It has been awhile...

Wow it has been months since I last posted.

I just wanted to say that I am OK, up-and-down health-wise but still smiling.
God is so good and loving and helps me through the rollercoaster of life. If I did not have God in my life I feel I would be bitter and twisted about my MS. God enables me to look up to Him, and leaving my troubles/burdens at His feet is a mighty privilege.

I have been crafting and have posted a few things on my other blog:
Clare Cards

I will be posting more things I have made soon. I have lacked inspiration to create recently and my hands do not always do what the brain asks them to do so that makes crafting difficult at times.

I do love this time of year the colours are beautiful, what an AWESOME Creator we have.
I do love the short daylight hours as I can shut out the gloomy days and snuggle up in my favourite chair with some warm lighting and the dog!

I do love my family so much, they are so supportive, even on my grouchy days!
Most of all I love Jesus Christ and all that He has done for me, what a Saviour I have...

What do you love?

Kitchen Meme- feel free to join in

Kitchen meme

1. Do you have magnets on your fridge?

Yes, allmost of them are humorous..


2. Do you have a calendar in your kitchen, if so, what’s the theme of it?

Its a rat themed calender. Yes I said rats as they are wonderful pets!

3. What is your favorite kitchen gadget?

At the moment its mt slow cooker, what a wonderful invention!

4. Are you lucky enough to have a pantry of some kind?


No, I would love one as I lack storage space.

5.What is your favorite appliance?


My slow cooker, electric wok and coffee maker.

6. Do you have an eat in kitchen (table in it)?

No room in the kitchen. We have a table that has pull out sides in our lounge/diner

7. Do you have a bread box?

No.

8. Do you have a picture of your kids on the fridge?

One picture that has been made into a fridge magnet of my son swimming with dolphins.

9. Do you ever cook breakfast in your jammies?

I do not cook but nearly always make breakfast in my jammies.

10. Do you have a favorite cookbook that you use?

TO many to list , I just love cookbooks..

11. Are you lucky enough to have recipes that were passed down from your mom or grandma?

No, but my mum has shared many with me.

12. What’s your favorite food?

You have to pick a favourite! Yikes... Ermm chinese food.

13. What’s your favorite thing to cook?

Stir fry.

14. Is your coffee pot electric or stove top?

I love my coffee, I have an electric and a stove pot, infact I am enjoying some fresh coffee right now.

15. Do you ever make your own bread?

When we have guests I make bread rolls occasionally.

16. Name one thing that you have hanging on your wall in your kitchen:

A pale wooden clock.

17. Is there a clock in your kitchen?

Yes, I have clocks in every room.

18. Do you have a bowl of fruit sitting on your table or counter?

Yes I adore fruit and plums are in season at moment yummy!

19. What type of canisters do you have?

Only use two, one for rice and another for teabags.

20. Does your kitchen have a theme?

Pale and unintersting- Is that a theme?

21. What’s for supper tonight?
Sweet and sour chicken and vegetable Korma (we have a guest for tea so I like to do two dished :))

22. Do you have enough cabinet space?

Not at all, but I manage. I think what ever size I had I would want more lol..

23. Does your family use paper plates?

Only on picnics.

24. Do you have a good set of china?

I have a white set we got for our wedding, but its slowly shrinking and have added other white plates etc to keep the numbers up.


25. Do you wear an apron to work in your kitchen?

I have one but I dont. I always forget lol. Unless I have a baking day then I do.

26. Name one thing, if anything, that you would like to change about your kitchen.

Its very old and tired , so I would change it all.

I have giants in my garden.

Atlast my flowers are putting on a spectacular show, but a couple of giants are stealing the lime light,





They are as high as our bungalow roof.




A few borders, I have been tinkering with, and even when I became very ill last week, I STILL got so much joy from them. The giants make you look up to Heaven and I thank God for every creation.


