Category Archives: Lupus lessons

Which Flare? What does a Lupus flare feel like?

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Today I go to two doctors to check on symptoms of inflammation. One is an eye doctor…my eyes have been on fire lately and the second is my regular check up to see if the Methextrate is working or we need to try something new. Many Lupus drugs have serious side effects, so I need to be careful and check blood work often.

Going to the doctor today got me thinking about all my flares the past ten years. I often get asked “What does a flare feel like?” My response is “Which one?”

My first flare was my worst…achy joints, high fever always, weight loss, fatigue, cold all the time. We started Plaquenil and within three months I was feel good again…a new norm of anemia, infertility and fatigue always, but not hurting.

My second big flare was achy joints, fatigue and hair loss. Patches of bald spots and an itchy scalp that kinda surprised me since I did not know my hair was connected to auto immune issues

My third big flare was my scariest. Lung inflammation. I felt like I was going to have a heart attack. I could not catch my breath and my chest hurt. Again, no clue my lungs could be connected to my Lupus.

This one has lasted the longest…mirrored more Rheumatoid arthritis than Lupus. It caused me to change my meds to focus on joint pain rather than fatigue. It caused my hands to go crooked and surprisingly has impacted my eyes. No clue if it is inflammation or allergy or random coincidence but my eyes have been burning. This flare also impacted my weight and fatigue and now thinning hair. A big surprise is the new inflammation in my stomach…food does not process which makes me feel malnourished.

The crazy thing is insurance causes me to need referrals and it is hard to know what can be treated with a GP versus a specialist. So much is determined by Lupus and is just confusing. So my goal today is to get answers and maybe a better plan. I feel good mentally, but Lupus can cause depression too and I have had that this time as well. Pray that God leads me to answers and wisdom today!

I am blessed with all the advancements in this tricky disease. I am learning to accept myself at my lowest weight, infertile, bruised from blood thinners, thin hair that does not grow out and feeling tired all the time. Learning I am who I am with this disease. No one can truly understand it through my eyes and what I go through each day to make it to the next as a mom and teacher and wife…but God is using this for His glory! Adoption and more has been a gift in this and I am not dead. I have felt like dying is near at times or even frustrated that my quality of life at 42 is so different …if this is 42 what will 62 feel like…will I live to see 72? Does my child get the mother he deserves?

In it all, I will take this life and live it awake. I will appreciate what I do have through a support system and medical team. God is good!

Today I am focusing on Psalm 136:1. I am giving thanks to God. Thankful for my body. Thankful for my medical team. Thankful for prescription drugs. Thankful for a supportive husband. Thankful for prayer. Thankful for days to take off for the doctor. Thankful for the beauty in the ashes. Thankful on purpose.

Lupus and Keeping it Real

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I am going to be honest. I will never know if I have Covid because the symptoms feel like Lupus. Yesterday I began to get what felt like a migraine. Light hurt my eyes and I had a massive headache. Started running a fever and felt achy then began to just feel worn down.

Was I getting sick? Who knows but it hurt and hurt bad. I took a bunch of meds…Sinus pills, Advil, Prednisone and did a nasal rinse. Slowly starting to feel better, but if I ever had Covid then I would have no clue without a test.

Lupus can be tricky like that. Deceptive. Sneaky. Painful. If you suffer from an autoimmune disease I feel for you…it is hard especially with Covid around right now!

Lupus and the Corona Virus

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So I am one the many the media keep talking about with a compromised immune system. Do I look unhealthy or sick? Probably not. Can you tell that I have Lupus? Definitely not because you cannot tell from the outside. But I can tell. I know my Lupus by the fevers I get on a daily basis. I can tell by the aching joints, the rashes, the fatigue and twice daily necessary steroids to stay somewhat normal so I can make it through the day. I know by the year round anemia and decreased white blood cells. Truth is I may never know if I have the Corona Virus because I live with those symptoms daily. My life is all the symptoms especially in a flare. My blood work always comes back low and abnormal. Not a pretty picture, but my reality.

However, and I am probably in the minority here, my health is my biggest concern not yours or the public. I mean the public has a part by not knowingly going out with contagious diseases, but not going out right now where anyone can have been exposed and not know is all me. In the midst of all this I need to quarantine myself and not be out exposed. The truth is you do not know what to look for, but I do. So since my disease is one of those that is mysterious and easily covered up then it is up to me to stay safe. Reality is you would have no idea my immune system is compromised unless I told you. So I pray for all the people like myself that others eyes are opened. I pray my symptoms and yours stay mild. I pray all your organs stay active and well and that the good Lord brings a miracle quickly for not just this disease but sickness and disease everywhere including the heart disease of not knowing Jesus!

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!