copied into my GP.

She contacted me a few weeks later having read my letter and told me that she now understood a bit better the impact these illnesses have had on my life as well as my body.

So, personally I think you have done the right thing and that as long as we are not abusive then the specialist should by and large welcome our input.

Carol

lavenderlady · 2. Jun 2011, 12:34

well done you , you had the confidence to send it hunni but are now worrying about making the decision to send it , I personally think you did really well by sticking up for your rights, pain can have a real bad affect on you so they need to know you are not the lady who comes in with a smile and does not push herself thats not your fault but a part of having arthritis, the damn illness strips you of every ounce of confidence and we let DRs etc get away with murder ( MIne are wonderful luckly) and reading what you went through angers me , I keep telling people dont question how bad you feel with arthritis unless you've had it ,
I now know what my wonderful nan went through years ago with OA and RA bless her and wonder how she coped with her 5 noisy grandkids,
I even saw my DR a few weeks ago and told him I cannot cope with this pain anymore and was very down, he altered my pain relief and said to come back if I feel the same , good luck and be strong xx

theresa4 · 3. Jun 2011, 06:41

Hi Thankyou all for the lovely support.
Firstly Elizabeth you remmeber me so well I wish my memory functioned :sad: :roll:

secondly it seems im either being ignored or shes on holiday although she normally puts ne of those message things on that tell you Im out of office....
Im not sure if she is waiting for my actual appointment on the 14th to bring it up in front of the rheumy as that is what she did last time (I thought she had ignored my email as it was 6 weeks to my next appointment) I hope she is not doing that again as I dont want that confrontation in the consultation room first off. I still dont have a confirmed person to come with me. now Im feeling worse and to top it off my bowel problem has got much worse and Im waiting for my GP tele consult with my 2nd fav doc as my fav is on holiday. its in the next hour or so and she will probably make me come in. I cant eat anything at the minute just keeping fluids up.

oh joy..

elainebadknee · 3. Jun 2011, 09:13

Theresa

You sent it 31st may right? Well it was bank holiday and if this person has kids then she may be on leave, just a thought....Also did you not copy the email to someone else too, i would have thought a customer care part of hospital or someone else in charge? Plus if you havent had an out of office reply then she obviusly is off....
I dont think you will be confronted on 14th...Im sure all this worry isnt helping your bowel problem (i dont know what it is but i got IBS and stress makes it worse).....Please try and contact someone else at hospital, or your doc???
Sorry youre not well...

Elainex

theresa4 wrote:

Hi Thankyou all for the lovely support.
Firstly Elizabeth you remmeber me so well I wish my memory functioned :sad: :roll:

secondly it seems im either being ignored or shes on holiday although she normally puts ne of those message things on that tell you Im out of office....
Im not sure if she is waiting for my actual appointment on the 14th to bring it up in front of the rheumy as that is what she did last time (I thought she had ignored my email as it was 6 weeks to my next appointment) I hope she is not doing that again as I dont want that confrontation in the consultation room first off. I still dont have a confirmed person to come with me. now Im feeling worse and to top it off my bowel problem has got much worse and Im waiting for my GP tele consult with my 2nd fav doc as my fav is on holiday. its in the next hour or so and she will probably make me come in. I cant eat anything at the minute just keeping fluids up.

oh joy..

barbara12 · 3. Jun 2011, 09:53

Oh Theresa
I think like some of the others, I am glad you pressed send, maybe if you had carried on you would have chicken out sending it.
At least when they see you, it gives you a chance to let then know how down you where...and I think the email will add to this.
Good luck with everything

lavenderlady · 3. Jun 2011, 10:25

you really need some good and helpful advice right now you are suffering so much lets hope you get that and soon can your DR or even the practice manager of your surgery not get some one who can accompany you to your appointment, there has got to be someone who can come with you for added clout, wish I could come along and stand up for you, I do hate this sort of issue when we are all suffering with arthritis, we dont need any further problems it can at times tip you over the edge and depression can start creeping up on you, keep us updated and good luck x

theresa4 · 3. Jun 2011, 11:21

Hi all thanks again
Well my GP did little today but prescribe soemthing similar to fibogel :roll: I dont think the telphone consult was enough really I have an appointment with my preferred GP but that is on 14th June before my Rheumy appointment. :roll:
I know she could be away with kids but she usually does put that return email on if shes not in before any holiday The only times I havent had a reply is when she doesnt want to deal with it on her own and she wants to bring it up with rheumy on appointment date. Im just not looking forward to the appointment anyway Im down because my stomach is really swollen and painful I cant fit into my clothes because of the swelling, I havent eaten anything for 2 days now and the meds my GP has prescribed are to be taken after food

