Monthly Archives: June 2022

Disappointment with AutoImmune Disease

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So now that my summer break is here I am ready to tackle this Lupus flare. I was referred to a nephrologist only to learn she is booked up until August. It was devastating since I return to school in August. By God’s miracle, I got a call that said she could see me that afternoon and I went no questions asked.

She reviewed my labs and gave me the news I am stage 5 Lupus Nephritis. Not good. No blood in urine, but very high protein. Crazy because I have no symptoms yet.

She is referring me to get a biopsy to learn how bad it is. The biopsy will determine the treatment. It is so disappointing.

The rising cost of co-pays. The fear that my organs are being attacked. Thinking about living with this disease another 40 years…it is frustrating.

All I can do is give it to God and be okay with whatever may come.

Lupus Update and Reality

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I got my 2nd chest xray recently and the results of the awkward 24 hour urine test (so gross to capture my pee for 24 hours straight).

The urine test confirmed high protein so now I go to a kidney doctor to get biopsy and learn more. The doctor should be able to put me on the right drug to calm the disease.

The xray showed no progress so they conclude it is not pneumonia, but rather my scoliosis crowding my lungs. It is weird since I had symptoms of congestion and cough and the antibiotics helped. However, the xray revealed just crowded organs with a suggested follow up to be sure.

Basically we have to calm the disease before it continues to attack more organs. I have seen improvement since being less stressed and off of work. Resting more and doing things I enjoy and relaxing. I gained 9 pounds since May. True blessing!!

So now we explore how to help my kidneys and calm the disease so “Lupus will stop doing what Lupus does which is attack healthy cells and your body.”

The journey continues!

Perspective is Everything

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Summer fun can be exhausting. Getting up early, going from lesson to playdate to camp…being in the car from 30 to 45 minutes at a time depending on traffic. Doing all I can to make memories and do all the fun stuff while school is out. Keeping cool in this heat…fun, but tiresome.

I was expressing this thought to my son’s tutor whom is a widow and all three of her boys are grown and out of the house. Her response surprised me.

She said the busyness traveling in the car is what she missed the most about raising kids. She explained the time she spent talking, laughing and going to all the places for the summer are the memories she holds dear to her heart. Being all together in the car is priceless.

It made me stop and think the thing that exhausts me is what she misses. I should learn from her and change my perspective and find joy in this phase of life. Appreciate the talking, the questions and the places we travel together. Value this moment in motherhood.

Don’t miss the memories we are making. God has given me this child for this moment and I refuse to miss this opportunity by not appreciating how blessed I am. So thankful this lady could unknowingly mentor me and change my perspective before it was too late.

Golf even if you suck!

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I suck at golf. The guys behind us confirmed our slowness but we did it anyway. No practice and way too much confidence but we finished and laughed and kinda loved it despite 104 temps.

Whose idea was this? Oh wait….it was mine.

Bought a cute outfit. I was on point

Was I the best? No where near it. But we laughed, took pics, made new friends, had an adventure.

Live life and have a blast!!

Lupus Gone Wild-Health Update

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The hair loss, weight loss, cramps, stomach issues, swollen joints, ulcers, skin rash and night sweats….were all a result of Lupus.

Not a disease.

Not Rheumatoid Arthritis.

Not Celiac Disease.

The Lupus I have always had, just very active. There are still kidney issues that are likely a result of my Lupus gone wild, but Lupus is the disease that created the drama.

So yeah…this disease sucks.

Love your wife…lead your family.

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Kids watch. The older I get one of the things that shows love the most is how spouses treat each other especially in front of the children. I want my son to see the way to treat a woman in the way my husband treats me. I am not referring to gifts (though that is nice), I am talking about kind words and actions that show love.

The tone of your voice. The words that are spoken. The sacrifice of your time. The things that keep a marriage strong and going even when getting along and growing old is challenging. During Sunday school, a kid gave me this answer while filling out the craft and it almost made me cry. This dad gets it and the child sees it.

Love your wife…lead your family.

Heavenly Father Love

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If you want to know how much God loves his children, watch how Callen’s Paw Paw loves him. It is real, genuine and limitless. God loves you this much and more. It is indescribable!

Happy Father’s Day!

Real Talk About Lupus!

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Lupus is sneaky. It mask itself as several diseases. It is hard to diagnose, has no cure, and even more challenging to treat. No one experiences Lupus the same way. No doctor has quite figured it out. It is your body attacking itself.

Fatigue, joint pain, rash…the main symptoms, but there are so many more! Some that only appear when you get sick. Getting sick is tricky because it looks like a Lupus flare, but could be so much more just hard to tell.

So hug your friends with autoimmune diseases. Their pain and hurt is real and hard to share since they do not look sick, but feel sick all the time. Their good days are some of your worst. Stress is a trigger which some jobs and relationships are stressful all the time. Working out helps, but also makes you even more tired. You.just.can’t.win.

You have it long enough and you no longer want to complain, so make sure they do not have to…just love on them all the time.

Donation or Trash?

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I get it…one person’s trash is another man’s treasure. However, sometimes trash is just trash. If it is stained, broken, has holes, has your name…it is trash. Be mindful someone has to sort, organize and sell the things in your donation. The donation room fills up fast and space is full quickly. Let’s help these hearts for others by being mindful what you give.

Taste and preference is understandable…it looks nice, but not for me. But just because you cannot throw it away does not mean someone else should have to do the job. So give generously things worth giving, buy consider these people deserve more than your trash.

Who Doesn’t Have 30 Minutes?

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My recent health Journey had me put a hold on intense workouts. For one, I had no calories to burn. For two, the workouts wore me out with my low body weight and muscle burn. Little did I know these last couple of months I had pneumonia and possible kidney disease (we are learning more with tests).

I know a key to handling Lupus is exercise and it workouts are so good for my stress. Add in that at this weight, muscle tone and definition is so nice. And you cannot forget it is swimsuit season so even though I struggle with my bony frame and hair loss…I want to look as good as possible.

Smaller chested brunettešŸ˜‰

Although it feels like I am wasting my Camp Gladiator membership…I have started utilizing the website. Specifically, on demand workouts and quick hitters. 30 minute workouts targeting the areas you want to grow. Who does not have 30 minutes to take care of yourself?

Choose the time, the area of focus, the trainer- it is all up to you. Great for those that cannot go all in, but cannot afford to give up.