Category Archives: flare

5 Things I Learned from Lupus

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I feel like I am a success story with Lupus. One big reason is that the good Lord gave me mild symptoms and for that I am grateful, but another big reason is I have learned to live with it and know my place with this autoimmune disease. So here are the top five things I have learned after being in tune with my autoimmune:

1. What you eat matters!

This took me a while to accept but it is true. Certain foods (mostly processed) will send me into achy overdrive. It does not mean that I cannot or do not eat those delicious cheese fries, Cheetos or fried anything…but it does mean I know I will pay the price and honestly it is not always worth it.

2.Have less fear if the liquid is clear.

I had read somewhere that the darker the liquid, the more things added to it. No clue if it is true, but I have found the clear liquids do not send my body fighting as much as the dark. Coke, beer, sweet tea (why, God, why?) get me achy and fatigued, but if I stay with Vodka, Sprite or of course water then I can usually keep the party going.

3. Say yes to the mattress!

Who would say no to a good nap?? I immediately get sick when I live a lifestyle of less than 8 hours of sleep. Now life is busy so this is not always possible, but our bodies are made to need rest and we need to choose to listen.

4.Say NO to stress!!

As a teacher, stress is inevitable. A quote I read says “Teachers make more minute by minute decisions than a surgeon.” I believe this…so stress will happen, but I can choose to avoid stress whenever possible and I do. One way is I stopped watching reality shows or any show that is fighting just to fight…trust me this was hard…but Real Housewives or Mobwives just had to go. FB drama had to go too…I refuse to click on the video with the fight or add comments to the political posts going nowhere. In my marriage, when things get heated…I go to the word and prayer instead. Life in general is lived more peacefully when you know God is in control and has a purpose for you. Now, I am not quite at the place where yoga is more calming than painful, but I am sure I will get there.

5. FINALLY..Exercise helps.

This is tricky because overdoing it wears me out. Also, when I have already worked all day the last thing I have energy to do is go to the gym, but it helps. I will admit that. Probably helps with the stress and mind part of things, too. But I used to refuse to work out and now I make time for it. In the beginning, it is exhausting, but as you build stamina it gets better. 

Now I am sure you are all reading and thinking duh! Even people without Lupus know eat right, get exercise, and rest will help the body…but here is the question: do you do it? Likely, a little but not all the way. I have learned I have to do it or I have no energy, run a fever and experience joint pain. No fun, right? So everything is a choice but my choice is made loud and clear with my body. I have learned to (finally) listen to my Lupus for a happier life!

Lupus Limits…But Does Not Stop

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I must admit I am one of the fortunate ones living with Lupus. My symptoms are mild, the meds I take are working, I was diagnosed quickly, my vital organs are unaffected; seriously, I am fortunate. My Lupus mostly involves my nervous system, my endocrine system and reproductive system. All those systems or words I would have never known before my diagnosis so basically my nerves, blood and ability to have babies. When I flare and I do weekly, I get fatigued due to chronic anemia, my joints ache like a 90 year old man, and my fingers turn white or purple. Right now my flare includes Pleurisy which means the lining of my lungs are inflamed…the sun is my enemy. Through it all I am grateful because my God has used it for good. This disease brought me a child through adoption that I would not have ever met, the sick days help me to appreciate the healthy days and my experience has helped me to encourage others going through similar things. To be in my low thirties with a chronic illness triggered by such common things as the sun and stress is intense, but I am alive and choosing to stay alive (there are some flares so bad I have felt like death) and choosing to live my life rather than let it live me.

Insert soccer.

When I was being diagnosed I told my doctor I played soccer. His response: not anymore. He went on to tell me that my blood levels showed low iron and chronic anemia so any major physical activity was dangerous. I took a few games off, but continued to play. The fatigue was intense after sunny games but we always had subs so it worked. However in the fall of 2016 I was in a major flare and for the first time in 15 seasons I had to say I could not play. It was defeating as I knew I was really sick to skip soccer. 

That was 2 years ago. I probably felt good enough to play again, but new players join and your team changes.  So I was not asked the next season and then I think the team took a season off so when I got the text to play I considered it. My biggest concern was that my lungs are inflamed right now which feels like a heart attack while resting and like an asthma attack when running-not too smart to say yes, but it will go away.  I also knew it would be hard after not playing two years so I had to speak to my hubs since he would be watching the kid and me if I get sick, but when he cheered me on I went for it.

Last night was the first game and it felt good. I was nervous all day, resting my body, drinking water, taking medicine…but it all felt good.  My biggest fear was my inflamed lungs and they were tight after long sprints, but two subs on the side could be called in at any time.  We won and I got some good touches, but most importantly I played. I was fearful two years ago that I never would again. So unsure if it was a good idea that I kept it a secret so no one could talk me out of it. But I feel okay the day after and since the games are at night, I think swimming will kill me before soccer 🤪 

Lupus does limit me, but it will not stop me. Soccer is what I do for myself. On the field I feel my sexiest and my mind is cleared.  I feel badass to be 38 and still playing. The best part is I challenge my mind and body and grow closer to the Lord as I praise him for the chance to show good sportsmanship and meet others with the same passion. Today I am grateful to be a soccer player living with Lupus again. My call of action to those without chronic diseases is to go out use your body. It is a beautiful thing of science and should not be wasted. Do not waste your health!