Cuddles day

If it's Monday it must be cuddles day, not for me, for one of my grey babies, Misty, the smaller of my twin cats. 

Sunday nights I take a weekly dose of Methotrexate along with whatever food I fancy will keep the dreaded nausea at bay. Even if I have just eaten, I must eat again 'on top' of the pills in order to keep them down and to allow me to take the other seven I take each night. Taking before or even with a meal is usually too early in the evening and I get the side effects before I'm asleep. So years of trying other times/combinations have lead to this current practice. The usual snack of choice is biscuit based, gingery or maybe cheesey. Occasionally actual cheese does it, but anything 'sensible', fruity, veggy, or runny is a no no. It has to be dryish, bland and filling. The food police are having a fit just reading this.

There then follows a shortish night of frequent trips to the bathroom, night sweats, thirst, headaches and general feverishness. By the time I have started to sleep properly, around 5.45am, the alarm goes off and WH has to get ready for work.  I try to go back to sleep and frequently fail. I have to take more pills at 6am anyway and Mondays I have the added bonus of a Folic Acid pill too. I have to eat again then, usually breakfast but for those times I really can't eat anything 'proper' it's more biscuits. I tried and failed to get those pills down unaccompanied too but the ensuing nausea was worse than ever.  An hour after that lot and by the time I've dressed, tidied, emptied the dishwasher and pandered to the cats, I'm knackered and ready for bed again.  

This all conspires to make Mondays a waste of time for me. Not so for the smaller of my twin grey cats. He's normally a pain in the bedroom at night, taps me when he's hungry, has a major wash next to my head when I'm fast asleep and has a thing about doors, an open door must be shut, a shut door is only there to be opened. On Mondays however it's as if he knows. As soon as I go near the bed he's there on the corner, getting ready to snuggle in. When I pull up the duvet he shifts into position against my leg and there he stays, good as gold. I get the occasional glance to see if I'm likely to move but for as long as I'm there, he's there. No tapping, no washing, just extremely good behaviour. Of course I might reach down and give him a quick cuddle but he doesn't expect over much and certainly doesn't pester me for more. In fact, the perfectly behaved cat. His brother Nelson, meanwhile is usually outside if the weather's good, if it's not he'll be in his cardboard box in the living room (but that's a whole other story).

My question is simple. If Misty can behave for a few hours each Monday then why on earth can't he do it the for rest of the flipping week?

The colour purple

Christmas is a-coming. I know it's almost 2 months away but everything seems to be in the shops already. For once I've got my act together and got some stuff in hand but the one present that's concerning me today is my own.

I just saw this shoulder bag on a new Accessory boutique, Pretty and Witty, and I love it, me who normally spends £15 in Asda or Tescos top whack. Maybe it's something to do with the colour, maybe it's the style - I just can't do regular 'hand' bags with my arthritis - or maybe it's because it's not *that* far from my usual price range but I have to have it. I'm telling WH it has to go in my stocking this year.

Not that I don't just love all those other much more expensive ones but being sort of out of the market as it were with my rubbish hands I could never buy one as WH would be carrying it everywhere for me and moaning about the privilege. My 'hold' time for anything is 5 minutes max and that's no exaggeration. But a girl can dream. I defy anyone to not love some of them. For now I settled with a beautiful Saddler purse from the same boutique a couple of weeks ago, and you guessed it, mine is purple and soooo soft, it will look great in that handbag on Christmas morning.

WH you have been well and truly warned.

Yet another diagnosis

I thought being diagnosed with Psoriatic arthritis in December and being told I'd had it since at least 1993, if not before, was bad enough. Yesterday I get a call from my GP who tells me all the scans etc I had over New Year have shown I have Osteoporosis in my spine - severe. In the interest of public decency I can't really put here what I said to her in reply.

So now I am left thinking why on earth did they not find this before. It's not as if I haven't been to the doctors recently; I have averaged 2 visits a week to my local surgery for one thing or another over the last 4 years. A lot of those things are bone/back/foot/ hand related. They have found out that I have 'multiple fractures of both feet on different occasions'. So is this why my feet hurt then. I did tell them often enough. It's not this recent GP, I haven't really said much to her about it, rather the previous couple, they ignored it so much I just gave up. Thought it was old age creeping on.

Now I'm down for more tests, xrays of my spine, bloods etc etc ad nauseum. I decided that I've got to get fit and I really need to do some load bearing exercise to strengthen my bones. Quite how I can, when at the moment every bone in my body is screaming in agony, my back won't seem to hold me upright a lot of the time, never mind the pain in my feet which has been steadily gaining in strength since Christmas I'm not really sure at this juncture.

