Tag Archives: autoimmune

Good News Bad News

Standard

Good News

I gained 10 pounds (108 from 98), hair is not longer-but is thicker, feel less fatigue and more joy, no joint pain at all…overall just feeling better.

Bad News

Hair still is breaking-may be early menopause more than Lupus, immune system is struggling to not get sick, latest bloodwork shows the kidneys are still full of protein despite a month of medication, I now have triple the cholesterol that I should have due to the protein.

We are upping the meds and giving it time, so keep the prayers coming.

Medications Begin

Standard

The kidney biopsy went well and the results showed what we expected. The plan is to increase medication then taper down as hopefully the kidney function starts to improve and Lupus calms down.

https://www.tiktok.com/t/ZTRDpfBYw/

You can view the Tik Tok in the link above.

Getting the news was expected, but still hard as I am pretty sensitive to medication I think due to my small frame. I call myself a one-percenter. If it has a small chance of happening…even one percent it happens to me. Fever blister, infertility, hair loss, eye inflammation, dry mouth- me, me, me.

So the journey to start 25mg of steroids daily (a lot!! get ready moon face) and 2000mg of Cellcept…an immune system blocker so mask up begins today.

My kidneys are worth it!

Kidney Biopsy Day

Standard

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.

Lupus Impact

Standard

Here are just a few of the things an auto immune disease will attack in an attempt to fight off invaders:

Hair-thinning, falling out, bald spots on scalp, dry and brittle

Eyes-itchy, burning, blurry vision, inflammation

Skin-dry, rashes especially on face, psoriasis

Mouth- ulcers (the worst) cavities due to being too dry or too much bacteria

Joints-aches, pains, stiffness, deformities, loss of grip, cannot move arms above head, hard to walk or bend at the knees, hard to dress

Blood-anemic, easy bruising

Reproductive-can cause infertility, dryness, overgrowth of bacteria

Organs-failure of vital ones, hard to breathe, chest pain, lung inflammation

Digestive-weight loss, foods hard to digest, IBS, watch what you eat-sensitivities

Brain-forgetfulness, depression, brain fog

This is a list of things I have endured in my 12 years with this disease.

Thankfully not all at the same time and thankfully meds can help alleviate much of this.

My hope is in Jesus. I am thankful I have a promise of eternity and faithfulness in a cure or in a plan or purpose for my pain. Prayer is powerful.

Disappointment with AutoImmune Disease

Standard

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

Standard

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!

Lupus Gone Wild-Health Update

Standard

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.

Real Talk About Lupus!

Standard

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.

Lupus/Health Journey 4 and Adoption Day

Standard

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!

Health Journey 3

Standard

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.

To be continued.