My mother and I

Hello! My name is Aurora. I am on this site for my mom and myself.

I have had many health complications in the past, and now only have occasional symptoms that I can manage.

I have had/am managing Ramsey Hunt Syndrome and full body Zoster Shingles (now only occasional outbreaks) full-body CRPS (complex regional pain syndrome - the painful kind, not the kind that makes it hard to move), night seizures and a few grand mal seizures (not anymore, thankfully.) I have been under many kinds of medicines - it would take to long to list them here. Everything from things heavier than morphine to methadone and lyrica, and many seizure medications. I've also had a couple procedures done like spinal taps, and had different types of physical therapy.

My mother developed Lupus from an adverse reaction to a vaccine (A one-in-a-million thing) A tetanus booster shot that they had her take because 'your daughter's immune system is weak so you have to get immunized.' She likely had an adverse reaction because of the extreme stress she was under, genetics and a weakened immune system from staying by my side at hospitals 24/7 . That was in about 2010. She has been in and out of the hospital for years now. She has had kidney stones multiple times from so much medication. She also developed dystonic storms unless she takes her medication every 3 hours (she can now let it wait up to 4 hours.) She is in constant pain without medication (even with it, really). She has Fybromyaligia in her hands, especially in her left one - the arm of the injection. She developed meningitis at one point really badly, but doctors blamed the symptoms at first on medications. She fell into a week and a half long coma, but has since recovered. She experiences soreness, rashes and various side-effects of medications. She hasn't been to a hospital for around 6 months.

So my hope on this website is to a) find non-medication solutions to help her (exercise, diet, lotions, etc) and ways to help her with her depression she has developed, understandably. Is there any way I can encourage her to try to go outside more? Her main interactions with people are between my and my siblings, and she used to be a huge extrovert. She still acts like nothing is wrong and she is constantly fighting to do more of her art... But I can tell.

HealthUnlocked redirected me to this page to do an introduction for some reason. We live in the US, so I will likely do an intro on a US page as well.

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  • I posted in the wrong place at first but - the reason I'm in the Lupus part of the site is because my mother has it. I'd like to learn more to help with her symptoms.

  • Wow DizzyDawn, I have to say that I have never heard of Ramsey Hunt syndrome so will look at that.

    I would suggest you change the title of your post to include lupus and your mother. There are very many people on this site who have many years of experience. I hope the new title will get more replies as we all help each other on this site.

    You can also get information from the lupus.org website which has information you can download and print to show your mother.

    I would also suggest you give more information about your mothers condition as when she was diagnosed, what medication and symptoms that she experiences.

    I only have mild SLE and now Fybromyaligia and not have enough experience to help you. But others will.

    Take care both of you and best of luck.

    Nx😎

  • I updated it. I wasn't able to before because my sister was using the computer for her job. I don't think there is any information of Lupus I can get her that she hasn't already memorized, other than first-hand accounts. Thank you :)

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