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Sleep, Precious Sleep…

I have had some sleep and PROPER sleep – not tranquiliser induced (no temazepam since Tuesday)! Last night I actually slept from 1am-6am without even going to the loo – FIVE whole lovely hours.  The night before I slept too… I’m thinking the steroid taper is helping – now I’m on 12.5mg it’s not having such a powerful insomnia effect.

Life is so much better with sleep.  Yesterday I saw some friends for the first time in months, I put on some make-up, I put on a dress and I felt human!  They both said how well I looked, and actually (if you forget about the medication) I’m living a healthier lifestyle than I ever have – I’m not smoking, not drinking, eating lots of fruit, cut out chocolate and crisps (apart from at the weekend when I treat myself), so maybe I do actually look better than I have for a while.

I am noticing some changes this week.  The aches and pains and twitches I had been living with (and got used to for so long) have returned.  I hadn’t really realised they had gone until now when they are coming back.  This makes me realise 3 things 1) That I have obviously been living with this chronic illness for a while 2) That the aches and pains have bad a cause 3) That the steroids have actually been doing something.

Now I’ve had a chance to think about my ‘whole body’ it has made me realise that the rheumatologist appointment that I was due to have in September/October has never materialised.  I remember after my last one the reception was closed and the nurse took the booking form, I think this booking form never made it to the booking desk. This causes me anxiety – I need to see the Professor to get my MRI results and discuss the general plan of action.  I have noticed this happening a few times when my appointments have lasted longer than the reception desk is open for, the next appointments don’t get booked – this is a problem with the system and it’s very frustrating. I will have to do some chasing on Monday 😦

Anyhow, let’s see if I can go and make the most of today seeing as I have some sleep banked up for it!

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Everything’s Topsy Turvy

Things are a struggle right now, I can’t even pretend to be positive at the moment, life is hard (and then I feel guilty for saying that as my life is easy compared to some).  I’ve been on the Mycophenalate (Cellcept) for 10 days now and I’ve not had any problems with it as far as I can tell, but I think the tapering of the prednisone is taking its toll.

I’m pretty despondent after my latest eye appointment on Tuesday; I had convinced myself my eyesight was improving and I got all the way to the bottom of the chart (which I couldn’t do last time) but when the consultant examined my eyes and I excitedly asked him if they’d improved he replied “They haven’t deteriorated”.  I should be happpy about this, he already told me they wouldn’t improve, but I guess I had some false hope.  His “You haven’t got that much of a moon face” comment also peed me off as I didn’t think I had a moon face at all….

I had 3 things I wanted to clear up at the consultant appointment:

1) Could I have the weekly blood tests for cellcept at my docs surgery to save me trekking into the RVI every week where I can never get parked and am never there less than 3 hours.
2) When will he allow me ONE glass of wine on a Friday night.
3) How long will I be on the mycophenalate/cellcept? (hoping for an answer of months as the risks scare me).

I did not get the answers I wanted to hear:

1) NO! We need to see you at the RVI because we are changing your levels around and until they are stabilised (likely to take a few months) we need you here every week. Bugger.
2) NO WINE! Until the levels are stabilised (likely to take a few months). Bugger.
3) At least a year, possibly longer term – it will take months to stabilise initially. Bugger.

I was at the RVI for 4 hours, my husband had to leave mid appointment to get my daughter as her after school club was due to close and then come back with her to get me. I left the house at 2pm, I got home at 7.30pm, it took it out of me.  Have to go back on Monday and do it all again… and then the next week, and then the next week, and then…

Yesterday the nurse from my GP surgery rang me about my trip to Marrakech and told me I was going to need Hepatitis A vaccination and also about the risks I need to weigh up travelling to the region whilst immunosuppressed.  I have to say I have been getting a bit anxious about this anyway with travel insurance problems as well as the health issues, but the trip has been paid for and my family were excited to go (as was I – we booked it in February and were due to go next month). Anyway, my husband and I decided last night to cancel the trip, I just don’t think it’s worth the risk travelling to a country where the tap water is dodgy with my current poor health.  This is a blow emotionally and financially. I love to travel, LOVE,  I used to work in travel and I don’t feel like I’ve had a holiday unless I’ve been on a plane somewhere, but we have paid to reschedule the flights to Barcelona in May – never been there and at least it’s in the EU so better for me insurance and medical-care wise.  For next month we’ve booked a break away in Scotland at a family spa hotel so we are going somewhere.  I think travel will be an issue going forward, my dad lives in the states and I’m not sure I’ll ever get travel insurance to cover me going there…

Yesterday my steroids were tapered down fom 15mg to 12.5mg and Cellcept up to 750mg twice a day from 500. I wouldn’t have thought a 2.5mg taper would affect me, but I feel like HELL today. I had 3 hours sleep last night, what’s all that about I was on 80mg prednisone a few weeks ago, I thought things were meant to improve?  My body aches like it hasn’t for weeks, my head is pounding and my emotions are more heightened than normal. Is that the taper or is it just everything taking its toll?   I guess feeling low doesn’t help with the physical symptoms either…  My husband reckons that because my medication levels (and types) are changing weekly I never get a chance to settle and get used to one drug regime, he’s probably right – everything’s topsy turvy.

