how can i help my 24 year old who got sle lupus she cant get herself motorvated she weak all the time

[pepsie]

just dont no what i can do to help my daughter get better at the minute she has lupus in the brain and she got to have tranfussions and some times the cant do it cos the cant get the needles in and im so so worried if she dont get this treatment that im going to lose her i just dont now what to do and how to cope with this cos she so young

[RhondaB]

I'm so sorry to hear this and will be praying for you both. I understand the havoc it causes. I has SLE also and and an aneurysm before I found out I had Lupus. Its hard because I struggle with fatigue my self which makes me less motivated. I take 50,0000 of Vit b. I also get the shot. All kinds of things but nothing seems to help. I know they say to make sure you eat, which brings energy but half the time I dont have the energy to get up and get something to eat. I'm in the United State (Dayton, Ohio) if i come across something that works I will be sure to pass it on. Sending you both HUG's, KISS'S & LOTS OF SPOONS. Blessings

[pepsie in reply to RhondaB]

aww thank you rhondab she also has ipp something to do with the blood aswell she goes for her blood tranfussion and theycant get the neddles into her vain so she cant her treatment and im soworried its goingto spred through her body thank you xxxxx

[roobarb]

Hi pepsie

Your daughter is poorly, so don't worry about getting her motivated. I'm sure things will improve once she's had the treatment. It must be so frustrating for you to have to watch her go through this without being able to help. But rest assured that the doctors will look after her, & will find a way for her to get the treatment she needs.

When she is ready, maybe she will feel like getting in touch with one of the young contacts at Lupus UK, so she can speak to someone her own age who understands what she is going through. Thank fully there are wonderful sites like this to get information & support at such a difficult time.

My thoughts are with you both. All the very best. X

[pepsie in reply to roobarb]

aww thank you rooobarb she also has ipp something to do with the blood aswell she goes for her blood tranfussion and theycant get the neddles into her vain so she cant her treatment and im soworried its goingto spred through her body thank you xxxxx

[roobarb in reply to pepsie]

Do you mean itp? I know someone with this, so have been reading a bit about it lately. There is lupus in her family, but she's tested negative so far. She is currently having platelet transfusions for the itp, & they struggle with the needles too. It must be awful for you both to go through this.

Did you know that there is an itp site on health unlocked? Your daughter might find someone to chat to there, who is going through the same thing. It most commonly occurs on woman in their early 20's unfortunately. But it might help her to know that she is not alone.

Lots of love. X

[largesse]

Hi Pepsie

I understand your worries, my daughter was diagnosed just over a year ago she is 21 now.

As roobarb said once she feels better she will be more motivated. My girl had counselling which was motivational. Although she now still gets aches and pains and fatigue, she leads a fairly normal life and has held down a full time job for the past 7 months.

All the best to you and your daughter. xx

[pepsie]

aww thank you largesse she also has ipp something to do with the blood aswell she goes for her blood tranfussion and theycant get the neddles into her vain so she cant her treatment and im soworried its goingto spred through her body thank you xxxxx