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Wednesday, 12 July 2017

Relaxing holiday and a bombshell

DH received an email with an offer too good to miss. A few days at the coast with 70% off - of course we took advantage of it last week.

Hunstanton, one of our favourite places to enjoy some downtime in a lovely caravan.

The veranda overlooked two lovely ponds with mamma ducks and their babies where little rabbits also came out to play in the evenings. 

 


 
It was a relaxing holiday, no sight seeing this time of the area we know so well as I was not feeling the best yet again.
 
A teatime simple sandwich picnic at Brancaster beach, 7 miles along the Cromer Road (the main  coast road)
 

Sand as far as the eye can see both the left and right, popular with dog walkers


 
Local fishermen enjoy their sport and the residents are friendly too

 
Evening strolls along the long promenade that stretches all the way from Hunstanton famous cliffs at one end, right through to Heacham beach. 
 
 
The walkway stretches for about 3 miles, all concrete and the area has had a lottery grant for refurbishments that are at present being carried out. 
 
All the way along the sea washes in and out and the sun is setting over the sea. 
 
 
(taken on a different evening)
 
 
Old Hunstanton is another lovely sandy beach, the lifeboat station is here, open a lot of the time to the public to have a look round, a café opposite and the disused lighthouse that it now open for holidaymakers to rent.  Miles and miles of beautiful sand - perfect for children and on Friday there were 7 coach parties of school children enjoying some bucket and spade time - noisy fun, but it was lovely hear them - 1 coachload were from a local school to us at home!
 
 
I did some reading.   Shock of the Fall is not a book I could say I would recommend, but it was the book group latest read and having studied psychology I found it interesting.  The Domenica De Rosa, One Summer in Tuscany (she writes under the name of Elly Griffiths too, you may have read her detective stories) was very enjoyable - a writers course on the island of Tuscany in an old castle and what happens to those on the course and the family who live there. 
 
 
Time to open the meet up exchange when I got home as I had missed opening day on July 4th being away.
 
Gill (no blog) has made me the loveliest sunflower scissor keeper and matching fob and included some pretty scissors too.  Thank you Gill
 

 
I stitched for Justine, I too chose a scissor keeper and included some pretty scissors.
 


 
Arriving back home I have had two hospital appointments to attend, two different consultants to see and some unexpected news.  As regular readers will know, I have not been in the best of health for quite some time.  Lots of dr visits and medications to try to help but to no avail. 
 
The latest visit brought a diagnosis for me that we were not expecting.  A disease that we had never heard of before.  It is so rare the consultant tells me that there are only about 1000 in the world who have it.  It's serious, no literature available at our hospital as it's so rare and most consultants don't see a case of it in their career, so we were sent home to look it up on the internet.  There are times when you wish that the internet was not so accessible as the words you are reading on the screen are very scarey.  You open another link and read more doom. 
 
I have relapsing polychondritis (RP) - an auto immune disorder that attacks and eats away at the cartilages of the body - the body is held together with that.  No rhyme or reason where it will strike in the body, it can be life threatening if it attacks the heart, lungs or the windpipe area.  It's likely to be progressive over time and incapacitate and disfigure me (He thinks the nose has started this process already).  He feels that a lot of what I have had over the past many years could be attributed to it and as I have gotten older it has taken more of a hold.
 
Right now, well, we are a bit numb.  I'm taking very high dose of steroids to try and get this attack under control a bit and will be for a few weeks.  We see the consultant in 6 weeks time when he has had the chance to look through the latest round of tests that he ordered and I had on Monday.  He wants to also check back on some extensive MRI ad CT scans and other stuff I have had over the past years to see if he can see evidence there too.
 
Being positive, at least we know what we are dealing with now and the medical profession are involved to help as much as the underfunded NHS can do! 
 
If, in my resting periods these next weeks I drop by your blog and leave a note, it might not make any sense as the steroids take effect, but please know that it did to me when I wrote it......
 
