Update

[Wolf1]

Hi. I’ve been home from St Thomas just over a week now. Started Mycophenolate when I came home. No side effects yet! I little nausea that’s all. But of course in three weeks time my dose will be tripled!! Ask me then re side effects. Im trying to come to terms with my shrinking lung disease, fibrosis as well as all the other lupus related problems. Felt I was cocooned in hospital- test after test. I just wanted to come home. But the reality of my breathlessness, chest pain, prognosis has hit me quite hard. I’ve been tearful, scared etc. Mycophenolate takes 8-12 weeks to work, so haven’t noticed any improvement yet. Seeing Prof Cruz in February. Xx

[whisperit]

It's a scary thing, no doubt about it. Hopefully, you will gradually feel more comfortable with handling the scares and see some real progress in the coming months. So far, so good! x

[Lupiknits]

Sending a hug x

[webar4780]

Ah Wolf,

Bless you, I've been thinking of you. Praying for you.

It's a very normal response. I was terrified, when my hiatus hernia diagnosis of 25 years!, was changed, to liver haemangiomas. My fear absolutely ruled my head for months. Consultant realised I was afraid, so sent me a letter of reassurance, no follow up unless symptomatic, well of course, I was symptomatic (perhaps over thinking it), for months! Lol.. being brave, on the face of it, I didn't report back...

Well, I tell you the above, because, a) please don't get as unwell as I did, mostly through fear, I added to my diagnosis, not in a good way. My immune system unsettled, (needed 4 lots antibiotics, back to back), and b), I had to train myself, to put it out of my mind, as best I can. I have since lived, in the day, one day at a time.. in reality, that's all any of us can do, we don't have ultimate control.. No one knows what futures hold..

One way, to look at this, you have a diagnosis, you are having treatment, you have a fantastic team, they care, and meds will be designed, to stop disease progressing, at the very least.

Also, when you have down days, know you are never, ever alone. HU open 24/7. At my darkest hours, I knew/know I can share, warts and all.... someone, will always respond...

Meanwhile, let the tears flow, as my Minister told me, every tear is seen, bottled, and part of healing.. we are allowed to get sad, desperate, overwhelmed... just not for too long..

Sending love, X

[Wolf1 in reply to webar4780]

Thank you huni. Really helped me. Xxx

[leslieliesel in reply to webar4780]

webar4780... Xx....

[leslieliesel]

Sending my Love Wolf1......So upsetting that you are going through all that you are...I hope your new medicine does the trick..and side effects...well, side effects..a horrible balancing act with strong medication....xx