Thanksgiving!

Thank you SO much for all your messages, emails, texts and visits. I feel that I have been wrapped in a big cosy blanket of friendship. I am having a tough time but it is made so much easier with friends and family. I am looking forward to Chloe and Ed coming tomorrow and Kit on Saturday and willow wreath making on Saturday - all being well. I am SO hoping that Saturday is a much better day! 

Today is Thanksgiving in America and I thought I would make another list to remind me of my many blessings. 

• my wonderful husband
• my beautiful children and their partners 
• creator of the world holding onto my hand 
• my little black pussy cat 
• my friends 
• my church 
• my ladies bible study sharing life together
• my book club ladies 
• my cosy bed and beautiful bed room
• my brand new phone 
• my kindle and books
• tablets that keep me alive
• comfy jamas 
• lovely hand cream
• sparkly lights
• Christmas coming
• sunshine 
• soup
• ice cream
• washing machine that works 
• texts, emails and messages
• warm cosy fire 
• coffee in the morning
• flowers
• dvd watching with Paul

The list could go on and on. I am SO blessed and have so little to moan about. 


Most of All Thanksgiving Day brings to mind
the blessings in our lives
that usually go unnoticed:
a home that surrounds us
with comfort and protection;
delicious food, for pleasure
in both eating and sharing;
clothes to snuggle up in,
books and good entertainment
to expand our minds;
and freedom to worship our God.
Most of all I am thankful
for my family and friends,
those treasured people
who make my life extra special.
You are part of that cherished group.
On Thanksgiving, (and every day)
I appreciate you. Happy Thanksgiving! By Joanna Fuchs

mmmmmmm.........

So..... things are not going so well. But thankfully Paul and I are laughing as my body appears to be falling apart. I am so thankful for a husband who can mange to make me laugh at almost anything. I now carry my bucket at all times and don't stray far from a toilet (I won't go into any more details). I am now only able to 'eat' liquid food due to the soreness of my mouth. I have been to the GP who has prescribed various things to try and counter the side effects whilst still trying to protect my kidneys which means that I can't take the usual things. She thinks the side effects are so bad because my kidneys are slow to clear the methotrexate from my system. Hopefully the side effects should lessen as my body adjusts to the drug. I so hope that will be before Christmas otherwise it will be quite tricky.
I have had to cancel quite a few things which is very disappointing but hopefully that is just temporary.

In the meantime I am 'doing' Christmas online and reading lots. I do love hearing from you and hearing about your lives as I sit here so do email me. anne@thewhitefamilysite.org.uk if you have time.

For the joys and for the sorrows.....

I have been reminded recently of a song that my Mum loved when she was going through a very rough time

For the joys and for the sorrows
The best and worst of times
For this moment, for tomorrow
For all that lies behind
Fears that crowd around me
For the failure of my plans
For the dreams of all I hope to be
The truth of what I am

For this I have Jesus
For this I have Jesus
For this I have Jesus, I have Jesus
(Repeat)

For the tears that flow in secret
In the broken times
For the moments of elation
Or the troubled mind
For all the disappointments
Or the sting of old regrets
All my prayers and longings
That seem unanswered yet

For the weakness of my body
The burdens of each day
For the nights of doubt and worry
When sleep has fled away
Needing reassurance
And the will to start again
A steely-eyed endurance
The strength to fight and win
 
For this I have Jesus
For this I have Jesus
For this I have Jesus, I have Jesus
(Repeat)

  Graham Kendrick 

So many of these words resound with me at the moment. My planning isn't going how I would like it to. I write lists and complete one thing! I get frustrated by the failure of my plans - but here we are reminded they are just my plans not God's, my dreams, my regrets, my burdens. But for all of this I have Jesus and His plans for me are not necessarily mine but they are the best plans. The refining plans! 

This week I am making less plans! I am hoping to go to pilates,tutor, make an advent ring for church and have coffee with a friend. I am really looking forward to a willow wreath making morning on Saturday. I am also hoping to write our Christmas letter and start the Christmas cards and continue with my knitting. Ohhhhhhhhh - that already looks like quite a list of plans! It is really hard to just go with the flow when you are a planner!

Being refined.

This week has been hard. I took the first dose of methotrexate on Tuesday afternoon and by the evening the nausea kicked in and continued until Thursday evening. In the end I gave up eating for a while as that stopped the sickness! Thankfully by Thursday evening I was feeling better and was able to go to book club. This is such a wonderful group of ladies and I love spending time with them. By Friday I was much better and managed to do the flowers at church, go shopping and host bible study. Today I have re -made the Christmas cake after a bit of a disaster with the first one. I am now back in bed having taken today's dose of methotrexate and we will see how I get on.

