New to this

[MaryBeth]

I am a 40 yo woman. My mom is 64 yo and has Systemic Lupus and was diagnosed 4 years ago...She went to the hospital and had a pulmonary embolism....She has had Lupus for many many years but didnt want to admit to it

Now as time goes by she is getting sicker and sicker. My family (dad, two brothers and a sister) are a very close family and care about her dearly. I have two daughters ages 20 and 6. They are so close to their grandmother and this is affecting them too.

I just want to know if any other women are out there that are in the same situation. My mom is in and out of the hospital alot and right now she is in with Pneumonia. I wanted to know how other people are dealing with their parent having this disease.. It had taken a toll on all of us....I am very close to my mom and I want to know what others do to help thier parent through this horrible disease.

Thanks for any advice you can give me or any support. I never reach out like this but I really need some supprt and help.

Thanks
MaryBeth

[raggedyann1]

Marybeth,

I think you are an awesome daughter to spend time trying to learn about this crazy disease. There are no perfect answers with lupus. I have lupus not my mom but wanted you to know that your post is being read. We have very few members who are not the lupus patient.

I would make sure your mother is receiving top notch treatment. Part of that will depend on which country you live in. I am in the united states and I can tell you from my standpoint that you need to be in a major city to get a top lupus rheumatologist. Those rheumatologists have links to top cardiac, pulminary and kidney doctors who understand how to treat the disease.

I am NOT saying your mother is receiving poor care but that sometimes a trip to a major city for a consultation may yield other treatments not currently being used.

Feel free to come here and ask any questions you have.

Take care,
Karen

[Anisah]

Dear (((Mary Beth))),

I'm glad you found this forum and are reaching out. Karen gave some great advice. I'm in Canada and its not much different here. The best doctors are affiliated with teaching universities, universities with medical schools.

Lupus can change from life threatening to remission-like so please don't give up. It sounds like your mother has been suffering a lot, I'm sorry. God willing she will have better days soon. Pneomonia can take a long time to heal. :(

There are many good medications available to treat Lupus these days. She shouldn't need to suffer too much with the right medications. I hope she has a good Rheumatologist.

I wish there was more I could say. We're here for you though,
take care,
Anisah
:flowers:

[Tom]

Marybeth, :flowers:

I hope you don't mind a mans response here.

I would just like to say that this disease is hard to cope with on both ends. Just spending time with your mother means more to her than you know. We live emotional rollercoaster rides from day to day and when we have a good day, it's wonderful. This can be a lonley disease because depression plays a big part, and bad days can be very tough sometimes. It's so aggrivating not to be able to do normal things like we used to, and time spent in hospitals are the hardest.

Trying to keep as much of a normal life as possible is all we can do. Family and friends make this much easier by just showing they care. We don't have much control of what happens next, but we fight this every day. Just knowing someone is there makes a lot of difference for us.

Take care and ask any questions you like, we do. :)

Please let your mom know that we are here if she needs to talk to others that know what she is going through.

[helloos]

Hi marybeth. Just being there and helping with medicines, doctors and treatments and sharing a smile and some laughs are the best someone can do.

I think you are doing just fine.

Paula