20 questions about 2013

20 Questions for a New Year’s Eve Reflection 2013

1.      What was the single best thing that happened this past year?

2  things – my beautiful girlie becoming a Dr and getting engaged to Ed.

2. What was the single most challenging thing that happened?

RA returning and Methotrexate poisoning followed by an infection.

3. What was an unexpected joy this past year?

Chloe and Ed’s engagement

4. What was an unexpected obstacle?

RA returning – I have struggled to accept its return.

5. Pick three words to describe 2013.

Frustrating, busy, happy (and accepting)

8. What were the best books you read this year?

Galatians for you (study book by Timothy Keller which reintroduced us to grace) 

9. With whom were your most valuable relationships?

Continues to be my family, my ladies bible study group and my friends

10. What was your biggest personal change from January to December of this past year?

My more recent loss of energy due to Ra and having to accept that I can’t always do all that I want to

11. In what way(s) did you grow emotionally?

I am learning contentment (Not there yet)

12. In what way(s) did you grow spiritually?

I began to understand grace – not about what I do but just trusting in His grace because Jesus has done it all

13. In what way(s) did you grow physically?

For most of the year I continued to grow my tummy! Only to lose most of it in the last month!

14. In what way(s) did you grow in your relationships with others?

Maybe I am learning to allow people to help me more

15. What was the most enjoyable part of your work (both professionally and at home)?

I continue to love working with the children that come to see me.

16. What was the most challenging part of your work (both professionally and at home)?

------

17. What was your single biggest time waster in your life this past year?

I continue to treasure my time and try not to waste it although the internet is a bottomless pit!

18. What was the best way you used your time this past year?

I have loved my involvement with the flower arranging, cameo, bible study etc….

19. What was biggest thing you learned this past year?

That Jesus did it all for me and it is finished – that I can do or add nothing by my actions and therefore I can rest in His grace – this leads to contentment and actions based only on love not ‘ottery’ or ‘mustery’ (ie I ought to do this and I must do that)

20. Create a phrase or statement that describes 2013 for you.

Grace is all I need 


Do have a go at this yourself  - it is good to think back over the year before looking forward to the new year to come. 

See last post for review of my last year. 

2013

This is just a list of the highlights of my year. It has been a happy year even if the end has been rather harder than I would have wished. I am looking forward to the new year with a wedding to plan and hopefully finding the correct drugs to control the rheumatoid disease. 