Look what my wonderful husband built, the fountain is solar run. I just love the sound of running water. He palnted smalle heathers inbetween the smaller cobbles.

MS update and treatment.

I went to my neurologist today. He is a pleasure to see even if he is always running late, as he is so passionate about his work.
I am currently going throught a relapse and have lost strength and sensation in my right hand side.
I start a three day course of IV steroids on tuesday.
I tend to react well to them and it improves my health very quickly. All other courses of treatments are just too risky at moment as one of them is a mild chemotherapy drug which has a 1 in 100 chance of getting a blood disease in the furture. There are a lot of new medications that should be ready for public use very soon. So I am waiting for that to happen.

Weight loss update.....

Well I have had a testing week with health issues and to be honest I struggled to stay on plan, but I managed to loose 2 1/2 lbs this week. Totalling 10 1/2 lbs so far. This completely amazed me.

Better be focused this week as I don't think I would get away with it 2 weeks in a row.

Feeling out of sorts.

Oh well it had to happen. I have had a long run of of relatively good health.

I am loosing sensation in my right side. I am dragging my right foot a little and my right hand is so weak I can do only a few things with it.
And the exhaustion is so frustrating, I do something and then I am wiped out.

I see my neurologist next week anyway so I have not made and appointment for my new symptoms.

The Lord will sustain me no matter what. Thankyou Lord for being with me, even though I fail you so often you never fail me. What a Mighty God I have.

Weight loss update - 1/2 stone award.

I lost another 1 1/2 lbs this week and that totals 7 lbs (1/2 a stone).

Slowly but surely.

Sunshine .

Well the past few days have been hot hot hot! I cannot remember such warmth in the month of May.
We have fans in most rooms to keep air ciculating.
The pool is up and filled and Its just what is needed on a hot sunny day.

The flowers are growing like mad and the colours of some of the flowers have been a surprise to me as I thought I had planted purple ones and they are bright pink! Everywhere I am looking something new is peeking through.
Makes you marvel at Gods creation.



Mind you one of Gods not so little creations gave me a fright the other day. A spider the size of my hand came to visit me..Shudders! This is the little fellow after my husband caught him and took him outside.



I am still awaiting MRI results, I have an appointment with my neurologist mid June to discusss treament.

Weight loss update 2

Well I lost another 1 1/2 lbs this week so a total of 5 1/2 lbs loss so far.
It seems to go on so quickly and takes so much longer to come off lol!

Weight loss update

I lost 1 1/2 lbs this week and I was relieved as I have not been 100 % on plan. Now I must focus..

First week results on slimming plan

Well I have to admit I struggled to organise myself to get back on this plan, but I think I am getting there.

I lost 2 1/2 lbs :)
Long may the loss continue.

MRI

I am having an MRI on Monday morning, this will be looking to see if I fall under the criteria for Tysabri. I will not have the results for a while.

I have peace with it all as it is all in my mighty Lord's hands. He is in complete control of all things, so why should I be worrying?

Re- joined slimming world..

Well as I haven't mentioned my weight recently means that I have been steadily gaining not loosing over the past year or so. So today I joined slimming world to shed those pounds..My dear hubby isnt going to the class but will be on the eating plan with me.

I feel quite positive and determined to stick with it.
If I cannot exercise the weight off I sure can attack on the dietry front.

So watch this space....

Update on my husband- He has been to the lung clinic today and got showed how to wire himself up for an over night sleep study. So that should be interesting tonight, then he will go to the hospital and get an indication on the results. .

Course of treatment?

Two posts in a week is unheard of from me lol!

Just wanted to share what direction my treatment is going.
I went to see my neurologist on Friday and he agreed with me that my daily injections of capoxone (stopped now) were the cause of my breathing problems and site reactions. Seems I have most probably become hyper-sensitive to the drug.
So we discussed what direction and course of treament we should be looking into.

