Category Archives: lupus

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!

To Biopsy or Not Biopsy

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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.

Disappointment with AutoImmune Disease

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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.

Who Doesn’t Have 30 Minutes?

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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.

Smaller chested brunettešŸ˜‰

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.

Which Flare? What does a Lupus flare feel like?

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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.

January 1st is just another day…

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To me January 1st is just another day. Whatever vision you had on December 31st could be done then…why wait? Why be dramatic about January 1st…it seems like it is setting one up to get on this hig emotional high then fail. However, I do love graduations to reflect and endings call for new beginnings.

Four areas I want to examine:

Relationships

Relationship goals…lifelong friends where you can be vulnerable and fail, but they pick you up.

Spiritual Habits

calendar of praying for a child

Health-mind and physical. I am hopeful to get answers to my weight loss, gain some weight, and not let inflammation bring me down.

My CG trainer and my spin class teacher- mix up the workouts!

Reading-both to grow and for pleasure

Bible Recap Reading Plan

I see these four areas as important to me and areas where I can grow. Work is important too and I have goals there…but at my stage of life…so much time is spent on making a name for myself as a teacher that it is exhausting. Sometimes I just need to live my life and bring that to the curriculum I know.

Teacher friends
Always a learner

My school family!

So today, give yourself grace. Notice the baby steps to be better, but do not suffocate yourself with strict guidelines. Enjoy the journey!

Be you and embrace it!
Appreciate where you are! Some may see this as being complacent but I see it as being content. You are enough!
I love hearing feedback from people I trust, but you cannot make everyone happy.
Move forward afraid.
This is a fun tool to track exercise or books read or classes attended…

Happy 2022. The year I blog until I get busy again!

The face I make returning to school after a long break!

Healthy Changes

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So over the past few months I have continued to lose weight without trying. Sounds awesome, but not when you look sick and you are down to a size 0 and under 100 pounds. Only in small outfits does it look sexy…in most clothes I look ill. So I have had to pause Camp Gladiator so I can visit doctors and figure out the root. When you need every calorie, you have zero to burn!

So far I have been to three doctors and received an ultrasound of my thyroid. Gastronologist is next along with a high protein diet, delivered meal plan so I snack all day and eat and protein shakes from Crandall Nutrition. Again, blessed to not worry about losing pounds, but never Google unexplained weight loss.. it is scary! Join me in praying for some direction!

Finally, in all the day to day, I am leaning into my self. Put a pause in working on my relationships, and am focusing on God and my mental health. Sadly, I tend to lose me in us and it is time to look at who God says I am.

Turning 42 flipped a switch. Who am I? Where do I want to be in a year? Who do I want by my side if I have to battle a deadly disease tomorrow? No time to question loyalty…I need to know my team and live in it! Stay tuned for Julia 42.0!

In Lupus related news, I am now on Methextrate and off Plaquenil. Over time, my symptoms began to look more like RA and the joint pain became too much. I now have side effects of headaches and mouth ulcers, but feel better than ever joint-wise. Kinda scared to find out what 62 feels like since 42 already feels like 92, but believing in a cure and a good Lord comeback!

Camp Gladiator Update

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You can tell I am a teacher since I have the time for three posts in a day!

Last summer I tried a new workout to stay out of a pandemic funk, heal my body from the negative effects of Lupus, build muscle and please my husband who loves fitness (gotta be honest). A year later and I am still going strong!

I find I look forward to it most weeks and I am seeing results. I have built new friendships and look better in my jeans so there is a winning all around. Added bonus love is I am seeing results with energy teas and protein shakes…all of it together and I can see and feel the difference.

I am a small girl so I am hoping the protein shakes will help me to look stronger, but I love how I feel and that was my biggest goal from the beginning.

Camp Gladiator promotions are based on referrals and I have none so if you want to try it then I can get you the info! Virtual options make a workout from anywhere possible! Even if you have another workout you love, just keep moving and I will be cheering you on all the way. Summer body is no joke and bikinis can be brutal…we are all doing the best we can!

New Habits

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2020 was the year our trauma was exposed. The year we had a moment to step back and see what God was seeing. Busyness. Greed. Selfishness. Chasing after the wind to gain power, success, money…but losing family, health and righteousness.

2021 can be the year to repair what the trauma exposed. Relationships with family, clarity in our mission, a new way of doing things. A greater focus on what matters and what you really “need” to thrive. God’s way is simple, but costs us everything. God’s way brings life.

2021 is the year of new habits. New mindsets that 2020 revealed are needed. Mindsets of humility, grace, health, knowledge of God’s word, seeing trials as a process for change.

This year starts some new healthy habits that will be game changers.

1. Reading the entire Bible. God gives us direct access to Him and I am taking advantage of it.

2. Changing what I put into my body. More water specifically.

3. Discipline through CG workouts. Build muscle, grow lung strength, push yourself mentally and encourage others around you. Take an hour for yourself to take care of your body and grow your mental toughness.

4. Choosing family and quality relationships while putting down the things that keep us from it. My FB friends do not fulfill me more than family.

5. Financial freedom. Stop using things to buy happiness. Get out of debt .

I struggle being generous because I fear not paying bills, but the truth is I am spending all my money on things for myself to make me happier. Time to stop.

This year is the year to make changes needed now that God has my attention.

Lupus and the Corona Virus

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So I am one the many the media keep talking about with a compromised immune system. Do I look unhealthy or sick? Probably not. Can you tell that I have Lupus? Definitely not because you cannot tell from the outside. But I can tell. I know my Lupus by the fevers I get on a daily basis. I can tell by the aching joints, the rashes, the fatigue and twice daily necessary steroids to stay somewhat normal so I can make it through the day. I know by the year round anemia and decreased white blood cells. Truth is I may never know if I have the Corona Virus because I live with those symptoms daily. My life is all the symptoms especially in a flare. My blood work always comes back low and abnormal. Not a pretty picture, but my reality.

However, and I am probably in the minority here, my health is my biggest concern not yours or the public. I mean the public has a part by not knowingly going out with contagious diseases, but not going out right now where anyone can have been exposed and not know is all me. In the midst of all this I need to quarantine myself and not be out exposed. The truth is you do not know what to look for, but I do. So since my disease is one of those that is mysterious and easily covered up then it is up to me to stay safe. Reality is you would have no idea my immune system is compromised unless I told you. So I pray for all the people like myself that others eyes are opened. I pray my symptoms and yours stay mild. I pray all your organs stay active and well and that the good Lord brings a miracle quickly for not just this disease but sickness and disease everywhere including the heart disease of not knowing Jesus!