I hope I sleep tonight, I’m saving my temazepam for a Friday night sleep treat!

Back to school.

My husband is a teacher and my daughter is 5 so school plays a pretty big part in our lives.  The summer holidays have been a bit weird this year with me not being too well and umpteen hospital appointments and I greet the new school year with mixed emotions.  I am a lover of routine so I’m pleased that we can all get back into one, but I’m also anxious about time on my own without my family around.

My anxiety is being a bugger this week, I wish it would just leave me alone, I’ve got enough to deal with without this unhelpful condition.  I started the mycophenolate yesterday and, so far, so good no side effects but the long term implications of being on such medication (the cancer risk specifically) is scaring the hell out of me and I’m having all these thoughts that I’d be better off risking my eyes than increasing my risk of lymphoma.  I also reduce the prednisone down to 15mg yesterday and I do find when I taper down that it leaves me feeling a bit on edge for a couple of days.

Also, annoyingly over the past 2 days I’ve had a savage appetite – having been on high doses of steroids for about a month without any appetite change, why is it now I’m on a low dose that I’m RAVENOUS.  I’m eating so much fruit, nuts, dried mango and salad (and couldn’t resist a yorkie bar) and all I want is crisps and burgers. Also wine, I want a glass of wine… doc says not for now, but please tell me the odd glass of red when you’re on mycophenolate is an option at least after a while….

On a positive note I had an ultrasound of my kidneys and follow up appointment today and they all look ok.  The Renal doctor was very helpful actually in explaining my situation to me a bit more, he said I have a systemic vasculitis that is currently only presenting in my eyes (uveitis), it may have also been in my kidneys but, if so, the steroids have stopped it for now.  He said they will monitor me regularly to check it doesn’t spread, but hopefully because it’s been caught early the drugs should control it.  So, that is good news in the scheme of things.  The Renal services waiting room experience was a leveller – lot of very poorly people in there and really I should be grateful that I’m not that sick.

Ah well, I guess sometimes things just get on top of me a bit and it’s hard to cling to the positives, but hey aren’t I allowed to be a bit down in the dumps just a little bit?

It’s my party…

Yesterday I turned 35, not something I’m particularly pleased about but at least it was an excuse for being spoilt and I had a lovely day.  My husband gave me the lens I wanted, since I have decided that even though my eyesight is not brilliant I’m not going to let it put me off my photography hobby (it just means I need to take a few more shots than I used to to ensure I get some in focus!).   Some gorgeous flowers arrived in the morning from my Dad and step-mum and I spent some time praticising using my new camera lens taking some pics of them.  My mum came over and gave me lots of goodies including a pretty Cath Kidston bag and an SOS Talisman bracelet which I had wanted so I can keep a note of my medication safe.     We went to Newcastle Quayside in the afternoon and had a lovely Italian meal and I indulged myself with lots of food and wine and ‘forbidden dietary pleasures’.   In the evening we watched the Sopranos which we’re working our way through and loving.  Having had over 5 hours sleep the night before meant I felt able to enjoy the day without feeling completely wiped out. So all in all a pretty good day.

It’s All Getting A Little Bit Complicated Isn’t It…

I’m building a pretty good relationship with my GP right now, I guess that’s a positive to come out of this crappy situation!
“It’s All Getting A Little Bit Complicated Isn’t It…”  is how he greeted me today when I went for my appointment, “Is it? I’m really not sure what’s going on right now!” was my weary reply.  He explained that, yes, in addition to the uveitis in the eyes, the Renal people suspect vasculitis is underlying in the kidneys too and I’ll just need close monitoring for it.   On a plus side my blood pressure was normal and the kidney function is looking ok at the moment. So off I went with a 3 page prescription and with the promise of more temazepam should I need it.