Year 2013

Jan –

v     Windsor castle

v     Snowy days

v     Family History course

v     Family history writing

v     Les Mis

v     The Hobbit

Feb -

v     Chinese New Year meal with Josh, Debs, Chloe, Ed and Ben

v     Manet exibition

v     Onegin

v     Craft day

v     Great Expectations with Chloe

v     Chloe – has a place in South Thames deanery

March-

v     Bens 18^th

v     La Boheme and afternoon tea

v     World Kidney day reception at Houses of Parliament

v     Mixed programme and Carlos Acosta

v     Alice in Wonderland ballet

v     Kidney day lunch

April -

v     Stroud and Slimbridge weekend with Kitty and Shaun

v     Lunch with Mark, Nell, Lila and Kit

v     Chloe finds out she is going to Chatham

May-

v     Exams – Chloe and Ben

v     Chelsea with Kitty

v     Stratford – seeing friends and As you like it

v     Last renal appointment

v     Bluebell walk

v     Josh and Debs move back to Reading

June-

v     Craft day

v     Lunch with my 3 chicks

v     Summer exhibition at RA

v     Woburn with Chloe and Ed

v     Dr Chloe White

v     Women’s breakfast

v     Paul’s African Sanctus concert 

v     Matilda with Chloe

v     Visit to Chatham with Chloe

v     Chloe and Ed got engaged

July-

v     Lake District holiday with Chloe and Ed

v     Chloe’s graduation

v     HBC – bookstall

August-

v     Ballet – Flames of Paris

v     Day in Bournemouth

v     Buying wedding dress

v     Engagement party for Chloe and Ed

v     London Zoo with Ben and Anna

September-

v     Weekend with Chloe and Ed in Chatham, crabbing at Whitstable

v     Rochester Cathedral

v     Started Pilates

v     St Ives holiday

v     Day with Josh

October-

v     Womens conference

v     Wedding planning week

November-

v     Ballet – Romeo and Juliet

v     Meal to celebrate end of mortgage

And all year

Church

Flower arranging

Bible study

Cameo

Bookstall

Coffee and lunches with many, many friends

Gardening and garden centres

Savil Gardens

Facebook words

On Facebook there is a function which makes a word cloud of your most commonly used words in your status updates. I don't write a lot on Facebook but interestingly this is the list it came up with:

• Hospital 
• Being
• Home
• Link
• Christmas
• Lovely 
• Post 
• Watch
• Doing
• Walk
• Unexpected
• YouTube
• Lists
• Flowers
• Details
• Through
• Year
• Downton
• Last 
• refined
• Sad
• Blog
• Annewhiteblog
• Coming 
• Yippee
• Slowly
• Recovering
• Moment 

What an interesting list of words to sum up my year! You can see I have been face booking more recently! I was really interested to see alongside hospital as a very used word was 'being'.Also interesting to see refined come up, along with lists and details!!!! Wish refining wasn't such a hard thing to go through. Disappointing to see sad come up rather than happy because although recently life has been quite hard overall my year has been happy which you will see tomorrow when I do a look back - always good to look back before starting new things. 

First walk

Today I walked to the first tree in the park across the road bringing back memories of when I was first ill. I am slowly recovering but it is very slow. I am able to do little bits around the house but have to lie down after each activity. Today was my first trip out apart from visits to Joys or the hospital. It is amazing how quickly your muscles forget what to do! 

Christmas was lovely but very hard. We had taken on too much on Christmas Day and I was unable to help at all. I feel very sad to have missed most of it , especially the weeks before for planning and making which I love. Paul has done a fantastic job of managing everything, even buying mistletoe to decorate the house. He knows how much I love Christmas and all the trimmings. It was great to see all the family and we played some great games together - it is lovely now the children can all join in. 
Yesterday most of the cousins got together with partners and went to the cinema together. How lucky are we that they get on SO well. 

Chloe is over half way through her 9 days working. She has had some quieter days but is now in the full throws of hospital business. She is working 3 days of 8-8 shifts, with lots of new admissions after the Christmas holiday. How much we should appreciate our NHS. 

So now it is recovery time for me. We have a quiet week so will try and get out each day for a bit. I am still avoiding major bugs but hopefully would cope with little bugs now! I think it is going to take a while but hopefully not too long. 

I hope you all had a happy and healthy Christmas and managed to avoid too much damage from the wind and rain. I look forward to hearing from you all when you have time. It is so lovely to hear everyone's news. My email is - anne@thewhitefamilysite.org.uk 

Being not doing .....

https://www.facebook.com/AnnVoskamp/posts/725615560783954

Read this post  from Ann Voskamp she says it all........

Hey soul ? It's ok that you didn't get it all done. And it's messy and far from perfect. Smile relief and keep smiling relief.: the one coming to the manager , is the Messiah who assures you : It. Is. Finished. He came to do it all......... so you don't have to stress at all. The point of Christmas is you can rest in His perfection....... because he embraces you in your imperfection. Your greatest gift is that he loves you for being...... not for doing. "The Lord appeared to us.......saying : I have loved you with an everlasting love. Jeremiah 31 v 3. 

Wow! We are loved with an everlasting love in our imperfection. That is good because I am messy ! When will I grasp it is not about doing it is all about being. 

May you all grasp this Christmas that is all that is required - to trust in the  creator of the world. Put your hands into the hands of that baby who came to save us. 