In bible study we are looking at 1Peter and I think we were all challenged by the idea that trails and sufferings are part of God's refining. 

In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honour when Jesus Christ is revealed. 1Peter1 v 6-7.

We so want to avoid suffering and trials and yet if we can grasp that this is part of the refining process how much easier would it be to go through these things. If our desire is to grow more like Jesus day-by-day then suffering WILL be part of that process. We all know that in good times we quickly become apathetic, our prayer life decreases and our need for God also decreases. It is in those dark, hard days that we cling hardest to Jesus, holding tight to his hands.

For those of you going through tough times I know how hard it is to keep on holding on tight but just maybe it helps to know that you are being refined. In Peter it also reminds us again that this is not our home - we are headed for a place where there will be no more pain, no more tears, no more suffering. Hold on tight - He is faithful.

The plan is.....

I love a plan!

Good meeting with rheumatology consultant and we have now got a plan. He examined me and looked at my bloods and decided that I do have active joint disease. He started counting the joints that were affected but gave up counting after a while! The treatment plan is for me to have methotrexate which you usually take once a week but I will split the dose over 2 days a week to try and counter the sickness. It will take between 4 and 8 weeks to work. In the meantime he was very keen for me to take a low dose of steroids. For any of you who know my history you will know that steroids and I don't get on. I had every side effect under the sun including paranoia. It is also thought that steroids might have been the cause of the scleroderma crisis going into over drive  and knocking out my kidneys. So I have decided after some discussion that I won't take those! My family are very happy with my decision! This just means that I will have to cope with the pain until the methotrexate works - something I am prepared to do rather than risk the 19% function I have in my kidneys. I really don't want to have to do dialysis again if I can avoid it. So here we go again! Hospitals will now feature regularly in my life with fortnightly blood tests and visits to GPs and consultants. I will have to be a bit more careful again about bugs and germs, not that I have been too close to them since getting ill originally. Hopefully this will work again as well as it did before and I will return to my busier life after Christmas. In the meantime I will snuggle down with my cosy fire, patchwork quilt, books, sewing, knitting and writing and wait it out. Thankful for good friends and family to travel this journey with me.

Thank you for all your emails and texts today. I have appreciated all your thoughts and prayers.

Today is the day for a plan!

Thankful for a beautiful bright morning and today is the day for a plan. I feel I have been in limbo waiting for today and a plan! As ever all things are possible with a plan! I see the Consultant at 10. 
My thoughts and prayers are with my friends at school who are facing Ofsted today. I am sure they will all be fine - they are excellent. Thankfully they face it together as a wonderful team.
 

3 years anniversary

3 years ago Paul wrote the following.......

Paul writing: Anne went into theatre at 8:30 this morning, and texted a few minutes ago, saying that she was awake, "bit sore but fine." Thanks for many messages and prayers

 Where have those 3 years gone? How my life has changed. I have many anniversaries of all the 'stuff' that happened but maybe this is the one that counts because it is the day I became cancer free. I am so thankful for a wonderful surgeon who left such a beautiful neat scar I have never been sad about. Recently I found out that my friend Steph who wrote 'Bah to Cancer' also shares my anniversary but today she celebrates 5 years. Read what she has to say here - http://bahtocancer.com/ Congratulations Steph! 

This week - meeting with consultant at 10 tomorrow, coffee with friends, book club (reminder to self - finish book), flowers, tutoring, maybe some baking (using the Kenwood a lovely friend has lent me to help with my hands), Christmas card making, some sewing and plenty of resting!  I hope you have lovely weeks planned that doesn't just consist of work.

Ballet beautiful

weWe















We have had a wonderful day in London - the fellow above is a ballet dancer - Carlos Acosta and he was signing books at Royal Opera House and we got to see him. He is as gorgeous as this picture suggests! 
Romeo and Juliet was beautiful and so, so sad. Even though I knew the ending (of course) it still leaves you gasping that they get the communication so wrong. The pas de deux between them in the bedroom is stunning and somehow manages to convey through dance the wonderful journey of falling in love.



London is looking very beautiful as it prepares for Christmas 

Celebrating ....

It's been a tough week but I think I am coming out the other side. Adjusting to the tiredness and stopping much of what I had been doing is hard. I have been reminded of how much you can't do when both your hands and your feet hurt. Hoovering, baking, ironing, sewing, knitting - all things I love (well apart from the ironing of course) have had to be curtailed. I can do them but only for short spaces of time before the pain becomes too much. I have an appointment with the consultant on Tuesday so we will see what he has to say. I am so thankful that I can go and see him so quickly. 

Today we are off to London to see the ballet of Romeo and Juliet with Chloe and Ed.  I am really looking forward to being out and hoping that I cope. We are celebrating the end of our mortgage payments - we are now the proud owners of a house! Who would have guessed it takes that long!

