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.
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.
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!
Well, after lots of blood work and co-pays and appointments…we have a few answers.
1. I had pneumonia. For a Lupus patient, pneumonia is dangerous so that is likely the infection my body was fighting so hard to fight. Since antibiotics, it has calmed down significantly.
2. Did not have HIV, hepatitis, thyroid issues, allergies. Good to know!
3. My CReactive Protein was double signaling inflammation…we knew that so now getting to the root.
4. Waiting on the Celiac Disease test and for the rheumatologist bloodwork to come back. This doctor does not believe I have RA, but does see the Rayneuds, Scloderma and Lupus is highly active. Also needs me to get an eye appointment.
This is why Lupus is so tricky. It masks itself as so many things that baffles even the best doctors.