How can I help my daughter understand lupus?

[Stripes1967]

Hello Everyone,

I am a caregiver of my 29 year old daughter Tiffany with SLE Lupus and she has been living with this horrible disease for over 10 years. She had a stroke at age 16 then diagnosed with APS. She has every other thing that goes with it as well. The stroke came with some brain damage and she is kinda stuck in the age of 19. She is very depressed and has no friends to talk to ( because all are drug addicts wanting her pain meds) and I try to get her on web sites like this one to discuss and show her she is not alone. Is there a good way to approach her on this? She says she knows everything about lupus, but very independent (stubborn) and seams not to care when I mention it to her. Thank you for the help...

[ijeasike]

Hello

i can understand u. i am 29 too and my mum is my carer. It is a rough and tough illness to cope with it. It is depressing for a young girl of our age to be dependent on our mum. I feel sad that am unable take care of my mum. Do things my age mates do, jug, run even things as simple as taking a shower. But with ur support she will be fine. If u want to chat more my email [e-mail]. i can have a chat with her if she wants. I also know young girls in this group they are lovely even with all the pressures of lupus. Xx

ijeasike.

[Stripes1967 in reply to ijeasike]

Thank you for the reply Ijeasike. I am from the US and wondering how your treatment is over there. Our country sucks for the knowledge of Lupus and hard to even get a Reumatologist that will see within a few months. She goes to the Mayo Clinic in Jacksonville a few hours away, plus all of her Dx here. It just seams like Lupus is on the back burner of everything else. I am so Sorry that you are going through this and will pray for you. Your mum sounds like a wonderful loving caring person. I also wonder if you get tremors and shakes as well and what you do for that. Again Thank you!

[ijeasike in reply to Stripes1967]

I have sore fingers, bad back my knees are going to. I ve had seziures in the past. But i have blinding headaches but in general pain. I am lucky to have the best dr anyone can ask for. Nhs is good cos my health has made me unable to work so my meds are free. I have had series of chemotherapy a cocktail of meds. I just moved from london to bolton. I have appiintments every 2-4weeks and have access to reach my drs when things go bad. I had just seen my new rheumy and have an appointment in 6weeks which am abit worried about but my gp takes care of me and suggested that i go to a&e incase i run into trouble. my mum is great i can be very depressed and difficult to assist but she is still there 4 me. Be strong she will gain strenght 4rm u. Pray and things will get better.

xx and God bless

[santos2]

Hi

Thank you for sharing your daughter Tiffany troubles with Lupus with us. Like you I also I have a daughter called Tiffany! It's a beautiful name. However, I have been suffering from Lupus for at 9 years. Two years ago l had to move home to a shared accommodation because I was all mostly crippled. Since then I been diagnosed with Lupus and my Ramy it was very good. I did also dome some research and I found that what I eat also had a impact on my health. I found process foods are really bad for me. Curry, and cooking things with Ginger, turmeric and garlic it's great!

I have blueberries for breakfast every morning with honey and helps as they have their own antibiotics and are full of oxidens.

Cramburry juice also its good. Eat plant Vetables, especially broccoli and all green ones. I am still mostly times house bound retired and still working part time from home, as I can't get it out the house more the 3 times per week.

Tells your daughter to being positive and it's helps because she should be enjoying life. With a caring mum like you she's a very lucky girl.

I hope the above information it will help Tiffany a little.

Keep in touch

Mariax

[claradias]

Hi! is there any support groups near you that you could take her?

For my experience, its good to meet people that are experience SLE!

Stay positive!

love and light

c

[Stripes1967 in reply to claradias]

Hello Claradias,

I have been looking for the next group here in Orlando, but they are once a month in different counties here in Florida. The US has a long way to go on Lupus. When my daughter was diagnosed with Huges Syndrome 13 years ago, the Hospitals looked at you like you were alien. Then I had to explain to them what it was and APS. Crazy here I am sure the UK is more sympathetic about Huges APS and Lupus. Frustrated, but hopeful.

[claradias in reply to Stripes1967]

Hi Stripes! theres still a long way to go everywhere in the world. Here in UK is the same, even in London. My local GP always looks at me like im insane and try to pass it on, as soon as he can to my rheumy.

Im not sure if theres anything i can do to help. Is there anything that your daughter is interested in such as art, crafts, games?

This group is always here, remember you are not alone!

big hug!!

c

[LupusAdmin3 LUPUS UK]

Hi Stripes1967,

Welcome to the LUPUS UK community here on HealthUnlocked.

I think it's a fantastic idea to introduce your daughter to this forum as there are thousands of people in the community who are all very supportive.

Would your daughter like one of our information packs? Included within the pack is a copy of our 'News & Views' magazine which features stories form our members, the latest news on the community, and a list of contacts who live with lupus themselves who are available to talk to.

We have around 20 regional groups across the UK who have regular coffee and chat meetings which enables others with lupus to interact with one another in a intimate environment. If you would like me to send your daughter an information pack, just send me a quick private message or an email with her/your full name and address and i will arrange for one to be posted out. I will also let you know the details of your closest support group. [e-mail]

Obviously, please feel free to carry on using this forum as much as you need, or alternatively you can reach us on 01708 731 251 if you need anything at all.

Best wishes,

Hayley

LUPUS UK

[Stripes1967 in reply to LupusAdmin3]

Thank you Hayley, I have been with her all day going to Dx and therapy counsoling, but as soon as I mention a lupus support group she gets defensive and shuts me down. I know this would be the best thing for her. As a father it kills me that she will not take the time to look or talk to some people that are going through the same things as her. I live in Florida and getting info on caregiver support from Lupus foundation in the US. I am a full time worker and caregiver, but getting harder to do both. I don't want to wear her down on getting on a web site, she will just hate it more. Just need other ways to motivate her to do so. Thanks for your info tho..