Palpitations

New symptom for me, never had them before, don't want them again .... !  Gone now but that felt scary.....

I seem to be getting more symptoms, including new ones to me, post surgery than I did before surgery.....! Haven't felt well at all this week, and so, so tired! Yesterday I had a really low day where I just couldn't cope with even the slightest mishap, just kept bursting into tears all day.  Today isn't much better. Looking forward to hearing something positive from Fausto Palazzo tomorrow, I need to hear him say that he can help me where all others, including Dr Norman seemingly, have failed.  Sorry for the pity party folks, just feel at the end of my tether today .....

Jasmine x

I'm sorry you're having a tough time, can't offset any practical advice but you know that here is the place we can talk about how we feel and know that everyone will understand. xx

Hi Jasmine 
I'm so sorry you are having a really bad time, the palpitations are horrible and v scary but with your calcium being so high I'm not surprised. It's horrible feeling so unwell you can't cope with everyday life and it's unfair, you have been through too much already.
I shall be thinking of you tomorrow and sending you all my love best wishes and hugs. If anyone deserves a positive result from this it's you.
Keep you chin up.
Lots of love Amanda xxxx

Meggy and Amanda, thanks so much for your kind words and support, much appreciated.  

Especially as today has been particularly emotional for me and I've struggled to cope;  I have a 16 year old who starts his GCSEs next week, so already under a lot of pressure.  Before he went to school this morning I was explaining to him about my London appointment today and instructions for later as I wouldn't be home until around 8pm.  I then had a call from school to say they were sending him home as he was so distressed they didn't think he could get through the day.  Turns out, when he got to school it suddenly struck him that I might not get better and might die and he became very distressed and inconsolable.  He came home and we had a chat about things and he regained his composure and eventually went back to school.  After he left I went to pieces and felt heartbroken that it's not just my life that this wretched disease is wrecking, and I vowed there and then to fight this with everything I've got, even when I feel down and despairing of ever being well again, I will think of him and keep marching on!

Now, have to get ready for my trip to London to start the next phase of my fight back!

Jasmine x

Bless you both, Jasmine - so glad you were able to talk with him about it and that he felt able to go back to school. I'm so sorry to hear how distressed you both were  - but he's obviously a young lad who loves his mum tremendously and that is something to celebrate in this day and age.

You yourself are on the right track now, as well, Jasmine. I really feel that you are going to the right place today to get some answers. Don't dwell on the grey sides of today too much, just look forward, as you obviously are, to a pleasant journey, helpful people and getting it all sorted.

There are a whole lot of us here in the ethers madly cheering you on and waiting to hear all your positive news.

Much Love from Tigerlily xx

Jasmine this broke my heart hearing what you and your Son are going through.
It is so difficult to explain to them that you will eventually be ok when it is ongoing and they continue to see you suffering.
It shows what a close bond you have and like Tigerlilly said at least you could explain to him that you would be ok and it was just another appointment.
I wish the doctors would understand that it's not just us suffering all this crap.
Our families have to go through it too. I too have had a few conversations with both of my children when they have become worried that I'm still not better. It's very difficult and I don't want them to worry about me.
You keep fighting there is a cure for you and for all of us, it's just that some of us seem to have been taken the scenic route !!!!!!
Lots of love to you and your family Amanda xxxx

That's good, Amanda - going by the scenic route - I like that!!
Some of our expert medical travelling companions haven't been able to see the woods for the trees, either!!
Did you have a significant appointment today, too, btw?
Love Tigerlily xx

Oh, my goodness, how did I miss this thread yesterday?!!!

Jasmine, I am so very, very sorry to hear of all you are going through! First of all, you are NOT going to die!! You ARE going to be cured! Like Amanda said there, some of us just have to take the scenic route! Actually, I think at this point you have covered the scenic route several times now! It is time to reach your destination!!

I do hope your son is feeling better about it all now. I wish I could meet him to give him some encouragement too. I'm sure this has been rough on the entire family, but they will survive just as you will survive. Yes, this damned disease destroys so many good lives. It's only temporary though!! We will ALL get through it, and we will get through it TOGETHER! Hang in there, friend! Your time is coming!!

I am VERY anxious to hear about your appointment today!! I am praying with all my might that this will be the end of all of your suffering!

Audrey

Hi Tigerlilly
No I didn't have an appointment today, the only appt I've had is with Waitrose and the laptop.
I did ring Endo secretary again today and she was very annoyed that the Registrar hadn't rang me back. She said she had told her she would. Her words were " well she needs to pull her finger out and give you a ring". Well I think she b****y well does, so let's see if it happens.
I do hope Jasmine comes home with a positive outcome and her cure is just around the corner. No scenic rambles just straight there as the crow flies.
To be honest I think my doctors are doing some orienteering with out the aid of a compass or map and their satnavs gone wonky !!!!
Amanda xxxx

Nice one, Amanda!
Sorry I got confused - it's all the pressure of waiting to hear back from your registrar - it must be getting to me. At least the Endo Sec was upset on your behalf - great!

Yes, fingers crossed for Jaamine - OMG please!

Love Tigerlily xx