Category Archives: grateful

Which Flare? What does a Lupus flare feel like?

Standard

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.

Wrapping this Crazy Week Up

Standard

Temps are expected to get above freezing today as this winter storm rolls out and I already feel some normalcy in the air. Stores reopening. People driving. Making plans.

It is time. Have not worn a real bra or gotten out of the house since Saturday night. Ate only homecooked meals the entire week….no.take out.at.all. No packages delivered. Just chilled at home. Spent a fortune on water and electricity, but we were fortunate to have no pipes burst. Saw hospitality and kindness in so many different ways. Tried to give what I could in any area around me that did not need it. Walked in the snow to deliver a birthday gift. A neighbor brought me tea bags. Friendship.

Read books, took online classes, worked out virtually, read with my son, watched movies and DVDs. Worked around the house. Binged on social media. Slowed down. Read my Bible and my Book Study for church and school. Recharged. Took a break.

Now back to the grind. Will never forget this week of snow with my son. Taking one last day to enjoy it then kiss it goodbye. Epic pictures and memories to last a lifetime.