Christmas is here

So Christmas has arrived for us. Chloe and Ed are on their way, the food is ready the house is gleaming, the lights are twinkling. All is well. Just the cake to decorate. Yesterday I managed to do a few little bits with some lying down in between. I am so thankful to be at home and recovering slowly. I am really looking forward to our strictly party this evening and to watching the final, with a box of tissues. 
This will be my last post until after Christmas so may I wish you all and all your loved ones a happy, healthy and peaceful Christmas and new year. I look forward to sharing 2014 with you. 

Slowly improving

I am happily sitting in my bed looking at the blue sky. My guess is it is cold outside but I am snuggled up warm and cosy. My house is looking lovely and twinkly with our tree decorated , my bathrooms cleaned by my lovely sister and the lounge cleaned by my wonderful husband. Yesterday Ben did some of the cooking for the weekend while I directed from a chair and my wonderful hairdresser came and cut my hair.  I am such a lucky girl to be surrounded by such lovely people. Next week may not be quite as we planned but it will still be wonderful.

I am still exhausted but sleeping lots so hopefully my body is trying to recover. I can do little bits but then have to lie down. I am feeling sick in the mornings but that seems to be the only side effect from the plaquenil. Thankfully I am beginning to eat better and feeling hungry which is good. I was very grateful for my 'chemo tummy' (my spare weight in case I needed chemo again). I have lost just over a stone over the 3 weeks.

I hope you are all ok in the business of this week, and have lovely plans for next week. Treasure your days and your family. We can't ever take things forgranted.

A new plan

I have been today to see the rheumatology consultant and I have a new plan. He thinks it will take about 4-6 weeks to recover from this. I have started the new drug called plaquenil which may have some effect but he feels will not be enough to control the joint problems I have. So in a month I will go back to see him and will have 2 weeks of very low dose steroids that will show if my disease will respond to drugs ie it should immediately improve with the steroids. If that happens then I will start a new drug which is like methotrexate called azathioprine and take that alongside the plaquenil. We will start on the lowest dose possible and I will be monitored very carefully for side effects. 
He apologised again for poisoning me and said that he thinks the combination of the poisoning and the bug caused the bone marrow suppression ( very very low white cells, red cells, and platelets) and that is what caused the bleeding. All I have to do now is recover !!!! 

Poor Paul is trying to hold together a very busy job and a household and picking up all my plans for Christmas. Thankfully our children are all grown up and can cope with things being done differently. I shall  be directing from my chair carefully placed close to the kitchen. Next week looks like this for us.

Saturday 21st - 1st Christmas Eve with Chloe and Ed, lots of family coming for crafts and strictly party
Sunday 22nd - first Christmas Day with Chloe, Ed, Josh, Debs, Ben, Anna, Paul and I 
Monday 23rd - quiet day 
Tuesday 24th - 2nd Christmas Eve  - afternoon tea with Joy and Matt 
Wednesday 25 th my birthday! And  2nd Christmas Day with Joy, Matt, Adam, Holly, Natalia, Kit, Shaun, Josh, Debs, Ben, Paul and I. 
Thursday 26th - lunch at Joy and Matts
Friday 27th - lunch with Joy, Matt, mark, Nell, Lila, Adam, Talia,Ben 
Saturday 28th - rest day! 

Lots of lovely family togetherness with plenty of sitting from me!!! I love Christmas

Home and lists!

Lovely day at home yesterday - so glad to be home. I am making lists of my lists on my new iPad! Thankfully I had done quite a bit of  internet shopping before I went to hospital, which arrived while I was in. So this week we will finish off what we can and leave what we can't. It is going to be a Christmas of compromises to make it work. I am so grateful for the internet which allows me to sit here and order food and presents without moving from my bed! I am also really grateful for my  own little elves who are helping. 

I have taken the first of my new tablets - it is called hydroxychloroquine (plaquenil). Hoping that this will do the job without side effects. It takes about 3 months to work so I am glad we are getting on with it. My hands and feet are quite sore. At the moment I am avoiding bugs as I don't think I could cope very well with anything else! So not hugging or going too near anyone! (Apart from my family who are not allowed to get bugs!!!!!) 

