Laid up in bed because my coughing has put a pain in my side that makes it hard to move painlessly. Pretty sure it is inflammation creating tightness in my ribs, but boy it hurts when I cough! Thankful to have this week of rest and recovery.
The Cellcept is working. Glory to God for an answer to prayer. Two months ago, blood tests showed no change in the protein in the kidneys. We decided the “wait and see” method. Thankful we did. Most recent reports show a huge drop in protein (4000 to 1500). Still a lot of protein, but decrease shows promise. I still do not feel 100%, but I never will with Lupus. I do have lots of reasons to keep hoping and fighting and praying for a cure.
My main workout of choice is Camp Gladiator. I love how the workouts are mixed it up to target different parts of physical fitness. I value time with others and growing positive friendships. Recently, I have clung to on-demand virtual. Such a great option when you are low on time, love a certain trainer and like to pick your workout. Virtual works best for me with a child, but community is good when you can get out.
On my random days, I run. Nothing big but run with a target in mind like a distance or space. Recently it is a half mile for time. Goal is to get better while vibing with my music. Music gives me life. It connects me, grounds me, inspires me so the right music is the perfect self care.
A local studio opened up last year in my area that is crazy expensive (like 200 a month for limitless classes), but also offers intense workouts with community. Sometimes people offer the best pick me up and mind focus you need. Arise Kaufman gym hosts cycling, boxing and a new favorite sculpt. Tone and definition is my new goal so this workout is life.
Finally, shakes, energy teas and protein bars are the ways I fuel my body to only further the results. These treats are my motivation as well or even a reward. You gotta inspire yourself sometimes or you will inevitably quit and I struggle with consistency when I am bored.
No matter how you move-just move! We overcomplicate it at times and scare off the people that just need to be told do something…it feels so good when you are done! I believe big our body is a temple from the Lord so treat it well. Life is better when you feel good about yourself.
I just returned from a week in Mexico.
It was gorgeous, relaxing, adventurous, fun and much needed. I always plan it the week before I return to school as a last way to recharge, reflect and get ready.
The sun, blue water, time for self care is good for my soul. Seeing the Lord’s work in nature and taking the time to listen to what he is saying with new opportunities is a gift.
But this trip hit different because a year ago today my life changed when my marriage changed along with a stressful year in education (see other post about change and reforms in school). In this last year, the stress of all the changes restarted my body to get sick-very sick and it was obvious if you looked at me for the first time ever.
The butterfly rash, psoriasis, weight loss, eye inflammation, dental issues…all the symptoms came roaring back. The hardest was the weight that caused people to ask if I was okay and the hair just getting thinner and shorter without being cut.
It led to two new medications and finally tests and a biopsy.
Pictures do not lie! I usually pull it back, but this night I got feisty!
I often want to step out of the picture or refuse to take it, but I will not let pride and vanity win. This.is.me! This is my season of sickness. It is rough, but my reality. So I will show my confidence and continue to take the selfie or portrait. I an more than my appearance. I hope I inspire young girls that think they are fat or ugly to be confident and brave.
The hair will grow back or I will invest in wigs and hats. This is Lupus and the world needs to know…even Virgin River had a story on the disease!
So I start these meds today and wait patiently for a cure and hopefully an answered prayer with little to no side effects and some relief.
Pray with me!
I do it every time.
Hear a diagnosis then Google it to death.
What I really struggle with is fear, control, the unknown and what-ifs.
God has the answer.
When will I learn to start with Him?
He knows, He cares, He loves.
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.”
The journey continues!
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!!
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!