Author Archives: intunewithmyautoimmune

About intunewithmyautoimmune

I am a 41 year old woman living with Lupus, dealing with infertility and pursued adoption-he is ours! In spite of it all and because of it all, I am blessed.

Good News Bad News

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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.

Teacher Love

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I truly believe we are in the age of a teaching revolution where the spotlight will be how we can support education. Already seeing more reforms for stipends, better security and awareness of the teacher shortage and how the community can support us.

I love it. I feel valued and heard. It inspires me to keep going knowing I am seen. Teachers should be respected, but it starts with respecting ourselves.

Be the professionals we are in our dress, conduct and attitudes of what we do. I am not saying jeans are bad-but do not roll up like you are about to garden. In fact, I would prefer scrubs!

I am looking forward to a year where it is acknowledged that teachers have been leaving (and may continue to go) so embrace the ones that stayed. Value the extra confident ones while supporting and encouraging the ones that see the struggle.

We are in this together and there is room at the table for more educators ready to join together and speak truth of critical needs that should be addressed such as increasing veteran teacher pay. How many companies enter your best pay your first year (new and clueless) and after 20 years make about 8k more than when you started? 8% increase over 20 years?!? We can do better.

Creative Children

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My son struggles in every subject academically. He is reading 3 grade levels below, struggles to do basic math, loves science-but often becomes confused on the reasonability of an experiment….and he is honest that he does not like school.

School is not his thing. He will likely go into a trade or my guess create a new business or invention.

He thinks outside the box and sees objects for what they can become not what they are actually suppose to be.

School does not promote this learning. In fact most schools stifle it with testing. One answer that everyone needs to figure out.

But this guy is creative and you cannot teach creativity. You provide opportunities to grow it then let them flourish. He has a beautiful mind and although I worry often about him getting a job and being a productive citizen with a high school diploma, I know Ephesians 2:10 promises me he is made for a purpose and God has created him to do specific things.

Supplementing your Workout

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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.

The Difference of a Year

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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!

Medications Begin

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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!

Positive Change for Teachers

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We are not baby-sitters. Summers are not completely off. Anyone cannot be a teacher. It does require a college degree. Our job is not easy. It is not true “If you cannot do-then teach.”

I have heard this and more and it is just.plain.wrong. But finally, our voices are being heard as there is a MASSIVE teacher shortage across the entire USA.

For the first time in my career districts are negotiating and offering incentives for teachers. What we do is challenging and most do not do it for money, but so good for others to see our value and importance then recognize it with more decent wages. Teachers are priceless and I hope this brings the reform and change in mindset we deserve. This season will be hard, but with our voices we can bring about some change!

Teachers-do not let this time in history pass us by! God is doing something in this hardship and making a way. He has heard our prayers. We are some of the most graceful, patient, flexible, persevering people on the planet (this is why we make great teachers), but those traits have often get us run over with long, unpaid hours, little to no yearly raises, increased health insurance expenses (since we have the time to go to the doctor), ridiculous political mandates that have no benefit for the kids just brings about more paperwork. Sometimes I think we do not even take ourselves seriously in an effort to be humble. But when schools were shut down, we stepped up with innovation and new ideas-quickly. This is our time to be heard,show our value, model our professionalism and gifts/talents. We do this with our actions and being willing to have the hard conversations in love for the kids.

The pandemic knocked us down, but we got back up and are now stronger and for the first time seen. The world is watching! This is our time and we are ready!

Biopsy Results

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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.

Biopsy is In…

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…but I have to wait until Wednesday to get them.

Cruel right?

We have them, but you must wait until our appt.

As I wait patiently I want to shout out the amazing people that loved, encouraged and made me feel seen. From meals, to gifts, to childcare, to texts (they know not to call), to prayers…this is community! This is Jesus. This is love. This is the church as Christ designed it to be-His hands and feet.

Mullet Vote

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Do you like voting? Do you like mullets? Do you have a Facebook?

Well, as a teacher, I support all things including bad haircuts. This is a student I will have this year, so if I have to see this haircut every day might as well help him win.

Just click the link at the top. Click the post. Count 29 mullets down. Like the pic that looks like this-he is a sweet kid!

We can discuss why mullets made a comeback and how to stop it on another day. 🤣