Back on the meths - Do it yourself style

I saw a locum consultant last week, my brilliant Arthritis one having returned to the country of his birth and a research post. Damn, I knew he was good. Seven months after my last appointment I had my 'early' review, with a stand in doctor at a different hospital 40 miles from home. Such a nice man I had been told, a real gentleman. Well he did stand up when I entered the room and he shook my hand but.... what a load of old cobblers.

He announced he was a retired consultant from Scotland, helping out, before asking me why I was there. I haven't had time to read your notes much. He certainly hadn't read the 5 page later the last chap wrote and had copied to me with his 'plan of action' regarding tests and treatment.

It's not worth the bother of relating much about this poor consultation for consultation read diatribe for the doctor about why I should lose weight. He gave me a cursory examination, apparently could find no evidence of psoriasis or indeed anything much and suggested he do a raft of the same tests the previous chap had ordered in December, just to check. Carry on taking the tablets. I asked about my skin problems, "I can't see any," he said from 6 feet away, "we'd have to refer you to a skin person,"

"For Psoriasis? That's why I am here, "

"Well I don't do skin."

I glumly asked him how long before I could get any treatment, "Well we could put you on a trial but I don't think it's worth it."

Not worth it when I have been like this for 9 months and am getting worse by the week. I burst into tears and sat back. Something about his God like manner and the demeaning way in which he spoke to me made me give up in an instant. I just wanted to be out of that room and I was angry that after being told last year and even having had it confirmed in writing that in the opinion of the last consultant no-one was looking at the whole picture and from the evidence he had found in my notes I had had psoriasis ignored since 1966 no less, yet again I was going away demoralised and with no hope of relief.

Thankfully I had taken WH with me. Usually I go to ALL his appointments, he rarely attends mine. WH began to get annoyed and questioned why I needed to go through the whole lot again after the last round when a treatment had been proposed but no one had wanted to prescribe it after the previous bloke left. "I am not he, was the reply I need to do these things for myself." WH asked him if he would be here in a month's time to review the results then. Er..... NO. He was only a stand in. WH told him the effect of the PA on me (and him) said I could lose weight if I could actually move a bit after all I had lost 40 pounds on my Lyme treatment. The eyebrows raised and he visibly shifted in his seat. I know that disbelieving look. WH told him every time I did lose weight I was put back on medication whose chief side effect is weight gain. I was fighting a losing battle. Why could I not start the original proposed treatment for a trial period and see if it helped. Eventually the chap agreed, I think mainly to get rid of an increasingly irate WH and a tearful me. Then he couldn't get us out of the room fast enough albeit clutching a note to the GP to prescribe and a note for a blood test.

I duly started methotrexate again on Saturday. I was not given the treatment card I had to carry last time and there was no mention of the weekly or fortnightly blood test I was supposed to be getting to monitor my liver. I made an appointment for myself and another to see my GP, the earliest of which was 20th July. Today I realise that the instructions on the bottle of pills are different from what he had written on the GP note and had told me verbally. I will have to check with the pharmacy (whilst I also checked the dose of WH's meds which he suddenly discovered is double the usual strength, but that's a whole other story.)

I had a follow up appointment in the post on Saturday; this time another new doctor but at the same distant hospital in 3 months time. That looks like a good start anyway. Yesterday I felt a burning sensation on my scalp which was driving me nuts. I asked WH to investigate, after all you can't see the top of your own head. 2 seconds later he announced massive psoriasis spots all over. Funny that, 3 days before there was no sign whatsoever when the locum looked. He did shake my hand again when I left, what a gentleman.

Back to reality

Our holiday seems a lifetime away, almost 3 weeks since we returned now. This last weekend we were away in Southampton and visited the Hillier Gardens at Romsey. So many trees and so little energy to walk round them all. I did get a few photos of some of the stranger ones though.

Tomorrow I see my new (yet again) consultant. The lovely chap I saw in December has apparently left and I'm seeing a locum once again. I just hope he decides to go with the other chaps plan of action or else I'll be having another boat load of tests again. I just want to start some proper treatment, after all I've been waiting 7 months over which time I have put on weight after the steroid trial, have begun to seize up and and now can't walk very well. Additionally the excruciating skin itch is back with a vengeance. What started as a minor irritation when I was bitten on holiday has developed into a large red, raised patch on my arm which itches intensely. It wakes me up it's so bad. Surely a sign of galloping psoriasis if ever I saw one. Fingers crossed that matey tomorrow agrees and finally does something about it. Nothing I have tried works at all. I can't believe that last year I was so well (and so thin - for me anyway) and now I am almost back to square one, just the Lyme symptoms are still thankfully absent.

The last few weeks I have done what I can to help with Mother in Law, saw the death of a very old friend whom I shall miss intensely and provided bacon sandwiches and tea on tap to the other friend who is helping WH to build our porch. At least at home normality rules, it still looks like a building site!

New Year's Eve

started bright and early here. I didn't get the long lie-in I was after. Two reasons: 1) I woke myself coughing and couldn't stop and 2) I have 24 people coming for eats/drinks/whatever tonight and I now have to go get an MRI scan at noon.

Went for the MRI on Monday evening as previously directed only to find the scanner was BROKEN. I was told I'd wait at least another 3 weeks for a new appointment, but Lo and Behold yesterday they call and say go today. At least I get to finally start the PA (psoriatic arthritis) treatment after this.

My New Year's Eve 'At Home', (don't call it a party as WH hates parties) should be renamed 'gathering for those recovering from the bug' as every single person has had it and the phone lines have been hot with people checking that if they come they wouldn't infect anyone. Never have people been so courteous but given the nature of the disgusting germ round here, you wouldn't wish it on your own worst enemy.

So tonight we party and celebrate the back of a year that has been fairly rubbish and not much improvement on the previous one and that not only had a couple of bereavements but a murder trial as well. Hopefully 2009 will be much improved. As of this week the kitchen is all but finished, the driveway and front is too and that only leaves 2 bathrooms, the utility, cloakroom and a back garden to plan. Sounds quite a list but believe you me it's small beer compared with what WH has achieved in the rest of the house.

I'm really looking forward to 2009, it's almost 2 years since I first set foot in this house and I'd really like to be able to relax and enjoy it. I'd like WH to be able to too and rid himself of this awful depression, which I am assured has very little to do with the house but even so it would be a big relief.

So cheers here's to 2009 and a Happy NEW Year.