I've also discovered that I am now 6 times more likely to break bones from minor injuries, this is obviously why I keep breaking ribs, (Neelu your words were prophetic) so I have to be a bit circumspect in what I do. No more offering to help with moving bricks and stuff with WH, I'm so clumsy I usually end up doing some damage anyway. I have a gung-ho approach to things like that anyway, if I can physically manage something at the time I'll do it, never mind the usual payback after the event. It helps me feel normal i.e. not sick - don't you know.

Yesterday I started the chewable calcium tablets 'especially suitable for the elderly' and have yet to take the once weekly thing where I need to keep upright for 2 hours afterwards and during which time I can't eat anything or take any other meds. OK, I know thousands if not millions of other people do all this and have the same diagnosis but surely not at my age, not really, honestly. Of all the crap health-wise I have had to put up with over the years, this seems to have affected me the most mentally. Trying to be rational I tell myself that it's not life threatening, millions are worse off than me and facing life limiting illness and far worse handicaps every day. I accept all that really I do. I just have one overwhelming feeling that I have never, ever had before. Suddenly, I feel old.

The NHS lets me down again

Two weeks ago I saw a new Rheumatologist, new to me but not new 'in post'. WH had seen this chap once and we were both impressed with his approach, study ALL the notes, ask endless, seemingly unrelated, questions, quick-fire fashion all whilst his brain was processing the information at lightening speed. As it happened, he didn't think WH's problem fit his diagnostic criteria and recent events have confirmed that. I was thus prepared to be dazzled with the speed of a clever doctor's mind working overtime for me and overwhelmed by having to answer and hundred questions at once. I was also apprehensive that he would, like his colleagues dismiss me as another, over worrying 50-something.

Disarmingly he greeted me with a smile and with the words that he had studied my entire medical history and had noticed a large number of random ailments which he thought just might be connected. He said I had previously seen all the Rheumatologists in the district and now maybe I should get some answers. He proceeded to outline my collection of symptoms, starting at age 12 and a problem with my wrist, through sacro-iliac problems following being hit with a hockey ball the following year until he reached recent matters with my hands and feet, via skin rashes, allergies and the myriad investigations of the typical heart-sink patient. He then examined me and again surprised me by seemingly ignoring my hands other than a cursory glance and paying far more attention to my arm (long standing rash) and my feet which he poked and prodded and caused more pain then I have ever had in them and that's saying something. He asked me about cortisone I had had in my hands, shoulders and feet and got me generally confused and reduced to a gibbering wreck as I tried to answer him succinctly and quickly. After all, who can remember the precise date they had an injection in the sole of the foot, the pain, yes, but the month, possibly, the year probably. And so it went on. He told me to get dressed and then shouted from the other room to ask if I had ever had anything wrong with my scalp. I had, I have right now. He rushed back in and stroked all over my head, with a gentle version of an Indian head massage. 'Very extensive' was his only comment.

Returning to the office fully dressed, he appeared to be surfing the internet. I sat and waited. Finally he asked me about my family if anyone had arthritis - all except my mother, or psoriasis - my sister, my cousin. He then delivered his verdict. I have probably had psoriasis most of my life and now have full blown Psoriatic Arthritis. He described in detail symptoms I had which no doctor has ever made much of, the rash I can feel but is invisible, the joints which feel like they will burst, the itch I have had for upwards of 10 years but which will not go away, the sores I had on my head and which lead to long term bullying at school. My miraculous recovery last year was due to 2 things, the eradication of the Lyme bug from my system and the fact that the Lyme treatment is an old fashioned treatment for arthritis. A classic case of killing two birds with one stone, or in this case two illnesses with the same treatment. Which is why the arthritis and psoriasis have returned to fight another day but the Lyme symptoms have not. My previous diagnosis of Rheumatoid Arthritis was similar but he felt only part of the picture.

He wrote me 3 prescriptions there and then and I had 4 x-rays, some blood taken and have to have a full bone scan and a MRI of my hands. 'About the only two tests you don't appear to have had already,' he joked. After the scans I can take some of the heavy duty stuff he has prescribed but for now I have pain killers which work (makes a change) and some weird cream made from chili peppers which magic the pain away in minutes. I have to be careful where I put that stuff though!

He smiled, was gentle and caring. I liked him, I trusted him, even more so when he said he has relatives with the same complaint. His aim is for me to be pain free in the long term and significantly better in a couple of months. After all he said you've seen enough people who had missed it, it's about time I had some treatment.

So once again I have been failed by the NHS and their cost cutting, time saving piece meal approach to patient care. When someone took the trouble to view me holistically and look at all the information instead of a tiny part the answer was staring him in the face and probably had been for 40 years.