Challenging Symptoms

By kardannes

1 min read

Hi my name is karen willis, I am 51 years old. I was diagnosed with lupus Nov. 19, 1999. I have 3 adult daughters, with my first grandchild on the way (so excited). My journey has been a very long and hard one. Just when I think everything is under control, something new pops up, I mean things that I had never even thought of happening. My lupus is so aggressive that, I spend a lot of time in the hospital, even now. With God on my side, I know I can make it through anything.

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?

Share my experience

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.

Join the conversation

Please read our rules before commenting.

Lawrence Community Admin
Hi <inline-mention user-id="2040717" username="kardannes"/> ! Welcome to the lupus community and congratulations on introducing your 1st grandchild to the family! This is so exciting. We are thrilled to hear this news. Living with debilitating pain is very hard, and reading and learning more about your journey reminds me of many others here within the community. So know that you are not alone in this journey. Let us know how we can be of help to you, and remember that there are many members here within the community that would love to share their experiences with you also. Sending you healing hugs! -Lawrence (Lupus.net Team)
1. kardannes Member
 <inline-mention username="Lawrence" user-id="2040879"/> thank you so much❤️
2. kardannes Member
 <inline-mention username="Lawrence" user-id="2040879"/> I can’t get an ambulance to take me to my appts. They don’t do it anymore.
Linda from Texas Member
Prayers lifted for you, Karen.
1. kardannes Member
 <inline-mention username="Linda from Texas" user-id="2045123"/> thank you so much God bless you!❤️
Lupusmom3 Member
When I'm around people that has lupus. I have my lupus family and my real family. Family don't understand what I go threw
1. kardannes Member
 <inline-mention username="Lupusmom3" user-id="2036889"/> I feel the same way. God bless you!😍
2. kardannes Member
 <inline-mention username="Lupusmom3" user-id="2036889"/> they really don’t, and it’s exhausting trying to keep telling them.😫
Lupusmom3 Member
I get tired of being in pain all the time
1. Cody Leach Member
 It's understandable to feel tired and worn down <inline-mention username="Lupusmom3" user-id="2036889"/>. I hope that you're able to find some momentary relief soon, even for just a few moments! Sending positive vibes your way. - Cody (Team Member)
kardannes Member
Sending prayers to you all
kardannes Member
I don’t think anyone know what I’m going through. I’m in so much pain today that it’s hard to move my neck. I keep taking Tylenol to get rid of the headache that goes away for a few hours, just to come back with a vengeance if I fall asleep and wake up. I’m tired all of the time.
1. kardannes Member
 <inline-mention username="GabbyFormica" user-id="4217065"/> thank you so much for talking to me. I really don’t know how to use this lupus app yet. They changed everything around on here.
2. GabbyFormica Community Admin
 <inline-mention username="kardannes" user-id="2040717"/>, Sorry to hear it's been confusing. If you have any specific questions feel free to reach out, I'll do my best to help! Gabby (team member)
kardannes Member
Gabby I’m on sleep medication but, it puts me to sleep, then I’m up in a couple of hours. I don’t sleep too well at night.
kardannes Member
<inline-mention username="GabbyFormica" user-id="4217065"/> gabby, Hope that you are doing well.
1. GabbyFormica Community Admin
 <inline-mention username="kardannes" user-id="2040717"/>, Thanks for thinking of me! I hope you are doing well too, wishing you a flare free weekend! Gabby (team member)
kardannes Member
<inline-mention username="GabbyFormica" user-id="4217065"/> im still having a hard time. My dr took me off of the methotrexate because it was hurting my kidneys so now I’m on cellcept and waiting for an approval from my ins. co. on my benlysta. I’ve taken both of those meds before and have done well. Please pray for me as I will continue to pray for you. Have a great weekend.
1. GabbyFormica Community Admin
 <inline-mention username="kardannes" user-id="2040717"/>, I am thinking and praying for you as well! I'm so sorry that you have been facing so many barriers to being able to finally feel well and be supported by both your doctors and insurance company. I hope that the Benlysta approval comes in soon and that its a good fit for you! Sending hugs, Gabby (team member)
kardannes Member
<inline-mention username="GabbyFormica" user-id="4217065"/> My insurance has approved my Benlysta, since it’s a special medication it goes through cvs pharmacy, then it’s delivered. I’ll have it by july13th. Praise God today is my birthday. I’m 53 today. 
1. Racquel H. Dozier Moderator & Contributor
 <inline-mention username="kardannes" user-id="2040717"/> so glad you were approved. Here’s to feeling a little bit better. Happy Birthday! ~Racquel~ lupus team member

Community Poll

Do you read through your insurance policies and ask questions?