This week in-between resting I have been making Christmas cards and sewing a Christmas robin which has been great fun. 

Smile.....

“Smile every chance you get. Not because life has been easy, perfect, or exactly as you had anticipated, but because you choose to be happy and grateful for all the good things you do
have…” Quote found on MarcandAngel.com

 This quote is a reminder to myself to look for all the good in today, to seek joy and to find it and to reflect on all my many blessings and not to focus on all I haven't got. 

My appointment with the GP on Friday left both Paul and I feeling rather sad - it felt like a backwards step and reminded us of the journey we had been on and would rather not repeat. She is referring me back to the rheumatologist who I saw originally which is great as I know that he will make the right decisions regarding treatment and that I will leave my appointment feeling like it will all be alright. He has that gift! My pain is increasing and I am now aware that I can't do some of the things I could do a month ago. Walking any distance has become tricky because of the pain in my foot. And my energy levels are very low. All of this is Ok as the treatment was very effective last time and I am sure it will be again. But I have to get my head around the change in circumstances again - and having to say a lot more no. I also have to depend on others a lot more - ho hum! So blood tests this week and hopefully seeing the Dr in the next couple of weeks.

Ok - enough moaning and groaning. We had an unexpected pleasure when Chloe and Ed came to lunch yesterday on their way back to Kent from Cornwall. It was so lovely to see them.

This week - coffee with friends, flowers, tutoring, blood tests, bible study and on Saturday - London to see Romeo and Juliet.

Chronic Babe?

I have found a wonderful bog which is written by a young woman who is coping with a collection of chronic conditions. She calls her followers Chronic Babes. What a great name! I think maybe I am too old to be called a Babe but I really like the idea. On her blog she shares ideas for coping with a chronic disease and there are lots of helpful tips. I will be going back to this when I have some more time and putting into practice some of the ideas she shares. Her latest list is 100 ways to answer the question - How are you? It is a problem I often have. As you can imagine I get asked this often, probably every day. And knowing me I expect you can guess I like to be honest but that isn't what people necessarily want to hear and they certainly don't want a great long catalogue of all my ills! So this list is helpful. Here are some of her suggestions 

• Do you want the short or the long version! 
• I'm AWAP(as well as possible)
• I'll let you know when I figure it out! 
• Ready for tomorrow
• I'm taking it easy 
• Bunch of grunts, gurgles, and other random noises) pssh, fft, mmhm,
• Give me a chocolate bar and I’ll be fantastic
• Somewhere between blah and mehUnder construction 
• As happy as a clam, a clam that’s
  been cracked open, doused in lemon
  and shot down the gullet of some
  tourist in a tacky Hawaiian shirt 
• I’m feeling really grateful for this beautiful day. 
• I don’t feel that great, but my hair looks awesome

So if you meet me and ask me how I am you might get a rather random answer!  

If you ask me today I will be answering - I'm feeling grateful for this beautiful day! 

I am glad it's not raining and  I am off to pilates with my new ankle and hand supports which hopefully will help me to do more during the session this week. I am looking forward to seeing the GP tomorrow and starting the process of getting sorted and particularly of finding out what painkillers I can use that won't cause more damage to my kidneys.  

 

New week and sunny days

A new week beckons and thankfully it is starting off with a sunny day. I am getting my head around my change in energy levels and more pain and have gone back to only trying to do one thing in a day with more resting. It is hard to cut back and frustrating to see things which need doing and not to be able to do them but better to do less and be able to manage than end up being sick and cancelling things. Chronic illnesses are so hard and maybe even more so for the families who have to adapt to cope with the ever changing situation. I am so thankful I am married to someone who is laid back and takes each day as it comes as some days I am well enough to clean and tidy the house and cook all the meals and other days I end up in bed and he has to do it all. I am good at planning but can be rubbish at carrying out the plans!

At the weekend we had a wonderful visit to the caterers for the wedding. It was great to meet them and see their set up and to leave feeling very reassured that all was in hand. They raise pigs and turkeys and we had fun seeing them. Although very sad to hear that a tree had fallen on some of the turkeys in the winds the other night. Some of the turkeys were in a separate cage as they were still traumatised by the event. Not sure how you tell that a turkey is traumatised!

This week I have coffee with friends,tutoring, pilates, flowers and bible study and some bulb planting. A less busy week with more gaps for resting. I have bought some more knitting so that will keep me busy along with the pile of books I am reading for church.

I hope you all have good plans for your weeks . Thank you for those that have been in touch I do love hearing from you and hearing about your lives. It is encouraging to hear of those who read this blog and pass it on to friends who are struggling or facing difficulties in their lives. I sometimes feel I am writing into a vacuum so it is good to hear.