I've never done something like this before but I'm basically trying to prove a point to my mum! My mum is 46 and has Lupus, quite severely and whilst we (her family) give her a lot of support and advice, personally I feel this only carries a certain amount of weight with her because we don't feel what she feels. This is why I am here, I want to introduce her to people who experience the same troubles and can offer her some extra support that we can't. She's not great with the internet so I'm helping her.
My mum has had some bad joint problems which her current treatment has cleared up but she has bad kidney damage and her Lupus flare has caused inflammation around her lungs so she finds it difficult to breathe deeply, cough, sneeze etc. I find mostly she seems to struggle emotionally with it because as im sure you're all aware, when you experience a flare it can be very much a case of one element after another! I hope to find some good friends for her to chat to and relate to!
I look forward to hearing from you!
Hi and welcome to WHL! I am so glad that you are both here. Although Lupus does affect the entire family and family support is so very important, no one can really understand it unless they live through it.
I am going to make my first comment about something at the bottom of your post. The depression. Many people with Lupus suffer from depression and yes, it can be from all the stress but it can also be from what the disease does to us. Since no part of our body is immune from what this disease can do that does include the part of our brain that controls moods. For some people, myself included, my antidepressant is as much a part of my lupus meds as are the other medications that I take. Sometimes it is easier to accept when you know that there is nothing you can do about it.
It is also important that she gets help with the inflammation that is causing the lung issues. Lupus, in most cases, can be controlled with medicines to control the inflammation but if left unchecked it can be deadly. I hope your mom will use this site for support because there are some wonderful people here and we have all been where she is.
Success is not final, failure is not fatal: it is the courage to continue that counts.
Hi Abigail - and mom,
Welcome! Mom you are not alone, and you are so fortunate to have a supportive family. Many here do not.
There are plenty of wonderful people here who understand what you are going through. Sometimes it's just nice to have someone to vent to. I am sure that you could also help some of the members who are looking for people with more experience with certain symptoms.
I hope you can find lots of helpful advice here. I know I do.
Abigail -there is also a section for family members, as you and your family are also going through a difficult time.
Hi Abigail, and welcome to you and your mother. I do not have a diagnosis as of yet, but I have received so much comfort and help from the good folks who belong to this family. I know, just as I have, you will both be blessed by the help and hope you will find.
hi abigail and mum.
may i ask where you are from?
we have members from all over the world.
there might be some near you or mum.
as tgal has stated, depression and inflamation are two big issues with many of us.
sometimes the depression is not always someone feeling low.
i have my lupus effecting my blood.
therefore everything that relies on bloodflow, is susseptable to my lupus.
i use depression medication to help balance me, mentally.
i am a very happy person, but need the medication still.
i am very happy to try to get to know mum.
please have her leave messages or posts for me.
Hi Abigail & mum! Welcome both, and it's great you're helping her out. Next thing you know, from watching you, she'll be surfin' all by herself, listening to some Beach Boys tunes as she zooms around... tic
"There but for the grace of God, go I."
"... His mercy endureth for ever."
hello abigail and hello mum welcome to whl famly i am 47 and have lupus. i am from sydney australia we are here to be your support as much as you need .