Thanks for stopping by my blog and for your friendship and support in the past.  I felt i needed to share this news with you as we are not sure where this latest pathway will take us and what the future will hold and of course we are taught as children it's good to share.  I did smile when I thought that the disfigurement that might happen wont be seen by most of you, I can hide behind this screen as when you are reading my rambles you will still imagine the picture of me that you have always had in your mind ........
 
Love and blessings
 
Julie x
 

 

24 comments:

Marlene jones said...

I hope you can now get relief from the symptoms now they know what to treat. Our NHS is underfunded, but the staff are brilliant at making your treatment is right for you. Lovely holiday photos.

KC'sCourt! said...

Lovely holiday photos.

Oh poor you, but at least you know what it is, even if you didn't want to know........

Hugs

Julie xxxxxx

Jo said...

Oh Julie, I know this won't have been the outcome you were hoping for when searching for a diagnosis, but at least you now know what it is, and armed with the facts, you're better able to deal with it. I'm sure you're shell shocked at the moment, it's so hard to take in something like this, but I'm sure I can speak for us all when I say we're thinking of you. You need to take time out to take everything you've been told in, make notes of any questions that you think of so that you don't forget to ask them at your next appointment, and perhaps it would be helpful to find a support group, even if it's just online. That's one thing that the internet is good for. Your holiday photos are wonderful and they've now whetted my appetite for our holiday in Norfolk. I'm sure the rest will have done you good. Sending lots of hugs. xx

Ann at Beadlework. said...

Oh Julie, I'm so vexed to hear this news. I had hoped you would move forward in a positive way when you went back to hospital. Life can feel unreal when you are hit with this type of diagnosis and it takes a while for everything to sink in. Try not to set too much store with everything you read on the internet - I've learned that it can scare the life out of you each of the times my husband has been diagnosed with cancer. Every case is different and sometimes what you read sticks in your mind and can be very upsetting. The main thing is to stay positive and now that you know what you're dealing take each step at a time and try not to feel overwhelmed by it all. Sharing is a good thing - I'm a great believer in it - I think it helps a lot.
Take care.

Mii Stitch said...

It looks like you had a lovely quiet time away, those are the best!
Beautiful exchange goodies. Those scissors keepers look really pretty and will be coming in handy.
I am sorry to read about your health troubles. I just got over mine and can sympathise with you. It seems to take over everything. I advise you to read about the illness of course, but take some and leave some. Do not always believe what you read online. Everyone is different and react differently to treatments. I do hope your doctors come up with good pain relief so you don't suffer and can enjoy your Life. Hugs x

Vickie said...

Julie, first things first! Here is a SUPER HUG!!! Oh my friend. I am praying for you and will keep on. I read a bit about your disease to understand. I do hope you keep us updated. We most definitely care. I am so glad you got away for such a peaceful time of relaxation. What lovely scissor keeps for the exchange! They are both pretty. Take good care of yourself now Julie.♥

Sue said...

Lovely holiday photos Julie and two lovely exchange pieces. So sorry to read about your diagnosis, thinking about you with love and hugs xx

Carol said...

Oh, dear Julie, I can only imagine how upsetting it must have been to get the diagnosis of something so rare... You are the second blogging friend this week who has disclosed a serious health problem and I so wish there was something to do other than send hugs and prayers and all my positive thoughts your way. You truly do not know what lies around the corner...

I'm glad you were able to enjoy that lovely getaway with your dear husband and I do hope that your love of reading and crafting will help take your mind off your health issues, even if for a bit. Sending a huge hug your way, my friend!

Jo who can't think of a clever nickname said...

Oh Julie, what a shock for you. I suppose it is something interesting to have such a rare disorder but I am sure you'd rather be common and in full health.
I do hope that they can find a suitable treatment now they know what it is and how it may affect you.
You should definitely ask for holidays at Sunny Hunny on prescription. Relaxing there will be so good for you.
Lovely scissor fobs for the exchange.

Cheryl mylittlepieceofengland said...

Oh I'm so sorry to hear this Julie. As awful and rare as it is, at least you have a name to put to what's happening to your body and look for support. If I can offer you help in any way (even just a listening ear) then please contact me, lots of hugs xx

Cath said...

