I thought I had accepted my lupus diagnosis (it's been 10 months), but lately I'm feeling like I'm going backwards and heading back towards denial....going through the grieving stages all over again, wanting to stop treatment, second guessing things, looking through every article I can get my hands on, looking for anything to say what the definite cure or symptom relief thing is. Surprise I haven't found it, but it's sending me "down the rabbit hole" as my husband puts it. How do you all… read more
I try not to let Lupus defind who I am. Treat the symtems not the desease. I try to keep moving.
Acceptance: I was DX with SLE in 2010, 6 moths later, i came down with lupus neiphritis, 6 months later it, lupus attacked my heart and required emergeny heart surgery.
I go thru the same scenario you struggle with, sure we all suffer different symtoms, setbacks.
I have almost learned to put all anger, frustration in a compartment and concrntrate on making you the best you that you can.
Realize that you are going to have down days(go smoke a joint and turn Pink Floyd up to “11” and remembet tommorrow is another day. 🎉
Karen from my own experience when we feel like an emotional mess or crying all the time it's our bodies telling us that something is wrong.
Until now you have been researching and being busy trying to find alternatives, so less time to worry. Maybe by now you would have wanted to see some progress, meds making a difference in your daily life, you being able to get back to your normal life, but Lupus is a journey with little progress and a lot of steps back, so it is natural for you to give into depression. We are all so worried with our bodies, we forget we need to take care of our mind, our happiness in the middle of this constant fight.
I also see a therapist. But your strength and thankfullness for things you have in life is what can make you more serene.
Its so hard dealing w lupus. Its even harder dealing w the unknown. Theres so much more I want n have to do. Im still in denial. I still have the Peter Pan syndrome. I dont want to admit to all that can happen. I want to see my grandchildren grow up. I want to be able to go out n have fun w my kids. N most important, I want to live my life to the fullest w my family. I don't want to be a burden. I want to be able to do at least some of the things that I used to do. And I know that one day they will have a cure. We will be able to say I used to have Lupus. Now I'm cured. Till then let's be the warrior's that we fight to be. Much much strength n love.
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