View Full Version : Let down...Big time....No point anymore

07-16-2009, 12:38 PM
Hiya guys,

Went to my rhuemy appointment today, it was the worst appointment ive ever been to, once again not seen by the organ grinder....i was seen byt the monkey!

I told them about my back problems, how ive had to go to A&E and my drs to help me, he said he is going to send me for an MRI after seeing the results of the Xrays, he still insists this is not lupus related, (the pain came out when i was diagnosesd).......1st whatever!

I told him all the symptoms come back, im sleeping thru the day again! feeling sick all the time joints aching no memory, (but wernt today or swollen, so apparantly im fine!) he asked me if i was working, i said What? are you serious? i dont have a life anymore because of the pain im in, i cant even get up to do my housework let alone get up for work........2nd Whatever!

He even yawned whilst i was talking to him!!

I told him what was the point of me taking mtx when im not reaping any benefits from it, he said he would put it up.......BUT DINT!

He then got ready to send me on my way, till i said HANG ON....any chance i can have the predisolone back? he said NO theres no point taking long term predisolone is not good for me, and from the last time i saw you you've put on weight so im not gonna put you on them....at this point i piped up yet again saying: "Ive put on weight cause im not active, i dont have a job anymore so im not excercising like i was when i was working! (by this time i broke down into tears) do you not know what this is like for me? every day apon waking i firstly thank god i woke up followed by doing a body check so i know how my day will pan out for me, then if im in pain i take pain killers all day but (i explained) they only last 20 mins then i have to wait 4 hours for the next dose, YOU cant leave me in this way, ive had enough of this stoopid lupus and i cant go on another 4 months without any sort of help!!!"
"All im asking for is another course of flamming steroids, ive not been on them for 3 and a half months now can ya not give me that!!?? or do you want me to have NO LIFE!!!"

So he said he would....YEAH DAMN RIGHT YOU WILL, by this time i thought what is the point of all this!! why am i not being seen by MY rhuemy why am i being seen by this idiot who dont even know me!!?? so he gives me a course of predisolone to take for a month (tapered) and sends me on my way....hold the phone i said i aint finished!!

So he then says what is it now? i told him about the burning sensation i get in my shoulders and shooting pains in my legs and arms...by the look of his face i knew what he was gonna say so i said it first "But i guess your gonna tell me its lupus related arnt you? because i dont EVER get a proper reason for why its hurting OR whats going on with my body"

I walked out that room saying right well about time i see a LUPUS specialist then isnt it?

I tell ya...after my MRI and results im going str8 back to my GP and asking to be referred to St Thomas' in London i cant take this anymore, i get the feeling summin bad is gonna happen....im usually right with that, also i dont get to see him until the 17th December, he said after my MRI appointment if theres nothing seriously wrong then they wont contact me b4 my app in december, if it does show summin then they will call me in and send me off the see an orthapeadic person.

Right im bored....completely fed up with all of this, but thankfully i got what i was given both the steroids and what i thought all along.....If it aint rhuematoid artharitus then they aint intrested or bothered with you, Which makes me think...what is the point!?


07-16-2009, 01:14 PM
Head hugs..Jane. I am sorry about the arm wrestling with the doctor. I don't understand why doctors are the way they are and why is everything up for debate with them.

If it is God Complex like I've heard mention..sheeesh they get their knowledge from a book written by man...information obtained by people like us... the sick...

I felt exhausting reading your plight...I took a deep breath thinking about my appointment on August 3rd. Gearing up, for a road trip to hello. I am in the market for a new doctor...so hopefully the 3rd will be jackpot.

Regarding the x-ray....the x-ray won't display any herniation. Will though for Arthritis..disk degenerative disease...and etc. MRI is for soft tissue. I do hope regardless of what the x-rays yields I hope they will order an MRI for you....

Have they every tried cortisone shots in your back? Last year I had 5 in one vicinity..middle upper back, between the blades. Helped, but it isn't permanent for some. I am one of the some. Need the jabs again.

Rest, relax...deep breaths and try to take my Basketball crown from me...

Love ya..

07-16-2009, 01:47 PM
Hello MO

Now thats nice just what i wanted all along...to be treated like a person not a time waster!

Sorry i forgot to mention about the injections of cortisone to my back he did mention that he just wants to rule out its not nerve damage also.....il stay with him for tht one!

Im rooting for you with your appointment, i hope you get things sorted for a change, i will be thinking of you not long now

in regards to your crown....i see ypu have seen the secret to the game, took me ages to work it out til "i read the instructions" lol

peace with you


07-16-2009, 02:10 PM
No, I don't read instructions...Practice love, practice. Get the finger action going and viola. I didn't make it to the 4th 1/4....wonder if I had would have I broke the machine....

I'll have to read the instructions and maybe get a holy wow score....BRB...Hugs.