Chloe returns to Kent today having been here for the last week. This has not been how she planned to spend her week off but she has been such a blessing. Tomorrow she starts on the acute medical unit for the next 2 weeks. We are celebrating Christmas with her and Ed next weekend before she starts 9 days on the trot. 

I am still feeling exhausted but I guess it is going to take a while to recover. Little steps again! I am wondering if I will ever learn patience! I do think I am beginning to learn contentment - not struggling for what might have been but content with right here and now - glad for a here and now! We have so much to be thankful for and we have so many blessings every day. Maybe we need time to stop and take note of all we have and to reflect on how little others have, especially at this time of year. 

Home for Christmas!

So here I am writing from my bed at home - hurrah! The last 8 days have been quite an adventure and not at all what anyone had been expecting. As ever nothing I have done has been normal. 

If you don't like details stop reading now! 

On 26th November I began methotrexate (a disease modifying drug used to treat rheumatoid arthritis). It is known that you need to reduce the dose for patients who have kidney disease which the drs did for me. When I took methotrexate before I did have some side effects - d &v but only for  a couple of weeks. So when I had that this time I expected it to get better but after 1!/2 weeks it was getting much worse and my mouth and throat were full of ulcers and sores. I was only able to drink water. After the first visit to a&e and having fluids I did improve slightly. However by Thursday I was feeling very, very poorly. I was admitted to RBH and it was decided that I had methotrexate poisoning probably due to my kidneys holding onto to the methotrexate too long. I was given fluids and an antidote. Unfortunately that night I had a very heavy bleed which was very scary. The next day was spent having blood transfusions, platelet transfusions, more fluids, high dose antibiotics. As ever taking blood and putting in canulas has been very difficult they have had to use every trick in the book to try and get into my veins. I have felt so sorry for the Drs, especially in the middle of the night, when they have been attempting to find veins they could use. There have been plenty of discussions about what was happening with quite a bit of interest in the puzzle. At one point I asked a consultant if we needed to know as I was getting better and he said 'of course we do - it's interesting'. So they think I had methotrexate poisoning and a rare infection (as yet unidentified as all tests have come back negative) and the bleeding was probably due to very low platelets. On an ultrasound scan I have inflammation in my tummy which needs some more investigations by the gastric team and I am having an MRI scan in January. Yesterday I turned a corner and started to feel better and this morning they said I could go home. I go back to see the consultant on Tuesday and have blood tests on Monday. 

I am so, so thankful to be home. I was very grateful to be in hospital when I was feeling so ill but once I started to feel better I longed to be home. The staff couldn't have been kinder or more patient with me. I saw many very young Drs over the weekend and at night who all were working so hard. Apart from one rather arrogant, young man they were all delightful. The ward I was on was very busy and the nurses worked their socks off. I have had a delightful registrar looking after me who  explained carefully everything that was happening as best she could always listening to my questions and even meeting with Chloe to answer her questions too. I have had visits from some lovely Drs, (friends) who have popped in and kept me company, buying me coffee and answering my questions when I haven't quite understood what I have been told.

I have had plenty of dark night moments and have been doing lots of thinking ( as you can imagine from me). Once I have sorted out my thinking I will write about it.

Thank you so much for all your messages, texts, emails, cards, thoughts and prayers. I now need to recover, particularly  after over 3 weeks of only fluids and very little moving. I  need to be careful not to get any more infections and I am beginning a new drug over the weekend. But I am one happy bunny to be home and to be thinking of Christmas.

Paul again: Anne is feeling better, and may be going home tomorrow as long as temperature remains down. She is enjoying having lots of visits from medical students to look at her hands, is very pleased with new toy (iPad), and managing to get lots of reading done (shame she didn't bring book club book with her). She says "Thank you" for all your cards and messages which really help.