We are looking into a drug called

Tysabri (natalizumab)

Tysabri (also known as natalizumab) is a drug used to treat highly active forms of relapsing-remitting MS. It is proven to be effective at reducing relapses by approximately 65 per cent in people with the condition .

I will have a MRI scan in the next few weeks to see if I need it.

Here is a little bit of imformation about it.

Who is it for?
People with relapsing remitting MS. It is available on the NHS for people who have had two
or more disabling relapses in a year and have signs of new MS inflammation on a recent MRI
scan.
How is it administered?
Intravenously by infusion into the vein once a month
How does it work?
Natalizumab is an antibody that works by attaching itself to cells of the immune system and
preventing them from getting into the brain and spinal cord, where they normally cause
damage in MS.

The most common side-effects experienced after taking natalizumab are, joint pain, fever,
tiredness, a runny or blocked nose, sore throat, feeling nauseous, headache and dizziness.
In addition, skin reactions to the infusion are experienced.
One serious and often fatal side effect is a condition called progressive multifocal
leukoencephalopathy (PML). This is caused by a viral infection in the brain. The risk of
developing this is about one in 1000 for people who have received natalizumab for more than
12 months. The risk of PML with natalizumab use increases after 2 years of therapy. Patients
with MS should be informed about the risks of natalizumab, including PML, both before
treatment and again after 2 years. People taking natalizumab are monitored regularly to
identify PML and other potentially serious side effects as early as possible.

As of 10th March 2010 there have been 41 reported cases of PML of which 9 resulted in
death. However, the risks of developing PML remain at 1 in 1000.

I would value prayers at this time . As it would be a huge decision.

The sun is shining.

Just wanted to share how blessed I feel.

We at home are having a roller coaster ride of health issues but I am so at peace about it all. It is impossible to put into words how I feel. I have no worries or stress about any of it.
God has been so good to me and Us as a family.
We all at times can be so unthankful for Gods mercies towards us. We too quickly forget God is in control of all things. .
I am sitting here this morning reflecting on the past week and it has been so blessed and Gods love is so evident throughout.
I thankyou for the prayers and most importantly I thank God for loving a sinner such as I.

Quick update on my husband.

Jonathan went private in the end as its was a 2 month wait for a scan.( Thankyou parent in law xx who payed for it.)
He has been diagnosed with sleep apneoa and will have a scan in the future (on NHS) to double check on things.The scan is not urgent hence going back to NHS.
Futher tests will be done and I will keep you updated.

This and that.

I haven't felt inspired much to write anything here for a while. Lots has been going on but didnt really know where to start. So here is a brief summary:

Me - I haven't been to well but I have been plodding along steadily until I kept experiencing breathing problems. The best way to describe it is its like having a panic attack and I could not control my breathing. I went back and forth from my GP and had all sorts of scans and tests and all seemed ok, but the breathing problem just got worse.

I then went to a breathing clinic and was informed I have hyperventilating syndrome and I am expelling far too much CO2 when has a knock-on effect like alkaline blood, kidneys working overtime etc.

I now have diaphragm breathing techniques to master.

Also, one of my medications which I inject daily can make breathing difficult side-effect and my injection zones were becoming too painful, so I am no longer taking that. Which I am quite pleased about!

I will see my neurologist in April and discuss alternatives then. The Lord continues to keep and sustain me - what a wonderful God I have!

My dear husband has not been well at all recently and it all turned for the worse last Thursday. I was close to calling an ambulance out. We went to doctors as an emergency on Friday, he has been told not to drive until further notice and is going to have a MRI on his brain to check for temporal lobe epilespy. But the wating time is months so our family are paying for it to be done privately to help speed the diagnosis along.

We would really value your prayers for us as a family at this time.

Throughout all of this we remember God is in control of all these things and we must trust him more and more as He will never leave nor forsake us.

A hymn that I would love to share.

Well its 2010 and oh how last year just shot by.

I would like to share a hymn that I love dearly . Please go here for the words.

The words are wonderful.