07-16-2009, 02:12 PM
Ah, you dawg you took it...lol. I'm coming for it, now I really have to read the secret...BRB with MY crown. OXO

07-16-2009, 02:13 PM
Oh, I learned the secret before...here I come....

07-16-2009, 02:46 PM
Hahaha too funny....



07-16-2009, 02:58 PM
Ugh..I fell flat...but there is tomorrow. Oh, BTW..I figured out why my insides were shaky. I took a wate pill to drain my legs and finger and didn't chase it with my potassium...could be, could be. So, I dosed...

If feeling fine..I may have a go at it before nightfall...and you may just wake up with a lighter head. One less crown...


tiggerlishus - Heidi
07-16-2009, 03:00 PM
hay babe sorry to hear you had as ruff as time as i did with mine glad you had guts to stick up for your self and get your steriods!!!! i think your right about asking about st tomas i also been thinking about asking to be reffered to pain clinic see if that helps xxx
much love to you my dear friend hope steriod quickly kick in for ya babe xxxxxx

Angel Oliver
07-16-2009, 04:04 PM
Oh my Gowd Jane....did you see my Doctor :) I know it aint funny ,but oh my what an obnoxious unhelpful doctor you saw.You experienced what i get most times.Im so sorry you went through this you so needed help today.Deffinately see your gp n change doctors/rheumi immediately. Im so angry they didnt help you but made matters worse.Toss** they are.
Just breath and think....'things happen for a reason you can not yet see'' maybe there is a fab doctor arund the corner who will help n support you better in the future. Each time things like this happen to me...along comes help in some form or other...so hang in there.We understand you!

Love n hugs n 2 fingers up to the god complex doctor who will get hemeroids!!

07-16-2009, 04:15 PM
huggss xx

07-16-2009, 04:40 PM
Awh Jane,
Sorry to hear about your experience. Great job sticking up for what you knew was right for you and your body. I am not sure I would have the guts to speak up to a doctor. Maybe you can come with me to my appointment?!?!

07-16-2009, 05:29 PM
Also i forgot to mention,

This morning when i was waiting for my lift to go there, i saw a purple butterfly outside my window...ive never seen one in the wild before let alone in England!

Its made me realise that maybe some spirit/angels/guides were looking over me and knew i had alot riding on this appointment, i know they know im in peices about it all, so it was reasurring when i saw it.

I hope to see it again....maybe on the day the lupus goes into remission?

Thanx for your input guys


Angel Oliver
07-16-2009, 05:29 PM
You know what Mlockwood, i said the same when i first joined.Even though i still have some bad appointments,slowly im learning to be stronger and sometimes do stand up to them,not often,but i am learning.You keep coming here...we'll give you the strength n one day you will do what i did...and you'll feel s happy they didnt take advantage of you.Its so intimidating i know...but one day,you'll look back at this post n smile.

Sorry Jane:hijacked:xxxxxxxx

07-16-2009, 05:42 PM
And the buterfly?


07-16-2009, 05:58 PM
Jane -
I'm so glad you stood up to your doctor today. Good for you!

Personally, butterflies are really important to me and my family. They symbolize those who are no longer with us on this earth. Our family showing themselves in physical form that they are still with us and looking over us and protecting us as best they can. To me, the fact that you saw a purple butterfly is your loved one stopping by to support you and recognizing in physical form that your struggles are with Lupus. I think it's awesome you saw the butterfly today, especially since it is rare where you are. I feel like I always see butterflies (sometimes just in pictures and not real) whenever I am in need of loving support.

Now I'm about to head to the arcade and check out your stats to see what game you are speaking to Oluwa about in code.


07-16-2009, 09:59 PM
I am so sorry to hear what you went through with that idiot of a doctor, but GOOD FOR YOU for standing up for yourself and making him listen to you!!!! Maybe if enough of us do that, if we follow the example you, Angel and Rob (and I'm sure others) set, the doctors will start to pay attention and treat every patient with the respect we deserve. So give yourself a gentle pat on the back for showing your strength today, you deserve it!!!

I agree completely, Sandy R. Butterflies have been very meaningful to me and my family ever since my grandmother died in 2002. Every time I see a butterfly, I know it's her watching over me and reminding me that she's still here, just in a different form. I associate yellow butterflies mostly with her, but any butterflies make me smile and give me a sense of peace no matter what I'm going through. I think too that the fact your butterfly was purple means your loved ones know what a hard time you're having with lupus right now, and this is a way of letting you know that it will be okay, that they are watching over you.

Soft hugs to you...

07-17-2009, 05:16 AM
You know what....your right! they are a bunch of CRANKS!!

