Sometimes the hardest thing about Lupus is not the disease, but the medication for the disease. I was coming down with a cold which means disaster for my body-think aches, fever, muscle cramps, fatigue, sore throat…all for a cold. So I had to increase my steroids by a lot…I mean a lot a lot and the return is what we call steroid face. A necessary evil. You feel better, but look worse as your face appears to swell overnight.
I am thankful to God for the medications needed to live and wish I was not so vain…but it does stink what it takes to stay healthy-it .is.hard.
On a positive note, I gained weight and my hair is growing. I feel better and less depressed so life is good today!
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.
Today was the virtual consult with the nephrologist. The biopsy revealed the Class 5 Membranous Lupus we were expecting. This was good news since the kidneys were not worse than we thought. The medications will be intense. 2000mg Cellcept daily and 25 mg of steroids daily.
Nervous if similar side effects will occur like last time causing my hair to fall out, lip blisters and overall decline in my weight and health. This drug is most famous for the stomach issues which is a struggle when you are trying to gain weight. Overall, my biggest fear is just struggling to stay thriving. Fatigue is real on these medications! But, this is a fight for a major organ so I will suck it up and follow doctor’s orders.
I serve a mighty God! I serve a God that saves and goes with me. Today made me feel frustrated that we have to get serious with medication right before I start back to school where my stress kicks in the highest…so afraid of going backwards and just feeling beat down when I need to be stepping it up. But I will trust in God’s promise that he goes before me, stay grateful for the good things he has done and remain hopeful for a cure and better tomorrow with Lupus.
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.”
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.
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.
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.
I am going to be honest. I will never know if I have Covid because the symptoms feel like Lupus. Yesterday I began to get what felt like a migraine. Light hurt my eyes and I had a massive headache. Started running a fever and felt achy then began to just feel worn down.
Was I getting sick? Who knows but it hurt and hurt bad. I took a bunch of meds…Sinus pills, Advil, Prednisone and did a nasal rinse. Slowly starting to feel better, but if I ever had Covid then I would have no clue without a test.
Lupus can be tricky like that. Deceptive. Sneaky. Painful. If you suffer from an autoimmune disease I feel for you…it is hard especially with Covid around right now!