So much to learn !! - New to lupus

[Tekoamussard]

Hello my name is tekoa , I’m 28 years old .

I experience loosing two babies last year both around 12-16 weeks and had to be induced and deliver . Was very traumatic and turns out I have lupus .

Adapting and not being able to push my body through with normal activity has been tough. A lot of learning and a very humbling experience .

I have my PIP meeting face to face tomorrow but have been put on steroids and Hydroxchlorquine since submitting PIP form. I have remarkably improved outwardly with major swelling going down and now can’t sleep properly as opposed to sleeping ALL the time . It’s like I’m charged but still do get exhausted , but inwardly my kidneys are leaking a lot of protein and have to go in for kidney biopsy in the next two weeks.

Any advice on what to take to the meeting tomorrow or specifically what to highlight .?

And I have haemolytic anaemia which is what is causing my babies to pass away ... any one experienced this or have any positive experiences or tips for me 😊

Thank you, I will learn from you all

[whisperit]

Hello and welcome, Tekoa,

I'm afraid I can't help out with any specific suggestions, but I am truly sorry to hear you have had such sad losses.

I think my general advice for specialist appointments is to make sure that you ask whatever question is causing you most worry. Secondly, try to make sure you have a really clear understanding of what your treatment plan is - including who is your lead clinician, what timescales are being planned (for example, how long you should wait before seeing them again, how long before the next test should be done and so on).

Complex conditions like lupus need a lot of monitoring and understanding, and even those of us with excellent clinicians find that we have to take a great deal of responsibility for making sure things that should happen, *do* happen.

Hope you will find this forum a help, and that you will drop in regularly to share your thoughts and experiences

x

[Tekoamussard in reply to whisperit]

Thank you so much for what is sound advice .

Really had helped already!

Will defo keep sharing and reading and learning .

X

[happytulip]

I can't write much because of sore wrists but firstly welcome.

I'm sorry to hear that you have suffered so much loss on your journey to a lupus diagnosis.

With your PIP assessment tomorrow it is vital that you are as honest as possible. Don't try to make out that you can manage things when you can't. You need to answer their questions and explain how things are when you are at your very worst.

It is easy to try to put a "forward march" impression on however bad we feel physically because many people don't find it easy to ask for help or admit how rough they feel. But that won't help them assess you correctly.

Take care, good luck and I can day with 100% certainty that you will always find support on this wonderful forum.

[leslieliesel]

This makes me so sad..I am so sorry for your babies....and to also find out you have Lupus...