Who knew a kidney biopsy would be so invasive? Today was the closest I have ever been to surgery. Fasting, pre-op, sedation, IV then bedrest and no driving.
Overall, it went much smoother than expected. With Lupus and Rayneuds, you never know how your body handles stress. My husband took off to be my personal driver and nurse.
So now I follow recovery orders and stay out of the water, no driving, no exercise, no heavy lifting and wait for the results. Praying meds can get it under control and no further treatment is needed.
This journey has taught me to do better about avoiding stress or at least reducing it. It also humbled me that my Lupus is active and the effects are real. Celebrate the good days and take care of myself.
Praising for the faithfulness that God is in control. His word and worship has kept me going. Love of family, friends and strangers reminds me that God created us for community.
Organ damage hit me hard, but will not knock me out.
After meeting with the nephrologist, she suggests getting a kidney biopsy to learn the extent of the kidney damage. Originally, I thought this was a good idea, but as I learn more I question if this is necessary. Of course, I want to know the extent of the damage, but will it change the treatment? If not, then can we skip it?
Who knew the biopsy would be considered an outpatient surgery? The cost is very high since my deductible is high. The recovery is longer than I thought. Just wondering if it is necessary. I know this is a result of Lupus so let’s get it under control.
I question if I do not get it, will I miss treatment that is necessary. Who knows. What I do know is Lupus is evil. It attacks healthy cells. It attacks organs. It masks itself as good. It is deadly, painful and rests only to act up again. It is uncurable and induced by stress but our world is stressful.
So for now I pray and wait and hope for a cure and long for a full life not cut short by disease.
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.”
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.
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.
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.
Happy Adoption Day to Callen! 9 years ago yesterday we made his Adoption official in a courthouse in Houston!
Had another appointment with a Rheumatologist and it is getting expensive with co-pays! Found more protein in the urine so now we do a 24 hour Urine test which is gross and kinda tedious. Holing to find more answers!
I am sick. Lupus does that to you. Most days I do not mind. Most days my disease is manageable. On the hard days, it sucks, but all in all I am blessed. My struggle is silent. I go to work daily. I rarely complain. The people who know the truth are my son and husband. They feel the weight of my lack of energy and overall fatigue. Sad, but true. My job gets the best I can offer while my family suffers.
I started with Plaquenil and it worked until it didn’t. Methotrexate was a no go after a few months. Cellcept lasted a month, but I am stopping it due to excessive hair loss. I am sick, but I refuse to look sick.
This was a good pic of me in November. Hard to believe that was 3 months ago.
I have such thick hair that the hair loss is still somewhat disguisable, but I see it and feel it.
This is Lupus. It is sneaky and complicated and can bring even a confident person to their knees. I am stopping Cellcept until we can start something else. I am willing to endure the temporary pain. Pray with me as we figure this out. I think Benalysta may be next.
I want to start by saying that this year for me is WAY better than last year, so I am thankful. Last year juggling virtual teaching and student absences while trying to maintain a gradebook was intense. I will always be grateful for my mental health this year, however teachers across the country are abandoning education at a massive rate. I struggled to put into words why…but then a teacher I follow on Twitter said it perfectly…
The teaching game has changed, but the mindsets of those making the decisions and laws have not. They want to “catch up” kids to make them what they use to be and these kids are not what they use to be. Families have changed, education has changed and now laws need to change. The stress being put on teachers to test and perform is breaking our spirits as more hours of tutoring, documentation and building up their SEL is exhausting. I made this TikTok last year I think of one of my favorite Christian songs called Truth Be Known. It sums us up well…looking good, but feeling weak.
God is my source of hope and strength so I know my foundation is firm. I have endured this business for 20 years so I know I can endure this valley, but those that do not know any different are walking out at an alarming rate. I get it. I hate it, but I get it.
On another note, wow how Lupus has changed my hair. No clue when my hair began to fall out and thin, but seeing my hair in this Tik Tok is shocking…long, full of volume…this is it today
Not without hope, but definitely not what it was. Crazy how a medicated auto immune disease can do that. My devo today said God has a purpose for my broken body and I am putting all my faith, hope and love that it is true.