Hi my name is "STANDING STRONG"

I am a mom with three girls, the youngest is 25, the oldest is 29, and the middle is 27. I was diagnosed with lupus 5 years ago and still have problems coming to terms with it still sometimes. My oldest has cerebral palsey and caring for her with lupus is hard some times, because my patients is not what they used to be with her and my energy level is definitely not the same. My husband has the weight of all this on his shoulders and I see it and can do nothing to help, he is wonderful, her never complains. I thank God for him everyday.

hi standing strong, you are blessed to have him in your life :)

What a great husband. I was diagnosed this year, but I had an "unofficial" diagnosis two years ago. I still have days where it's hard to accept I have lupus and work with it.

i understand where you are coming through when i was 19 i was diagnosed with antiphosphilipid syndrome but went on to have 2 children one girl one boy everything was great until my daughter turned 3 years old started having kidney problems i went to numerous app with her and eventually she was ok then i went through the same thing with my son but his was alot worse the docs couldnt understand how this could be as i was telling them i was ok as i hadnt been diagnosed with nothing more my daughter was diagnosed with fibromyalgia and me at the age of 11 and my son was diagnosed with kidney disease and bipolar at 16 so i was their sole carer i did everything as the father ran from us he couldnt handle it so i looked after both children i met someone else when i was 34 he was great with children i told him everything he took them on as they were his own then we got married and wanted to extend our family but unfortunatly did not happen i kept having miscarriges so was sent to see specialist where i was then diagnosed with ms lupus rheumotoid arthritis hypothyroidism para thyroidism raynoids sjourns disease sorry my spelling is getting worse so is my vision ive been told im dying my organs are dying but my husband has been fantastic im so lucky to have him we all are he doesnt moan or complain hes my soul mate and i love him dearly my children love him to but i do know what you mean about flying of the handle i do as i want to do something but im in so much pain i cant but we have to know our limits and stick by them so we can still enjoy life as much as we can dont be to hard on yourself your doing a remarkable job with your daughter she will know your not well so be kind to yourself you will be fine take care xx

I understand how you feel! My daughter suffers from Ehlers-Danlos and depression. We had to move her back home from college due to failing health and worsening depression. She was beginning to cut herself. I was just diagnosed with lupus months before this, so I was having to force myself to keep going. My husband, like yours, took care of all the major things without any complaints. Recently, my daughter had to have knee surgery due to the Ehlers Danlos. Hubby took off work a few days to take care of her so I could rest up and take care of her when she wasn't as needy. You and I are truly blessed. Take care of yourself so you can take care of your daughter.


yes we are truly blessed my husband took his redundancy to be my carer as i just couldnt cope on my own my daughter was also diagnosed with chronic depression and its took its toll on her its so hard but im grateful to still be here to help them get on track my son is in london and we are going to see his fashion show on friday im so looking forward to it hes worked so hard but he got there he passes out in july so thats another great day to come im so sorry to hear your daughter is struggling but ive been there with mine and they have come through other side so you will to in time just keep telling her you love her and plenty of cuddles she will be ok good luck with it all if i can help you in any way let me know im here for you take care xx

Hello fighter,

Sorry to her your eldest as cerebral palsey and it's alot of strain on both your health besides your hubbies shoulder but to do what your doing i have "Great admiration for you" but i just hope your able to take small amounts of time to relax for your health also.

Sounds like you have a golden hubby there like myself...i don't have children but the burden of extra things he's been a god send.


All my love Terri xxx

I don’t know if anyone ever FULLY comes to terms with it so you are not alone. Glad to hear you have a good strong support system at home…very important!!!

Queenie...i quite agree with you regarding (Glad to hear you have a good strong support system at home....very important!!!)...nicely put :)

Queenie said:

I don't know if anyone ever FULLY comes to terms with it so you are not alone. Glad to hear you have a good strong support system at home....very important!!!

Hi standing strong,I have an amazing husband as well,I met him 20yrs ago when he talked me through CPR over the phone when my father died,He came to my work to tell me how sorry he was about my dad and the rest is history,He married me with 3 small children and raised them like they are his own,He never had children of his own and I was unable to have a child for him,He said that’s fine,your children are feeling enough for me…I had lupus 3 kids,no child support and and xhusband that stalked me…I tried to scare him off,I said you do not want to date a women with all my baggage…He is my everything!!!our kids are now 26,28 and 29,And we have 3 grandchildren…He makes life so much better with lupus…celeste