I had my MRI scan on Wednesday, I survived but it wasn’t the best experience I’ve ever had.  I clenched my eyes shut as they put me in the tube, but as soon as I sensed I was in there I had a complete panic attack and had to be pulled out.  They let my husband come in the room and I think just knowing he was there helped with the anxiety because I managed to cope when they put me back in.   They played my Rumer CD and I zoned into it despite the horrible clunking noise all around me, until I realied my ring finger was vibrating furiously and that I still had my wedding ring on and I wasn’t meant to have metal in the MRI then I freaked out and convinced myself I was now going to get some MRI-magnet-metal-induced-disease!  Fortunately the radiographer said it wasn’t a problem and not to worry.   My husband, sitting outside the scanner, had taken his belt off but had forgotten to take his watch off and the magnet was so strong it stopped his watch during the scan (fortunately it’s working again now).  What MRI novices we are! 

I am starting to come to terms with the fact that my life will never be “back to normal”, I’m not going to be healthy and well again like I have been until now.  I am going to have to live my life on high levels of powerful drugs and I am going to be a regular visitor to Newcastle hospitals and the GP surgery.  I might have to add my doctor’s to my Christmas card list – I certainly see more of them than my friends these days. 

Anyway, after 2 nights of no sleep I am treating myself to sleeping pills tonight – tomorrow is my birthday and I’m determined not to feel rubbish all day – a good night’s sleep should help with that.

Time Out

ImageAfter weeks of anxiety about it, I did it, I went to France and had a little holiday.  I have posted this blurry picture of the Bayeux Tapestry because (unintentionally when I took it) it actually represents rather well what the world looks like out of my left eye at the moment.

It’s been a while since I posted and there have been a few developments, but ultimately I’m still a bit in limbo with ongoing tests. The opthalmology consultant felt that the steroids were helping to reduce the inflammation in both eyes and is tapering down the dose, but next week I am starting on the immunosuppressant mycophenolate mofetil, the aim is to get me on this longer term and off the steroids – ANYTHING to get off the steroids please.

In terms of prednisone side effects, I don’t feel like I’ve put on a lot of weight (although a rather liberal attitude towards wine and cheese in France has meant I’ve avoided the scales since I got home), I don’t ‘think’ I have a moon face, I’ve noticed my skin is a bit papery on the back of my hands.  The main issue is still the sleep (I’m averaging 4 hours a night) and the anxiety.

Before I went away I also saw the Renal consultant who put me on blood pressure medication (just another pill to add to the mix), I’m having a blood test this morning to check my kidney function and an ultrasound on Monday before going back to see them again next week.  From the sounds of the letter I received whilst I was away it looks like they suspect my kidneys may be being affected by this autoimmune disorder too.  This pisses me off.

Tomorrow I have the dreaded brain MRI scan, I am going to take my Rumor cd to try and chill out. I’m not sure if I’m more scared of the claustraphobia or the fact they may discover a horrible tumour – probably both. Please don’t let this horrible condition be affecting my brain; this could be possibly more than I could bear right now.

Normandy was lovely by the way – sunshine, pretty towns, good food and, yes, Mont St Michel is hideously crowded in August but beautiful to look at.

Just over a week…

So it’s been just over a week since I started rattling around with pills, not the most enjoyable week of my life either; I can’t notice any difference with the eyesight, but I guess that would be expecting a lot in a short space of time.

Friday was our 10th Wedding anniversary, we had been due to spend the night away at the hotel where we got married, but I felt that bouncing off the walls on steroids didn’t make for a very romantic evening so we’ll do that later in the year when things (hopefully) die down a bit.  Instead we rented a film and I decided to try a couple of glasses of wine  and that was fine.  I also had some truffles and crisps so a really naughy night, but I figure I have to let myself have treats once a week!    Most brilliantly about the wine was that after I assured my husband that “the one thing you can be absolutely certain of is that I won’t fall asleep on the sofa”  (close to midnight watching telly) I promptly fell asleep until 1am!  Maybe I’ll have to have wine more often…

So I had Friday and Saturday night without any temazepam as the doctor told me to take it for 2-3 nights and then have a break.  After the wine on Friday I got some sleep, but last night I only had 3 hours broken sleep and yet again I feel like rubbish today.  My choice is take tranquilisers at night and have a decent night’s sleep and better day ahead (but risk addiction if done every day) or no tranquilisers, no sleep and the prospect of a grumpy, tired day (it’s true the wine helped, but I don’t want to have this every day) .  This is what’s killing me with this medication at the moment, the sleep issue. We go on holiday on Thursday and I’m already planning which days I get sleep and which I don’t. 

Tomorrow it’s back to Opthalmology to see if the steroids are doing their business, I’m keeping everything crossed that they are so I can get them tapered down and off them as soon as I possibly can.