3 chicks

Mother's Day began with 1 child in bed and the other 2 elsewhere. By 1.30 I had all 3 of my chicks at home. Unbeknown to me Paul had arranged for Josh and Debs to join us for lunch and Chloe and Ed arrived for pudding ( on their way back from Cornwall). It was the best Mother's Day gift I could ask for, to have all my chicks together. I love having them all home at the same time and to hear them laughing and joking together. It is wonderful to have children who enjoy each other's company as well as ours. I wish I could bottle the feeling it gives me to hear them laughing together and open the bottle on hard days. Thankfully I can store those memories in my minds eye and relive them in the darkest of nights. 
Unfortuntley last night was one of those nights. I am not at all sure why but my back became unbearable painful during the evening and the painkillers I can take didn't touch the pain so I spent the night in agony. Unlike other times I was unable to find a comfortable position and became very moany. Thankfully it is slightly better this morning and the painkillers are now helping. It would be good to know what is causing this, as my mind goes to all sorts of places when I am in pain. It is very hard to control your thoughts when you are in pain and trusting becomes a struggle. This week I am going to look for some bible verses to write out to use in those tough times. Tomorrow's x-Ray and blood tests should help, hopefully to reassure and to put my mind at ease.  I now also have a rheumatology appointment in 2 weeks so I am sure Dr Mc will have a view on this! 
So this week will not be as I had planned. I have cancelled everything and will just concentrate on getting better. I have some gentle back exercises to do when I am able and I will hopefully get to do some crafting and home stuff. It looks like it might be sunny so sitting in the garden will be lovely.  As always I have a stack of books waiting to be read. More lessons on patience beckons! I feel it most for Paul and Ben who have to live with all of this.  They constantly demonstrate their love in their patient willingness to care for me.  I am bored with this but they must be even more so. 

Bath and bathing!

I am sitting in my bed gazing out of my open window enjoying the sunshine after a lovely 5 days away. Bath is a beautiful city and the flat we stayed in was perfect. It was very central, 1 minute to the Abby and 30 seconds to M&S! My back did limit my activity but not too much. We swam in the beautiful, heated rooftop pool accompanied by raindrops. This is a strange feeling - like bathing in the outdoors. I had been concerned it wouldn't be warm enough for me but it is wonderfully warm. We visited the Abby and again saw the wonderful Bath Diptychs ( embroidered panels depicting Jesus' life and death). Visited Bath Royal Theatre and saw Pygmalion with Alistair McGowan as Professor Higgins. We had a box overlooking the stage which was really lovely and so close to all the action. Kitty visited one evening from Stroud which was really lovely. I even managed some shopping on my own.  We had afternoon tea in the baths,  lunch in the theatre restaurant, hot chocolate in the pump rooms ( imagining I was Jane Austin)  accompanied by a strings trio, and many cups of coffee from the lovely coffee machine in the flat. Most of our meals were courtesy of M&S and beautifully cooked by Paul. I was very thankful for a lovely cosy warm flat and plenty of painkillers to help me through the week. 
My back is improving every day now - thankfully. I had started to be concerned that this would be the new normal and I think that would have then needed to involve a wheelchair, so I am so grateful for steady improvement now. It has reminded me that even though I have daily aches and pains from my hands and feet I really struggle with bad consistent pain and really feel for anyone who has to deal with that all the time. It is so wearing and means that it is almost impossible to concentrate on anything else. For me it is not helped by my kidneys which mean that there are very few painkillers that I can safely take and even then they are very low doses? Thankfully - hopefully - that adventure will be over soon. I doubled my dose of azathioprine last night and apart from the nausea I seemed to have coped with that. We will see what my bloods are like on Tuesday. 
This weekend - recovery from the week, washing, church and roast dinner and enjoying the sunshine. Time to plan the seed buying I think and get on with planting. I love this time of year. 
Photos to follow hopefully! 