Thinking of you . sorry the news was not what you wanted to hear , but with a diagnosis comes understanding and help. Hopefully the steroids will work and you will start to feel better soon. Our doctors told hubby to read up on his diagnosis because they only had one other patient with the same illness so it wasn't worth them knowing all about it ! Luckily the nurse specialist at the hospital was brilliant and helped us loads.
If I can do anything , please let me know. Remember , you are a beautiful person, and no illness can change that .
Take care .xxx

butterfly said...

Hi Julie ,
I am so sorry for you , what a shock for you and your family.
I am so happy you had a lovely holiday .
Always have faith Julie , and they may find something to help hold it back.
We all know you are a lovely kind person , beautiful inside and out .
We will all support you , and love you.
Take care my lovely friend.

Maggie said...

Oh Julie, I'm so sorry to read about the news you had from the hospital, I can imagine how you are all in shock. Try to stay positive and know that we are all thinking of you and wishing you well and sending positive thoughts your way.
Norfolk look lovely, I've never been there, glad you had chance to get a relaxing break in.
Hugs xx

Justine said...

I'm so sorry to read of your health issues. Hopefully now you have a diagnosis it can be managed in the most effective way.
You are a beautiful lady inside and out and nothing will change that.
Looks like you had a lovely relaxing holiday. The place you stayed looks gorgeous.
Thank you again for my beautiful scissor keeper. Gill stitched a lovely one for you too.

Christine said...

Great holiday pictures Julie and lovely exchange gifts.
I hope that now that you finally have a diagnosis they can begin to treat your symptoms more effectively

gracie said...

So very sorry. I understand that diagnosis unexpected is so difficult. I will keep you in my thoughts.

stitchersanon said...

Julie, I have emailed you. You have been a wonderful friend to us all in the past, and now it is time for you to let us be wonderful friends to you. (((hugs)))

Penny said...

We never know what we are going to find out and it can be quite stunning. I'm so very sorry to read about your diagnosis, and you will most definitely be in my thoughts and prayers. Sending lots of hugs your way, too. It looks like you and your husband enjoyed some beautiful scenery. Take care.

Lesley said...

Your holiday destination is very picturesque Julie,lovely photos.
Thank goodness you had a relaxing holiday unaware of the news you recieved on your return.It is not news anyone wants,and the only thing I can say is you now know why you have been feeling so unwell.I guess it is a take it day by day scenario and I hope so much that this rare condition can at the very least be slowed right down.I shall keep you in my thoughts and your family too xx

Chris said...

I was shocked to read this Julie, but you have a very supportive husband and family so you will never be alone to face what ever might happen. And because you are a lovely person everyone in blog land will be thinking and praying for you, I shall pray each day for you. Cortisone has amazing results and often relieves the symptoms. Every blessing Chrisxxx

Annie said...

Hi Julie... I found your blog thru Carol of Stitching Dreams. I'm so sorry to hear of your health problems. I've recently had a diagnosis of a rare disease as well. I guess we both have whacked out DNA. Sending good thoughts.

Brigitte said...

Oh, dear Julie, of course this diagnosis was not what you expected to hear. But as the others here have already said, take one step at a time and don't give up. The doctors might find a treatment for your condition that can be helpful for you.

The place where you spent some holiday time looks wonderful. A place to relax and to enjoy nature at the seaside. Maybe you can soon be back there again for some days. Thanks for sharing the pictures.
A great exchange that you were joining. I love both scissor keeps, the one you received and the one you made for your exchange partner.

Sally said...

Oh Julie I am so sorry to hear about your diagnosis. The researchers seem to make discoveries all the time so don't lose hope although I am sure you won't anyway. Even though it wasn't what you wanted to hear at least you know what you are dealing with. Sending you lots of hugs.

Love the exchange pieces both sent and received.

Oh what a lovely break you had. Beautiful photos.

Linda Harris said...

Sorry to hear of your condition, while it's not brilliant news at least you now know why you have been feeling so poorly. Love and hugs being sent to you xxx