5 Things I Took For Granted Before My Lupus Diagnosis

By Geri Rodriguez

2 min read

Getting diagnosed with lupus changed my life forever. I now had a "new normal" that I would have to adapt to. Looking at things retrospectively, there were a lot of things that I took for granted. Everyone in my family was relatively healthy, so never in a million things did I ever think twice about "normal" things in life. But, getting a lupus diagnosis really puts things in perspective. Living with lupus is hard, and I always have to keep pushing through.

5 things I took for granted before lupus

These are my top picks:

Breathing

One of my early symptoms was shortness of breath. I couldn’t walk a few feet without stopping and gasping for air. My chest hurt and felt super tight. It was as if I had just done an extraneous activity like a triathlon. I was scared and didn’t understand what was going on. Once, I got my diagnosis I learned that there was fluid building up between my lungs and chest. Before, lupus breathing was just second nature and I never thought twice about it.

My memory

Thanks to brain fog my memory is not the greatest anymore. I have to write down everything or else all will be lost. There are times when I go to google and think wait a minute. What was I hear to search for. Sometimes I forget even the simple stuff like my age or address. Just remembering if I took my medication for the day is sometimes a hassle. Before lupus, my memory was so sharp and I barely wrote anything down. It was all just in my head. I remembered dates, passwords, appointments, etc.

Spontaneity

Making spontaneous plans now is out the window. Now it all depends on how I’m feeling. How is my energy level? How is my pain level? Things need to be planned out so it’s not going to be too late for me. I can’t just on a whim decide to go out for a midnight snack because someone just randomly felt like having ice cream. Before lupus, I didn’t have to think twice about plans and just went with the flow.

Having energy

Lupus fatigue is a different type of fatigue. After taking a nap, I’ll still feel tired. There are days where I have to take multiple breaks. Whether it’s physically or mentally, lupus just drains me and it feels like a never ending cycle. Before lupus, I could stay out all night without a care in the world and still function and go straight to work.

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Financial freedom

Lupus has added such a burden on my cost of living. Having a chronic illness is expensive. Seeing multiple doctors, getting blood work/urinaylsis done throughout the year all adds up. The cost of medications is also high. We also have to factor in urgent care visits and whatever curve balls life throws at us. Instead of saving for a vacation, I now save for medical bills. Before lupus, I would see my primary care physician and OB/GYN once a year. If I was feeling ill maybe go to urgent care but that was it.

Having a chronic illness is very difficult and I have had to make certain adjustments in my life. But, I am thankful of the progress and am always hopeful for the future.

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ChrisReed Moderator & Contributor
<inline-mention username="Geri Rodriguez" user-id="4508612"/> Thanks for the great article Geri. I can truly relate. I was diagnosed with lupus while in high school. That meant I had to work extra hard in high school, college, and law school to achieve a passing grade. In my relationships, I had to make sure I was looking for the right type of guy who either had a good job or good job prospects because my disease activity is so unpredictable. I now take naps during the day and finish my work at night so that my mind remains focused on my work. There are so many things that I take for granted. Christopher Reed <a href='https://lupus.net' target='_blank'>Lupus.net</a> Team Member.
Butterfly73 Member
I took being outside in the sun for granted. I still grieve the freedom of being outside. It makes me sad that I can't be out and about like everyone else. 😔 
1. GabbyFormica Community Admin
 <inline-mention username="Butterfly73" user-id="8880136"/>, You're not alone in that, this time of year especially can be so difficult. Some people don't know how lucky they are to be able to walk out of the house without worrying about the sun in the warmer months. We hear you! Gabby (team member)
Butterfly73 Member
Yes, so true. I just want to go out and not worry. Having to put on tons of sunscreen, hats, protective clothing in hot weather, not going out between 10 and 4pm etc. Not knowing how it will effect you in the following days. It's very disheartening. Not able to fully relax on a nice tropical vacation. I went to Cancun and I was so busy running from the sun, it was embarrassing and I felt like I was not able to really enjoy and relax. I had to plan most things around the sun limiting me and my family's fun. I truly hate this limitation. <inline-mention username="GabbyFormica" user-id="4217065"/> 
1. GabbyFormica Community Admin
 <inline-mention username="Butterfly73" user-id="8880136"/>, It's so hard for others to understand when they aren't living with it everyday. Gabby (team member)
Butterfly73 Member
Right. Very true... 💯
CommunityMember1f1799 Member
Sometimes i feel like im going crazy ,so confusing. I cant put weight on my feet itchy scalp feeling like something is crawling under my skin 
1. Erin Rush Community Admin
 <inline-mention username="CommunityMember1f1799" user-id="9903698"/>, I know a lot of our members can relate to what you wrote! It's hard not to feel like you're going a little crazy when you deal with weird symptoms like itching, weird sensations under the skin, and more! But, you're definitely not alone in this! Best, Erin, Team Member.