Coughing and a wonderful GP

This week has continued in a similar vein to last week. Quite a lot of pain and discomfort and not much activity. Yesterday I managed to make my back much worse by coughing! Not to be recommended, especially when you have to go an have a blood test at RBH!
Thankfully I had an appointment with my wonderful GP today, who was very reassuring but also very thorough. After lots of prodding and pushing she feels that it is probably connected to my muscles but just to rule out anything else I am to have an x-Ray when I come back from Bath. She also suggested that if I still have the pain the following week I should contact oncology to arrange a bone scan. In the meantime I have more painkillers, muscle relaxants and exercises to do. My blood results are ok and don't show any problems from the azathioprine - so far! I will increase the dose when I return from holiday and have more blood tests.Thankfully she was happy for me to go away and to wait to increase the azathioprine when I come home. I am so thankful for her wise advice and her thorough care of me. I feel in safe hands.
I am really looking forward to time away with Paul and some different walls to look at! we have booked a lovely little flat in the centre of Bath only minutes from the Abby and the baths. Hopefully we will be going to the thermal spa to swim in the open air pool and have afternoon tea. We have also booked tickets to see Pygmalion  at the theatre. I am really hoping that my back continues to improve over the weekend and with the painkillers I am able to cope. It would be really lovely to see a bit of sunshine too - or is that asking too much? I am off now to write a packing list - I hadn't wanted to do that before as I wondered if I would manage to go .

Monday morning again......

 - the weeks seem to be rushing by despite me spending most of the last one in bed. I have been so thankful for the sunshine and managing to get outside - even sitting on our swing seat yesterday. Unfortunately I didin't get to London on Saturday as we decided it would be too much for my back, which is very slowly recovering. But I did manage to go with Chloe to her dress fitting. We have the most lovely lady doing the alterations who gave up time on a Sunday especially for us. Throughout our wedding preparations we have been blessed to find wonderful people who go that extra mile to make something work for us. I managed this dress fitting with no tears! Just about! There is something so beautiful about watching your daughter prepare for her wedding. I was very aware this weekend of the changing times. I really miss my girlie and had thought we would have plenty of time for chatting but because I didn't go on Saturday I missed all that chatting time on the journeys and through the meal. So when she went it just felt much too short a time. Her weeks are ao packed with work and sleeping that we have little time to catch up and when we do it is usually wedding stuff. I miss her. I am sure this is not helped by having so much time spent sitting in bed rather than being busy! 
Hopefully this week I will return to some 'normal' stuff. Doing a little more at home and maybe a few little trips out. I have begun my azathiprine again so will need a blood test later in the week. Oh how exciting my life is! I need to go slowly though this week to be better enough for our trip to Bath next week which I am so looking forward to and would be very , very sad if I couldn't make it. Even If I have to move from this bed to their bed I will still be going!!!!!!!! 
I hope you manged to enjoy the sunshine this weekend - Spring is definitely here with all its beauty. Our garden is clothed in yellow and green. Papageno is loving the warm and spending much more time outside. HE has discovered that he can get back in through my bedroom window and now sits on my window sill meowing for me to let him in. He loves it if it is left open for him to come and go as he pleases. He has been a lovely companion - especially on Saturday when I was on my own for most of the day. Thankfully I had sport, sport and more sport to keep me occupied! 

Ongoing journey

Well this journey continues....... Good day on Monday, wonderful afternoon tea with the lovely ladies and gentlemen of Cameo. I was still struggling with pain which had now focused on my left side and in my back. So I made a GP appointment for Tuesday but then unfortunately I found I couldn't get out of bed because of extreme pain. My back had spasamed and I was unable to move it. I had a few minutes of panic thinking whatever is going on now but then we decided that this could be nothing to do with anything else and had just happened. I have a wonderful GP who phoned and was so, so helpful. She admitted that she had no idea what was going on but found some drugs I could use to help to cope with the pain and the spasams, in very low doses because of my kidneys. So the last few days have been spent in bed moving as little as possible and allowing my back to recover. I have had to stop the new drug in case it has anything to do with it. I will restart once my back is better.  Ho Hum! I am so thankful Paul works from home so that he has been able to look after me. 
So we shall see how quickly I can recover. I so want to go to London on Saturday but that may not be possible now. 
Again it has been such a big reminder of how we take so much forgranted. Everyday we expect our bodies to do what we want them to do - to take us to wherever we need to go and to function efficiently so that we can achieve all that we want. It is only when they break down that we realise how amazing they are and how amazing it is that they work so well everyday. 
We are fearfully and wonderfully made. 