Thanx you 2 for your butterfly input i think of my Gran who i lost when i was 14 wow i dint realise it was tht long ago, anyway flutterbies remind me of her, she loved them, i even have her mirror still, in my bedroom and at the bottom it has a butterfly,

Im quite spiritual so im all in favour for close ones we have lost being by our side in times like this, and come out in the form of butterflies, i watched this show once i think is was called "its a miracle with Roma Downey?" not sure on the name so sorry if i got it wrong, anyway it was lovely about a boy who died and buterflies awww....brings back a tear.


07-17-2009, 08:26 AM

Sounds like your doctor needs to be put in his place. He is not very nice. It doesnt sound like he listens to you and thats not good. Your doctor should never make you cry. I hope you feel better honey, let me know if he gets out of line again..... Ill turn into kungfu panda on him!!! Ha Ya!!!!


07-17-2009, 10:25 AM
haha kung foo panda love it!!

I would of had a bigger issue if it was my proper consultant, instead i get seen by his side kick...this happened to me a while ago also, yet sill sidekick still has to go into see dr ahmed to consult with him.....whats that all about? i have alot of respect for dr ahmed not the one who yawns at me....i felt like shoving a bunch of cotton blobs in his gob...how rude!

Anyway im planning on having a good laugh tonight no one is gonna stop me.......bring on th hangover!!!



07-17-2009, 12:52 PM
Brandichi & ISDM - funny that the reminder is your grandmother because when my grandma died is when I learned of that theory and they have always reminded me of her too. To me, she shows up as a monarch. As other loved ones have crossed over, they have been represented by different types/colors of butterflies.

07-25-2009, 01:26 PM
i know what you mean by not feeling listened too....i remember when he first started and he used to listen alot and in great detail, and now he doesnt so much and i do feel like he disregards alot of what we say....maybe its a stage he is going though as i think he has it in him to be a good doctor, because i have had postive experiences with him in the past -and i have felt understood and listened to by him, all but recently ...maybe they are overworking him. when i went in with the tummy he was in at a & e , so if hes doing clinic and a & e maybe the hospital have overloaded him....not that it helps us of course - but if they are working him too much i guess he would not have the energy to fully enage with us....

im not sure what the anwser is, i do like him though and i want to give him a chance, as before he has been really good with me and understanding, maybe we caught him on on off week as i saw him on the same week and he didnt seem his normal self....i have devolped this feeling of electric and numbness in my hands and arms and i told him, but he didnt say anything about it, and im not sure he took notice of it, which was abit frustating as my hands are important to me and what with all the issues i already have with them, i dont want them to get worse! i have also got this werid pain going up my back alot now, feels like someone has beaten me across it with a bat and a liquid running down my spine feeling, but i didnt say anything as i felt abit shy after saying about my hands and i thought he would have thought i was putting it on. i still dont know why i shake alot, they though it was the steriod, but the shaking gets better when im on steriod, and im happy that my g.p has noted it and realised it that the steriod get rid of it and not cause it...id like to know whats causing it really but with the shaking the rhemy says hes not concerned for it, so i guess i shouldnt be concerned but it is a pain in the butt and causing more walking issues than the joints do, but i guess im on alot of meds so its just one of thoses things i guess....

im not as brave as you and i dont push , i still get very nervous seeing them and i rarely fully say how ive been as i always worried im making a fuss ....the doctor we are discussing asks me alot about work too....i tell im the steps i take to get back on track, and i think the fact i voluteer lots when i can to build me up for work speaks volumes, i just cant do it enough to return yet, as much id i love to, as im very career minded as you are and i hate being on benefits but i go down with a bad flare every few months its seems, have mini flares often so even voluteering is an issue now as i let them down and dont come in more than i do, so thats why im teaching myself photography to hopefully start my own home business so i can control when i work and when i dont and hopefully when im next asked that will safisty him, as im not lazy and wanting to be off....its just turned out that way....i know how u feel about it mate, its hard and scary when you dont feel like anyone is taking notice of you and when things dont get explained and i had the same as you - my joints were really hurting and the doc we are discussing said they were fine, but they were hurting and i kinda of would like it if it was explained why they were hurting and stiff and stuff if they were fine...we have all had years of being disbelieved by med peeps before our conditons progressed to the point where someone had to take notice and its hard for us to go though it again with someone new.

i think deep down he does care and is concerned, i think maybe he just needs to get better at commuciaitng with us and maybe the hospital should just let him work at the clinic and not put him in a & e as well and maybe they are pushing him to hard which is impacting our experiences with him. i know our rhemy thinks alot of him, and i trust our rhemy so if he believes in him, i want to as well, but i know how u feel, i felt the same way and its a difficult place to be in. im not sure what the answer is, maybe we should all pray for the new doctor that he will be the best he can , that he is not overworked and that we can all work together with each other and that these barriers we are facing will disappear!

my nan used to love butterflies, they remind me of her, i think your butterfly was sent by God to comfort you and cheer you up....Hes lovely like that is God xxx