IT’S BEEN A WHILE

I know I promised a blog “soon” to some of you asking where I was but so sorry, things have been pretty hectic around here.  The last few months seem to  have been spent running backwards and forwards either to my hospital in Sheffield  or Calderdale Royal or Huddersfield Acre Mills. To be honest we have had a nightmare time trying to get to the bottom of my “complex issues” as one specialist said and though not quite there at least we are some way to getting answers.  One thing has been confirmed is that I have severe carpal tunnel syndrome in both wrists, eventually I will be sent to have one of them done with hopefully the second one further down the line.  Brain issues have been ruled out after an MRI which is a plus but though my back is really bad he won’t operate cos of the pah and the dangers that may occur.  I am waiting now to see the ‘rheumatologist to either rule in or rule out rheumatoid arthritis or scleroderma.  Oh what fun we have.  We know the appointment will not come through in the next few weeks so we are taking the opportunity to travel to Spain, Javea via ferry and drive down.  So many hoops to jump through.   

Typically when i really needed my cleaner to arrive so we could have a good talk about what I needed her to do over the next few weeks she sadly got a migraine so I have written huge lists for her to follow.  She does take good care of our place and enjoys sleeping here so that is a comfort.

I badly needed a pain killer I was given when I had my hickman line fitted so I wrote a nice note to the doctor asking for it explaining that I had just been in touch with Sheffield and they approved it.  Of course the girl on the desk refused to give it to the doctor and told me I could have an appointment for one to ring  me in two weeks time!!!!  I was livid as I was in so much pain. I told her to forget it I would go to Sheffield and ask them if they would hand me the prescription  as they had approved it.  Sure enough they came up trumps and I now have better pain relief, not the best but as I cannot take anything with opiates in it is a tough call for the doctors when t comes to pain relief it is the best I can hope for.    

WILL I EVER TRIAL AGAIN

With all of the above it did make me wonder if I would ever be allowed on a new trial.  I was going to begin one this month but so far it has not come my way.  Though i continue with studies I must admit to liking trialling new drugs to see if they would be of benefit to those of us suffering with pah.  I shall have to sit and see and continue to hope that I can.  I know I owe my life to those that trialled before I received this god awful illness and I am so thankful  but I did love sort of paying back if you know what I mean.  if I cannot at least I gave ten years to trialling them so it will give me some comfort.  

THE WEDDING AT LAST

I was so looking forward to this wedding which was held at the prestigious Holdsworth House and i must say it did not disappoint.  Both Chris and Danelle put so much work into it, the venue the outfits, the favours etc were beyond anything I could have imagined  I was so proud of Danelle and Izzy who looked so stunning.  Chris looked a picture too in his wedding suit as did Harry,, our handsome grandson who looks just like his dad.  At this wedding every single aspect had been organised down to the last detail.  The food was excellent from the canapés brought around while we were drinking before the meal to the wedding breakfast itself.   

My word the room we ate in was truly magnificent, Danielle wanted it to be filled with flowers and filed it was.  White roses and a few pale pink ones adorned every space.  The smell was fabulous.  But I digress.

Before the actual wedding we were in rooms that were used to do hair and make up etc.  This was a lovely place to natter and catch up with those we had not seen in a while.  The photographers were taking a great deal of pictures but oddly enough it did not feel at all invasive.  The atmosphere was lovely but as time went by I could see Danielle getting a little nervous. Izzy too seemed to be a bit worried about walking down the aisle.  Once the ceremony started however it seemed all nerves went and they spoke their vows very clearly and precisely. I was so proud of all that played their part.  Danielle had a wonderful friend Abi keeping her calm and Chris had his best friend Jamie so that quelled their nerves.   

Plenty of pictures were taken both in and out of the venue and outside they had drones flying and taking pics too.  We can’t wait for the  pictures to arrive. At the dinner table there were  tiny almost hidden microphones in the vases of flowers close to where five of us made our speeches.  There were wedding favours for every guest in the shape of a beautiful box tied up with white ribbon.  On opening them we were all given 15 years old single malt for the men along with the stones that you put in the freezer and then when cold drop into the whisky to cool the drink but it does not get tainted with water or any other liquid.  This would be a sin in Chris” eyes.  Along with this were hand made chocolates too in a beautiful box.  The ladies instead of whisky were given a particular gin that my daughter likes with a small mixer and again the chocolates. 

 

Quite a few of us received huge bunches of flowers, amazing and Colin received a delightful gift of not one but two paintings of two people walking along with backpacks on enjoying the mountain scenery.  ( perfect) .  Izzy and Harry received gifts of inscribed jewellery as a thank you for their part in this wedding.  Harry was the ring bearer and Izzy was matron of honour.  

Sadly after the meal I had to go to bed and was fearful I would never to return but I did manage to!  I arrived just as Danielle and Chris were taking their first dance so how pleased I was that I made it.  Though not doing much except for sitting I did manage to stay most of the evening so I was so pleased I dd.  It was wonderful to meet with our now bonded family and thermosphere was so good and loving and yes lively.

My speech went well I think.  Even one of the photographers came over to me to tell me how good it was.  Many told me how very beautiful my daughter looked and though biassed I had to agree.  She looked amazing, we were so proud of them both.  

So the deed is done  My daughter is now Mrs Williams and it was announced at the wedding that Izzy too had now taken this name, we were so very pleased.  

We are fortunate too in that we genuinely like and respect all Chris’ family so look forward to seeing them at more and more family occasions.  

Right well my hands say enough typing and get back to wearing my splints.  

I pray you are all still safe and stay that way.

Warm love to you all.

Carole