Brief update from Paul. Anne is getting better, but it is still hard to take blood; the drip is finished, so she is glad to have 2 arms again. She is hoping for a stable day with a bit more eating and no more sickness, temperature is still going up and down so she is being ggiven more antibiotics. Lots of theories as to what caused this but probably  methotrexate poisoning and a rare infection.  Decision after Christmas about different drug for rheumatoid. Hoping to come home on Friday. Thank you for thoughts and prayers.

Chloe writting this morning. Tricky weekend for mum, lots of blood tests, antibiotics, fluids and antidote to the poisoning...all resulting in not much sleep and an exhausted mum!!

Monday morning, mum is starting to feel a bit better. Her mouth is a little less sore, so slowly starting to eat more. She has seen the consultant and has a plan (VERY pleased to have a plan!!). More tests today and continue to bombard the poisoning and infection with drugs. Hopeful for continuing improvement, and if so, maybe home on thursday.  Amazingly, with all this going on, mum's kidneys are holding steady. 

Mum loves getting texts and hearing all your news. Thank you for your thoughts and prayers.

Paul again. Anne is feeling a little bit better. She is still having tests, as they are not sure what's happening, and still having difficulty taking blood; but the registrar saw her at 5pm and managed to take some (the first time in 24h). Thank you to those who were praying specifically for this.

Anne is thankful for lovely kind staff; she has had her first mouthfuls of food after two weeks of fluid. She thanks everyone who is texting her, but says she may not reply as she can only text with difficulty using her left hand.

Anne now has her own beautiful christmas tree, thanks to the Conaghans. She is looking forward to strictly on TV. Please continue to pray.

Another update from Paul. Anne is a little better, still not eating, but had soup for tea which is a start. She has a drip and is being given blood. Bleeding has stopped and various theories are being proposed to explain it, but we may never know. Thank you for all the good wishes. We have worked out how to operate the TV in her room, so she can watch Strictly and other uplifting programmes.

A brief update from Paul. Anne had a bad night on Wednesday, so we went back to hospital yesterday and they admitted her. She cannot keep food or fluids down so is very weak. They have her on a drip which is helping a little, but she now is passing blood. On a positive note they have put her in a room by herself since they do not want her germs spreading. Will update later.

Visiting A&E

Unfortunately I had a very poorly weekend and by Monday was feeling really ill. Not eating at all for 8 days had really taken its toll and my mouth was so sore and I had constant d and v. I was very sleepy and we decided we needed some help. So at about 7.30pm we set off for A&E. I was very concerned for my kidneys and thankfully they were too! I was seen immediately and given a tiny room of my own. Bloods were taken and a drip set up. We saw a lovely young Jordanian DR who was very efficient and thorough.Its hard to give all my history in a short time when you are feeling very sleepy. After a couple of hours my bloods were back and showed that my kidneys amazingly were stable despite all that was going on but my platelets and liver function tests were not. After a discussion with a haematologist and the medic team it was decided that after having a litre of fluid I could go home as long as I kept my appointment with the rheumatologist at 8am the next morning. So we arrived back at 1am. 

The next morning we were the first patients to see the rheumatologist which was great. He apologised and said that he was very sorry for poisoning me! We laughed but he said - that I had the classic signs of methotreaxate poisoning! And that was why my bloods were all over the place. Thankfully there is an antidote which you take 4 times a day for 2 days and then you recover. I was very glad to hear that! 

So here I am in my cosy front room with buckets and towels, mouthwash and water - waiting for the recovery. I am very sleepy which maybe is a good thing as it gives my body time to rest. I am really looking forward to eating again - 10 days of water is quite disappointing. I am fantasising about all the things I will eat when I am better. Top of the list - pate on french bread!
I will have another blood test tomorrow and then see the Consultant on Friday when I am hoping to be a little better. I have an open invitation for a bed in hospital if I can't cope but I am hoping to avoid that. I love my comfy home and all my things. I also have my wonderful husband and son at my beck and call! I do feel that this is enough - especially for my poor family who really don' t need a really poorly mother/wife again they have played this game. So I intend to be better as quickly as possible.