Today I had a meeting with my manager and human resources. The bottom line is, I am no longer capable of fulfilling my role as a primary care dementia practitioner. This is a role I had longed for, and was enjoying immensely. I am so disappointed. It wouldn't be so bad if I was no good in the role, the problem is that I was, and it gave me great satisfaction to work so closely with those living with dementia, and those families/agencies/surgeries who are supporting them in their homes. I have tried everything I can think of over the past year (I first went sick last August) to get myself back to a normal level of functioning. I have no more weapons left in my armoury. A further meeting will be held on August 11th where my contract will be terminated. My manager has been brilliant, she could not have been more supportive, but I can't fulfill my role when I have constant "steroid brain fog", or feel tired all the time. I don't even feel I look presentable anymore. My skin is itching and rashy, my hair is falling out, and I have spider nevi on my face and neck. I have also gained a stone and a half since all this started. I know it can take between 18 months and 3 years to reach remission, and whilst I am pretty much biochemically in remission, clinical remission seems a long way off. I have no choice but to give in to this and just accept that what will be will be.
The good news is, I saw the eye hospital last week, and whilst I still have raised pressure in my eyes, there is no sign of damage to the optic nerve, so no treatment needed.....yet. I have also seen the dematologist, but due to brain fog, can't remember what she said was wrong with my skin, but it's benign and needs no treatment, just stay out of the sun. Due for bloods next week and hep clinic afterwards.

The reason I haven't posted for a few weeks!

I've been busy helping to hand rear 5 puppies over the last 2-3 weeks. Their mother became very ill during labour, had to have a c section and blood transfusion, and was so ill she was unable to be with/feed her pups. So it's been 2-3 hrly feeding/sterilising bottles/washing......general mayhem in our house since then. They are gorgeous, but we are now beginning to resemble zombies. Next week should be even more fun when they start to be weaned! All this whilst we have 5 dogs of our own and a petcare business to run.  I guess its no surprise that I'm VERY tired and aching all over. I am still having a nap in the afternoon, but the last few days I seem to be hitting a brick wall with exhaustion. My joints ache constantly, and my skin is still driving me mad. I only seem to be able to manage for a few hours at a time, then have to rest. I'm also much slower than I used to be before . I have constant brain fog, and keep forgetting things, and sometimes just can't get the right words out. Steroids have a lot to answer for. I can't seem to stop moaning all the time about how I feel, just wish I could be more positive, but it's really hard when every morning is such a struggle and you feel like you're wading through treacle just to get washed and dressed, never mind doing anything else.

Seen by Proff Cramp today. Pred to stay at 12.5mg for another 3 weeks, then reduce to 10mg.Azathioprine to stay at 75mg. Don't have to go back to clinic (or have bloods done!) for 6 weeks. Everything stable biochemically, so he's happy that things are finally settling. The price to pay however, is all the side effects, which I have to say, I find debilitating. I'm still needing to have bed rest each day, and find I ache constantly and have no stamina. If I push myself and do too much, I have to pay for it for days afterwards. My skin is still a problem, but if I take antihistamines I just fall asleep! I am now finally accepting that this is with me for life, and I will never be my old self again. I will not be well enough to return to my job next month. To perform my role effectively, I need to be able to manage to juggle far more balls than I currently can. It's not just about staying awake/mobile for 4 hrs a day, it requires much more, and I know I just cannot do it.

Alice and Bobbie the donkeys (for Jo)!

Alice is the grey one (10yrs) and Bobbie is her daughter (6yrs). Alice is sporting a liberal covering of sudocrem for treatment of rain scald which she had earlier this year!

This is what you look/feel like when you eat too much spring grass in one go..............or did Kaspar steal my steroids??!!
Things going ok except for intolerable itching. This only started about 2 weeks ago, and is largely on my forearms, but also neck/trunk. Not sure if it's to do with increased Aza? Or photo sensitivity from the aza? Colleen suggested eurax cream, which is brilliant, but would like to know the cause, and why now if its the aza? Had been using factor 30 on anything exposed from the minute the sun came through a few weeks ago. Come on Jo...........you always have the answers!!!

Well it turns out that the blood results that were given to me yesterday were from a previous date.............not the 16th after all! So, when seen in clinic today, fearing the worst, I was pleasantly surprised to be told that in fact, my bloods are nearly normal, and only slightly in the red now!! I had spent 24hrs convinced it was all going wrong again. As it is, they have agreed to reduce the pred a tiny bit to 12.5mg, and leave the azathioprine at 75mg. I don't have to have bloods or be seen for 3 weeks....hooray. Very relieved by the news....so treated myself to treacle tart for tea tonight.

Ok........why is it that when there is 9 miles of beach, they have to sit on top of you????!!
Had a lovely break in Dorset, lots of walks and lots of rest. All over too soon, although always good to be home.
Had bloods done just before we went on 16th. had them done again today, and the results of the 16th were really bad news......ALT rising again and back up to 79. Will get todays results tomorrow in clinic........can't say I'm looking forward to it. I'm still on 15mg pred and 75mg Aza. My skin is itching all over and forearms covered in marks/discolouration. Another tooth broke yesterday (thank god they have been back teeth!) Joints ache and am very tired, but hey...............no nausea. Face looks like a hampster, hair falling out etc etc etc....... could live with all of this if the drugs were doing what they are supposed to be doing. Just can't stand this constant battle with endless side effects when there doesn't seem to be any benefit. Once again, am in this nightmare of not being able to plan. I thought I was back on track, and am supposed to be going back to work in about 5 weeks....come on Jo....tell me it's all gonna be alright!?