Need Advice

relax and stay away from negative people, your husband doesn't realize how serious this is and im sorry, make sure you eat right and excise daily and walk atleast 1 mile a day too increase your living

I am so sorry you are dealing with all of this, .

First of all, I could rage for hours on the medical gaslighting you and your daughter were subjected to and the fact that she was basically 'punished' for wanting to pursue her education, sheesh. I can't use bad words here because, well, that's pretty unprofessional for a moderator, but just know I would be posting them here, if I could.

If you haven't done so already, I would definitely file an appeal about the Medicaid situation. That's ridiculous.

As for you, I would implore you to try to find some support. Sites like this one can be a good start, but you really need some kind of outlet to protect your mental health. I know you may never have the full support system you need, but you should have something. I mean, in a storm, a life preserver isn't as good as a Coast Guard rescue boat, but it helps. The Lupus Foundation of America has some great resources you can access right from your home, so please consider checking them out -- https://www.lupus.org/care-support/programs-and-services. You can talk to people who get it and won't minimize your symptoms. And Carl also offered some great advice. Take time each day to just focus on yourself and your needs. Here is a piece from one of our contributors about how she practices self care -- https://lupus.net/living/self-care-journey. Also, I am so very sorry for the loss of your mom. I know that kind of a loss can be devstating and not something you ever 'get over'.

You deserve more empathy and support than you are getting at this time. I know it's not the same and it's not enough, but please know you are welcome here anytime you need a safe space to vent or when you need to feel supported.

Gentle Hugs, Erin, Team Member.

Whew I felt your every word deep in my heart. I am sorry that you are dealing with so much. It's so hard to walk on this journey with a lack of support from medical and family. Are there any free clinics you can go to in your area? Some will see you at minimal to no cost. That my be an option to get in to see a doctor.

I would definitely appeal the medicaid decision. I know there are some rules but not sure if attending college is one of them. The appeals are different in each state so you can do an online search to find out how to do it in your area.

I see you said you were working, do you have insurance with them? If not they may have a cova program that you can join and they take it out of your check before you even see it.

It's hard to explain and convince our spouses we are sick. It is a never ending revolving door that can be so hard to deal with. When I was first diagnosed I wrote my husband letters daily so he understood what was going on.

I am holding space for you and your daughter to get the treatment needed, for your husband to come around to understand and for your comfort for the loss of your mom. ~Racquel~ Team Member