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Sunday, March 30, 2014

Time spent with my Children

It is when I have recently come home from hospital and I am feeling at my best for a while that I get to spend the most time with my children. They bring me so much joy and I am at my happiest when I am able to work with them or do new things with them that I may not have been able to do in a while.

It doesn't matter how much I may enjoy being with them, grooming them, working them and riding them, there is no way I can adequately describe what it feels like not to have the energy or the inclination to be around them when I am not well.  Trying to saddle up a horse correctly takes so much energy that I am then too tired to even have a leg up to get on and take a ride.  So while I can and am able I use the opportunity to my advantage.

Today I managed to spend time with Switch who is still carrying a lot of pregnancy weight.  She was very good and let me do so much with her.  I measured her to see how much she weighs now...she is 380 kg and she is our tallest horse at 15 hands.  I managed to put the halter on her, and then the numnah and saddle too.  She looks so fat and yet the area that the saddle is strapped around her with the girth is quite small.  I used Zorro's saddle today and I was able to tighten it a lot smaller on her than on him.  All the while she just stood obediently and let me work with her.  To hoist myself on top of her I needed to use a step,well not a step, but an old car tyre, but she didn't mind.  To sit on her was the best feeling I have had in a while.  I felt so tall and all the while she just kept her stance.  We walked a bit around the ring but not a lot.  It is the first time since she has been with us that I have done this as we first had to let her get used to us and then with her being pregnant we decided to rather earn her trust than work her.




After lunch I spent time with Angel, my dad's horse. I didn't use a saddle as I was too lazy to go and fetch it. I just sat on a numnah.  She too was very good and I had a nice little trot with her around the ring.  She has picked up quite a bit of weight over summer with too much delicious grazing to eat so she really needs us to ride her more often.







I am going to try my best to be with the horses every day this week...it doesn't just help them but it helps me too.  How lucky am I!!!!

Thursday, March 27, 2014

Home

At last I am home again with all that is familiar around me.

To finally make that bend in the road and turn up our driveway gives me an exciting feeling of expectancy.

We arrived home late yesterday afternoon and to first have Barney, my dog jumping up and down with excitement and then walk up to see Zorro and August waiting for their afternoon snack, made me realise just how much I miss being home.
When in hospital it is nice to have friends with me who can relate to me and all I go through on a daily basis, as well as having totally awesome staff who go above and beyond their duties for us...just because they can and care, but I do miss home.

I am disappointed that this stay didn't produce the 'oomph' that I was hoping for but at least I'm not worse than when I went in.

My PEG was looked at and it was decided to leave it as is and not fit a new one. The doctor said to me that for it having been in for almost 2 years it is in really good condition still so there was no need to replace it.  She gave me some good tips on keeping it in good working order so I am grateful for all her advise.

My sugar readings were absolutely fine with the feeds the hospital dietitians gave me so their was no reason to start me on insulin. To be honest I am glad as I don't really want CFRD to develop at this stage of my life.  I will continue to do random testing though as I know it is important at my age to keep an eye on things.
The dreaded lung function test on release is 33%...still good compared to what it was.  Sadly I only picked up 400g, which means my weight is now 54.8kg...also better than before but not moving up quickly enough.







Today I cleaned up in my flat, a job that does not hold any enthusiasm for me but it had to be done. Even with it being closed up and no one using it, the dust bkew in under the doors and made everything dirty.
So with suitcases unpacked and clothes away, for once, I am ready for tomorrow and looking forward to our holiday next month.








Tuesday, March 25, 2014

Two Weeks

Hey there all you friendies, family and fans :-)

Well guess what? Two weeks is up and this morning I woke up feeling 'meh'. I can't believe that at the time I should be packing my bags and going home, I feel this way. It took a whole week of treatment before I started to feel any improvement and now this.  My doctor said they will see how I am feeling on Wednesday and then decide if they are going to release me or not.

Maybe it's a good thing as my PEG hasn't been sorted out yet either. I and my doctor have been trying to have it looked at and replaced and only today did she get hold of anyone who had anything positive to say. Wednesday it will be looked at and measured - just in case I need a different size. It will then take anything from a week to 3 months I believe. A big time frame but I guess if there isn't one available in my size then it will have to be ordered.

Strangely my sugars have been fine here in hospital. The feed I have here is different to the one I am given to use at home so maybe it is that particular product. When I am back home we will test it and see what happens.

So hey, this is how the last two weeks have been for me...some highlights and some lowlights just making life fabulous so I can keep on fighting.

Here are A few pictures of my stay with all my Best Friends :-D

Michael, Juan, Andriesa, Ndu and Louis <3












Friday, March 14, 2014

Good News

Well I have just sent out my update in a newsletter and for those who don't know yet, I am in hospital at the moment.
I have started on my IV anti biotics now after going through the de-sensitizing process again.
I had a lung function test on Monday, my first day after being admitted on Sunday evening. I was so surprized after feeling so tired all the time to hear that my FEV1 is sitting at 32%, which is a slight increase on last month. I must have had a good rest the night before and had a good burst into the machine to produce such a good reading.



( My x-ray )



More good news is that yesterday I had a sonar to check my liver and the results came back with a reading of 3 on the Westaby scale. My liver has after about 5 years of being on medication, healed. It is smooth and re-generated with no more cirrhosis. Good news indeed and I no longer need to take the medication I have been taking.
Together in the ward with me this time are Juan and Louis - old friends, as well as two younger CF's, Andriesa and Michael, as well as Ndumiso who joined us yesterday.

It is good to see new faces and make friends with other CF's.

Hopefully the rest of my two weeks here will go as smoothly as these first few days. I will keep you posted.