*Warning: Extremely long and boring update*
Haven't blogged for a while as I've been feeling quite down and despondent about everything. However Tilda has inspired me to write an update
Basically I'm still no further along with getting a diagnosis. I did get to see the 'proper' consultant at the beginning of April. He seemed very positive and 'gung ho' and I thought maybe, just maybe, he will finally get the wheels turning and make a decision as to exactly what type of inflammatory arthritis I have. (Despite the fact I have RA symptoms, my Father had it, his sister had it and a surviving brother has it) because my RA Factor is always negative I'm still waiting.
Just to recap at Christmas I saw a locum who decided I should have ultra sound scans done on hands and feet, however by the time my next appointment came up at the beginning of April the scan had still not been done and my GP had been told that the scan requested is not available here on the Isle of Man. The Rheumy said the scan could be done it's just they don't have anyone trained here to carry it out. (I'm very confused now I've had other ultrasound scans done here so not sure what he means by that) Anyway he said he would arrange that and possibly an MRI with dye injected into the bloodstream. He told me he would get straight onto that and that he would see me again in a couple of weeks.
After 3 weeks I tried ringing Rheumatology for an update, as usual my call was answered by a recorded voice telling me to ring outpatients appointments if I was ringing about an appointment, a different number for Private Patients and then a rather curt message about not being an emergency service and if you're worried to go see your GP or A&E. I left my name and number anyway with a little message. Nothing.
After a couple of days I decided to ring Outpatients Appointments to see if they could tell me when I might next be seeing the Rheumy or when my scan was scheduled for. (Just for good measure I did ring Rheumatology first but got the answer phone again.) The lady I spoke to at Outpatients was lovely, though she was quite puzzled as she could see I had had an appointment on 3rd April but they had not received any 'Outcome Notes' which they then use to allocate a new appointment. So she rang Rheumatology herself and managed to get through but they wouldn't speak to me direct. The message I got back was the Rheumy has my notes and he's away right now, until he returns wth your notes we have no idea what his plans are for you. Please call again on Monday 29th April, when he returns. Ok.....
So I wait a few more days and duly ring back on the 29th, now I knew there was a Rheumatology conference in the UK the week before so was I was thinking maybe the Rheumy had been there and taken my notes along as a case study. No I don't know why but I'm just clutching at any old straw these days. Again I get the impersonal answerphone so I leave yet another message explaining who I was and how I was advised to call back on that date. Still nothing.
So I took to ringing everyday, Rheumatology first, answerphone, call Outpatients. After a few days I got to the speak to the helpful lady from Outpatients again. She remembered my name and said 'Have they still not got back to you?'. No says I. She checked on the system again, still no 'Outcome Notes' received and still no Rheumatology appointments or scan appointments. She tried Rheumatology herself. She got the answerphone herself this time. She decided to try a different tack and told me that whilst Radiology (who do the scans) haven't an appointment scheduled for me they might have some pending notes so she would try them next. She put me on hold and after about ten minutes I was debating whether I'd been forgotten and should put the phone down when she came back on the line apologising for keeping me waiting. 'Scans were requested in December' she said. I told her I knew that but they never happened and I had been told they couldn't be done here. She then told me that some notes had been added to the scan request stating that a meeting would be held this week (no date) between Rheumatology and Radiology regarding my scan. It's a specialist scan with a name that unfortunately she couldn't remember (helpful) but that someone in Radiology promised to ring me after the meeting to advise me of the outcome..I am not holding my breath...
Meanwhile after being on sick leave for over 6 months now my employer has ceased paying me sick pay and the insurers they use to pay 60% of wages from 6 months onward have not approved my claim yet as my GP has not provided them with an updated medical assessment. I rang my GP surgery to be told the request was with the doctor but she was very busy and only in part time. So at the end of this month I may not even get 60% of my wages. I might just get a big fat zero. I rang my mortgage company to explain the situation and ask for help.
'But you're not in arrears' they told me.
'I know, I wish to avoid getting into arrears' I said.
'We cannot arrange a payment plan until you go into arrears'
'Well can I take a payment holiday or switch to interest only for a time?'
'No sorry you have the wrong type of mortgage for that, if you wish to switch we will require 6 months payments as penalty for breaking the Fixed Rate Mortgage then there will be set up fees for the new mortgage'.
I am so depressed, demoralised, and demotivated it's not true, everywhere I turn I hit a brick wall.
Apologies for the l-o-n-g, l-o-n-g whinge. Hope I haven't spoiled anyone's day.
JoJo, Isle of Man xx