Sunny days ....

So thankful for new days - especially when they start with sunshine. What a beautiful day we had yesterday. We had a great service at church and then I spent the rest of the day in bed watching sport ( flicking between athletics, Paralympics and rugby) with the window open listen to the signs of spring ( lawn mowers and birds). Paul and I really enjoyed Jeeves and Wooster on Saturday although I struggled feeling poorly. I am so glad I can still manage to get to London but it does leave me so exhausted on the way home and for a few days after. I am still struggling with some pain and have been told I can only take paracetamol and nothing else - ho hum! 
Enough moaning - I am looking forward to the week ahead, coffee with friends, afternoon tea with the ladies and gentlemen of Cameo, some tutoring, bible study and seeing Spring unfold. Next weekend we are going to see Sleeping Beauty ballet with Ed and Chloe and then wedding dress fitting on Sunday. So much to look forward to. 

Just enough light?

So the week didn't progress as I had thought. I hardly slept on Wednesday night as I had very bad kidney pain. So Thursday involved many phone calls with hospital and GP surgery, lots of blood tests and urine tests. Visits to hospital and Gps and lots of waiting and praying. To cut a very long story short - I was probably fighting off a urine infection that had spread back to my kidneys, consultant informed and stopped my azathipoprine for a night and recommended not increasing the dose at the weekend but continuing for now on the lower dose. It appears to have settled down now. 

Fear is an interesting feeling and I can easily slip into that place where I allow it to take hold and the memories of dialysis and illness creep into my thinking. Thankfully  I am learning to capture those thoughts and not dwelling on them but casting them away and allow the truths I know to control my thoughts. God has been and always will be in charge of my life and my death. He has numbered my days and only he can halt my life. He doesn't promise an easy road full of rose petals and sunshine. But he does promise he will always be with me - even in those dark nights, even when they can't get my blood first, second or third time, even when I feel pain and doubt that the Drs know what is going on. Just enough light for this step I am on. So yet again I place my life in his hands trusting that he is in control. So much of our lives are about choice - we can choose how we think and feel but we can't always choose what happens to us. 

So - all being well Paul and I are going to see Jeeves and Wooster ( Paul's Christmas present) tomorrow. Sunday we begin our Passion for Life week at church. This includes services, afternoon tea with a speaker, curry night, women's breakfast and a meal again with a speaker. As you can see we are a church who likes to eat! I am organising bookstalls and of course making cakes! 

I hope you have good weekend plans - maybe we will have a few splashes of sunshine. 

Update.....

What a beautiful day it was today - how lovely to see the sunshine.  After all the rain and grey days it is wonderful to feel the sun on our faces again. 
Thank you for your messages. I am ok. I began the azathioprine on Saturday morning and then spent most of the day in bed feeling very woozy and sick. So we decided for me to try taking it in the evenings so I sleep through most of the wooziness. This has worked well and I am tolerating the drug well, with few side effects. I had a rheumatology appointment at the beginning of the week and saw my consultant. He confirmed that the scleroderma had returned and that I now have calcinosis ( little lumps of deposited calcium) on one of my fingers. He is concerned about the amount of damage I now have in my fingers and has referred me to an occupational therapist who may suggest that I need to wear splints on my hands. Hopefully I will be able to tolerate the new drug as we increase the dose and that should stop the damage. I am going to have an MRI scan of my hand and wrist which will be interesting. So the plan now is to have a blood test tomorrow to check that my bone marrow is coping with the drug and then if that is ok I will increase the drug on Saturday. With weekly blood tests hopefully we would catch any changes in my blood levels. I return to the hospital in a few weeks and then we will increase the drug again. I will be so glad when this is all sorted and I can get on with life. The last 3 months have been quite  a struggle and I feel detached from ordinary life. 
All being well Paul and I are going to London on Saturday to see Jeeves and Wooster. I am really looking forward to that.