so the story continues.............. the next instalement................
I woke at 9am with mum all ready to ring the consultant to tell them that my hardness has gone down and that it must of been a reaction to the enbrel.
the secretary is off on tuesdays so you get some stupid typist who cant use the phone saying unfortunatly Dr Medley is in clinic can i take a message : Yes you can take a message Dr Medley told me to call her please can she return my call.
4 more times i called today. I am in pain, i am in anger, i am going bloddy crazy after 4 months stuck like this. All she has to do is return my call.
4.50pm I called again finally somebody transfered my mum through. she agreed that the hardness must be due to the enbrel and wil contact the drugs company to tell them of this side effect. Blow that! i dont care about that what are you going to do to help me????
My mum tried effortlessly to get the dr to give her some direction in which way my treatment goes now etc........... All the dr had to say was she will get her secretary to book me an appointment when she returns tomorrow.
Anybody know that song "tomorrow, tomorrow, I love ya tomorrow your only a day a way"???? 4 Months 4 Bloody Months anybody know that song???? i think not hahhaahah
My Dr could give me no timeframe etc all i have to do is wait for this appointment.
Im not sure what i expected but i expected something.
Ive spent all day asleep inbetween calls because i am so depressed i cant face being awake.
For her its just another appointment, for me its the differenece of walking again in 2011 or not.
Sorry about my rant but i just cant be stuck in the house anymore. I want to be out and about.
Oh God Marnie, I can feel your frustration! Its so bloody unfair!
The only thing I can suggest is you write all this down, and read it back to the Consultant when you get to see him/ her.
I know it sounds like a cliche but this will pass Marnie and you will be well again, it just takes time and enbrel is obviously not the one for you, why don't you maybe try Humira next?.
Try not to get too stressed as this will make the pain worse, easy to say not so easy .
Anyway, I hope you get some help soon, glad your mum is there with you.
Sorry again just re read your blog and see your mum did talk to Consultant. I too am calendar watching for appointments, 29/11 back for surgery on ankle check up!
Hi Marnie, no Doctors are not God although they like to think they are!
Often receptionists protect them from patients which is totally wrong.
You need to write a letter to the consultant setting out exactly what happened today and making a formal complaint about the way you have been treated (or not) over the last 4 months.
Also send a copy to the Chief Executive of the Hospital concerned - he might as well earn his vast salary that we pay for as well.
Loved the picture - is that your little one? She looks a pickle.
Hope you will get some relief soon. Love LavendarLady x
There not so great in my area either.. ,I once saw a a consultant privately it was £150 because It was 4 months to see one on the Nhs!, my friend just went to my counties sister hosp as waiting times still long at mine and other 1 month later is still waiting for her blood test results??> her Gp referred her but symptons not typical of RA?, But may be another auto immune condition? but she still has heard nothing! x
thats soooooo frustrating!!!! yep, nice to see a pict of you, your very pretty
sorry I'm not much help but just want to show some support, take care xx
I'm sorry this is happening to you - you're much to young for this.All i can say is i echo all the above comments .I can only tell you that i am thinking of you often and hope that you can get it all sorted quickly -it really is the worst pain .I am lucky my consultant is fab but i know a lot of folks have problems.Ring the helpline -see if they have any advice they really know their stuff.
Lots of love
Julie xxx
P.S think blue hair would look fantastic -don't forget to show us a picture !
Hi Marnie, sorry your having such a bad time, life sucks for us during bad flare up's. My answer has been to dope up so much I'm pretty much turned into a zombie for a couple of weeks and sleep most of the time (though at times I have felt like I'm not going to wake up).
Have you tried talking to your GP, if I'm going through a particularly bad time and the appointment the nice secretary's sent me is weeks away, I ask my GP to contact them to try speed things up a bit which usually works.
Hope you get some help soon.
Beth x
Good morning Marnie!
I'm not familiar at all with you medical system there, but if you have an Emergency Room at your hospital, might the Dr. there handle your situation and atleast give you some relief?
Wishing you a better, or atleast not-so-bad day today Loret
Does any1 else have a consultant rheumatologist who believes that her patient (- me) is not severely disabled by juvenile sero-negative poly R.A. - even tho said patient has suffered for 25yrs & now it appears I have early onset Osteoarthritis as well! Unfortunately,as I only wear a size 3 shoe - I doubt she'll ever walk a mile in my shoes!!!
Marnie,I'm glad that I've found sum1 else who lifts their mood by dyeing their hair bright colours,mine's a mix of shocking blue & ultraviolate at the mo - although they're getting re-done on sat - I'm v lucky as my bessie mate is a hairdresser.But what really makes it worth while are the looks u get from young girls & older women.
Poor you Marnie i could cheerfully shake this blasted consultant on your behalf. How can she just leave you in this state it's all wrong. I think you should go back to your GP and sob and tell them how you feel. I thought the younger patients would take priority? They do here - it's the slowly declining ones like me that they leave on hold I've gathered. But I think that's fair enough if they have a very finite rheumatology service - it should be young ones like you they bend over backwards for because you're too young to have all this to cope with.
If it is any consolation the situation re hospitals and consultants is dire here too where I live and you can only see the consultant once or twice in person. After that the whole thing is done on a video conferencing thing or you just have to go to GP or Physio. So my next consultation is 2 weeks tomorrow and the pressure is really on because if he says "inconclusie - see you again in April (or on a video screen) I think I might end up shouting or worse..?! You got it so right when you said for them it's just one more patient - 30 mins in a busy day - for us it's our whole life. If they had it they would have to give up their jobs because you couldn't be a rheumy with RA very easily so they should be mindful of this I feel. Take care - hope things lift for you very soon indeed. TT xxx
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