Lupus Is Killing Me

By CommunityMember172

2 min read

I was officially diagnosed only about a year ago. My Mother-RIP-also suffered & lost her battle with this devastating disease.

Struggling with self-esteem

I believe I have been suffering for Lupus for many years. The thinning of my hair and the problems with my skin have destroyed any self-esteem I ever had. If my skin wasn't so disgusting looking; I would love to just go ahead and shave my head completely. My mental health is drastically getting worse. The constant fatigue and pain have me to the point of being in tears, just taking a regular shower. I am extremely heat sensitive. And now I only leave my house when I have to.

Thankful for my loved ones

I'm lucky to have a wonderful neighbor that goes out to get groceries and other things for me. I also have Fibromyalgia-which my Mother did as well. I feel like I'm losing this battle. But I don't want to give up; because I am blessed with 2 amazing kids. My daughter is married and in process of being able to adopt a newborn girl. My son is a teenager & I am lucky to have them both. The fact that he still lives with me, gives me the motivation to keep fighting. But I hate him seeing me suffer so much. I have a seizure disorder also. And just feel that I am a burden.

Fighting through the hardest days

I am trying desperately to hang on & not give up the fight; like my Mother did. She took her life. I am consumed with the guilt of not being able to save her. I can not have suicide be a family legacy so to speak. Brain fog is also infuriating. I used to be very outgoing and always making people smile. Lupus has destroyed the person I used to be. That's plenty of negativity for now. I'm sorry, but these past 3 days have been a living nightmare. Some days are better than others. If the sun comes up tomorrow; I will fight through another day.

Editor's note: Feelings of depression can often occur when living with lupus. If you, or someone you know, is struggling with thoughts of suicide or self-harm, please know there are many resources available for support including the the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Racquel H. Dozier Moderator & Contributor
<inline-mention username="CommunityMember172" user-id="4160733"/> first let me give you a huge gentle hug. I am holding space for you that you keep fighting for you’re life. You are so brave to share this part of you. Those rough days can really take a toll on our mental health. I want to encourage you to find someone to talk to so the burden isn’t so heavy on you. I know it’s hard especially through pain, but you can do it.please don’t give up and always fight for guys life beyond it all. ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member 
1. CommunityMember172 Member
 <inline-mention username="Racquel H. Dozier" user-id="2041433"/> Thank so much. As we all know, some days are better than others. I am extremely grateful that I have my kids~They are my motivation. I am a little better mentally today. But need as much sleep I can get. Also lucky that my son even tells me that I need to get some sleep. He is so good at making me laugh during my dark days. I wish I was better at hiding my emotions from him. He worries so much about me. And helps me with no complaints. But he is almost 16, and has enough things to deal with at his age. He should not have to worry so much about me.
2. Racquel H. Dozier Moderator & Contributor
 <inline-mention username="CommunityMember172" user-id="4160733"/> I’m so glad it has been a better day. You are so right on that sleep part. It really helps to stabilize so much for us. I also can relate to how your son is. My son has been the same way since I was diagnosed and still to this day. As he has aged he has always said that it was his job to take care of me especially when my husband wasn’t immediately available . It’s is hard for the kids but so glad you have him as motivation and a help. Reach out anytime if you need to talk. It’s always good for support and just to know someone understands. ~Racquel ~ lupus team member
TANISHA46 Member
I moved to The Makah Indian reservation in August 2021. I wanted to be closer to my father and his family. I am enrolled our tribe now. I love being here. I came here from southern California. The sun started to become a problem to my skin. I would get a horrible rash on my face, my chest, and well every part exposed to the sun. So moving to the most northwestern peninsula rain forest was a wonderful feeling. I love the rain. I love the snow in winter. I love the gray clouds. I'm laying on my bed, looking out my window. The view of the marina with waves crashing on the rocks. I think it's called a jetti. The rocks make a wall that keep the marina calm. Across the bay is Canada. I love hearing the seals. It brightens my day when I see the eagles fishing. Some days there are 30 plus eagles in my view. And since I spend most of my time laying in bed, my view is breathtaking. I take a lot of medication for pain, Lupus, muscle relaxers, anxiety, stool softener, hypertension, and vitamins. And still the pain never leaves me. Somedays I try not to think about suicide. I tell myself I am still raising children. I don't like suffering in pain. But moving here has been good for my mental health. I am going to ask for counseling on my next doctor's appt. I fell asleep at 3 am. I woke up at 11 this morning. It's hard to fall asleep these past couple of days. I opened my window to get a full view if the beauty that surrounds me. 
1. Racquel H. Dozier Moderator & Contributor
 <inline-mention username="TANISHA46" user-id="4696761"/> I am sending you gentle hugs. It can be so difficult to deal with everything you are dealing with. I’m so glad for you though because you get to have a scene daily that can calm your mind and your spirit. I love that you recognize when you may need some extra help. Please definitely ask about being able to see someone to talk to it will help I’m sure. Keep pricing the beauty around you it sounds so soothing and helpful. Thanks for sharing all of this with us. Reach out anytime to get some support. ~Racquel ~ lupus team member
Ava Meena Moderator & Contributor
I'm sorry that this battle has been so tough for you. I am also frustrated with my thinning hair and embarrassing skin issues. My oldest son is four, and he's already seen me struggle with pain and cry in despair far too often. I try to hide the worst from him but it's just not always possible. You mentioned that you were only diagnosed a year ago? I bring this up because often lupus treatments can often take a while to kick in or sometimes we realize that they aren't working well enough and you might benefit from trying a different medication if that's the case. Perhaps your doctor could help by providing more options for getting your symptoms and pain under control? I encourage you not to give up and to keep reaching out for help. Last year, after my second son was born, I went through a serious mental health crisis and have had to see a therapist and make some big changes in my life. It's tough, and I'm wishing you the best. -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team