I just feel like cancelling and hiding away ( i know not realistic). Just waiting for the hole in the ground to open up and swallow me. :sad:

stickywicket · 3. Jun 2011, 12:22

Theresa4, some of what you're feeling must be due to the nasty stomach problems you're having. You're bound to feel awful in your current state. I'm sure you don't have to take much food for the fibogel. If you could just manage enough to get it working maybe you'd feel a little better in yourself. I do hope so.

tillytop · 3. Jun 2011, 12:58

Oh Theresa, I am so very sorry you are feeling so rotten at the moment and have so much to deal with. I really do understand the feeling of wanting to cancel the appointments and just hope it will all go away - I am a very good ostrich! Last year, I had so much health "stuff" going on that I didn't know which way to turn so what I tried to do was to focus on one issue at a time. Difficult to do, but it did help me to cope and to feel less overwhelmed.

It seems to me that your stomach problems are the immediate concern and you have taken a step in the right direction by seeing the GP and getting some meds - which may help if you can manage to eat something to enable you to take them. If you are concerned about taking them on an empty stomach, or about how much you have to eat before taking them, could you try speaking to the pharmacy which supplied them - by phone if it's easier, to ask for advice? And, on Monday, if things are no better, would you consider making an "asap" appt with whichever GP is available to discuss the stomach problems in person, rather than waiting until 14th to see your preferred GP? I think you might feel a bit better about things if you have a definite "plan of action" , for example "I am going to speak to the pharmacist tomorrow morning and then give the new pills a go. And, if I am no better on Monday, I am going to phone the GP for an urgent appointment". That way, rather than just being adrift in a sea of uncertainty, you can take back some control of the situation.

As for the rheumatology appt and your concerns about the email, my suggestion would be to tell yourself firmly that you are not even going to think about that until next week, when you know what's what with your stomach. I know how hard that will be to do but I have found that, by trying to look at problems one at a time, it is easier to keep a sense of perspective, rather than being totally overwhelmed.

I don't know if any of that is helpful Theresa, but I am thinking of you and really hoping that things improve for you soon.

Lots love and ((()))s

Tilly xxx

tillytop · 5. Jun 2011, 17:13

Evening Theresa

Just wondering how you are and whether the stuff you got for your stomach has helped at all? Really hope so.

Thinking of you.

Love Tilly xxx

theresa4 · 6. Jun 2011, 09:19

Hi Tilly
Thanks for asking

Well none of my local chemist stock normacol so had to wait til this morning foer it to come in. the bowel pain had already calmed down a bit.

Still no reply from my Rheumy nurse :eek:

my joints are playing up rotten probably because Ive been taking less pain meds to avoid upsetting my bowel any more than need to

woodbon · 6. Jun 2011, 13:19

Dont' worry, sometimes an angry note will do more than anything to show your feelings. Doctors arn't Gods, though some of them seem to think they are, I know the type I've seen one at my clinic, unfortunatly hes the Clinical Director, or some such fancy title.
Try not to worry and put it to the back of your mind, if you can.You know the old saying 'its not the things you do that you should worry about, its the things you don't do'! Let the Bjjjjr know he's upset you and it might make him think about his attitude!!!

Lots of love Suexxx(((()))).

tillytop · 6. Jun 2011, 14:02

Evening Theresa

Can see you are online so just wanted to say "hello" and ask how you are doing? Sorry you had to wait so long for the stomach med. Really hope it helps - and soon!

Thinking of you.

Tilly xxx

theresa4 · 7. Jun 2011, 03:40

Hi Tilly
Must have missed this post somehow last night. Was trying to make an effort and answer some posts for others instead of taking all the time. My hands are killing me this morning.well as are the rest of my joints I haven't slept due to pain I'm exhausted but want to get moving as th e pain isn't letting up enough for me to sleep. On the plus side normacol is like granules slightly sweet but you don't chew just swallow a spoonful with water so I can tolerate it. Im still not sure it's what I need as I think I have a condition that needs checking but hey ho I
Just the pAtient and I don't feel like challenging any more docs right now.
Hope you are well Tilly and thNkyou for your continued support.

Im not sure I should have sent that email

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