Blindsided by Lupus and Autoimmune Diseases

By Ejohnson68

1 min read

I was diagnosed with SLE Lupus 15 years ago.

Growing list of diagnoses

Since then, I have been diagnosed with Fibromyalgia, Sjogrens, Raynauds and this past November, tests showed my Thyroid is having problems. Being tested for Hashimotos disease and also have to have a biopsy done on one of three nodules on my thyroid.

Fed up and frustrated

I had to medically retire 7 years ago. I was only 46 at the time. I get random rashes and get shingles a lot. I have trouble swallowing and get food stuck at the bottom of my esophagus all the time. So very frustrating because I look healthy but have been steady declining over the last few years.

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Racquel H. Dozier Moderator & Contributor
<inline-mention username="Ejohnson68" user-id="4599694"/> thanksnyou for sharing. You are dealing with so much. I can relate to having to medically retire and the frustration that comes with dealing with it all. We are here if you need support and have questions. It can all be so overwhelming. I am sending you gentle hugs and holding a space for your strength. ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team member
Ava Meena Moderator & Contributor
<inline-mention username="Ejohnson68" user-id="4599694"/> I'm sorry to hear about everything you've been going through. I can relate to an extent, I actually wrote an article about my frustration that my diagnosis list continues to grow: https://lupus.net/living/overlapping-health-issues I also have Sjogrens and dry mouth - I had to give up toast, crackers, and so much more because I'd feel like I was choking on it. It's such an unpleasant feeling. My doctor has recently suggested a medication that increases saliva production and I think I'm going to give it a go. Have you considered something like this? Thank you for sharing with us; wishing you the best! -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team
CommunityMember172 Member
Lupus has completely changed me. My self esteem is absolutely gone. Because of my hair falling out and scars all over my skin-I am disgusted with my appearance. I avoid mirrors as much as possible. That light at the end of the tunnel gets dimmer every day. Brain fog, constantly being exhausted no matter if I get or how much sleep I might get. I am fed up with being so negative. I hope to be able to make inspirational posts on here 1 day. They are many stories I relate to. And I am on here desperate for inspiration and positive stories. I can't lose this battle-because I am a Mom.
CommunityMember172 Member
I forgot to mention that I did go ahead and have my esophagus stretched. Because of my increased difficulty in swallowing. I would even burp up a pill sometimes thinking it had went down. But as the surgeon told me-I may need the surgery again. Within the 1st year of opting to have the surgery-I am right back to the same level of difficulty I had before the surgery. I will not continue to have the same surgery repeatedly now knowing how short lived it benefited me.
1. GabbyFormica Community Admin
 <inline-mention username="CommunityMember172" user-id="4160733"/>, I am so sorry you went through so much medical trauma, just to have the same issues return. On top of dealing with the pressures of motherhood, life, and lupus complications...it is completely valid to have dark days. I hope there is some comfort in knowing you are not alone. While the inspirational stories are important and very real, there are many lupus warriors who are struggling to feel optimistic. Just take things one day at a time and try to be gentle with yourself. You are doing so much already, you don't need any added pressure 💜 We hear you. We are here to listen on the good days and the bad ones. Sending hugs, Gabby (team member)
CommunityMember172 Member
Thank you for your kind words