Tag Archives: auto immune

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!

Health Journey

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Today is a big day. Now that school is over and I can focus on me, this is day one of figuring out why I am malnourished and “anorexic” as the doctors say.

I noticed a major change in weight last year around March 2021. By June 2021 I was 96 pounds. In August, I had to buy size 0 pants-even had a size girls 16 that fit. Size hangs off me.

I have always been a solid size 6. Size 4 was my ideal, but I had hips and booty. Not anymore.

This was September 2021. Short, but thick hair. I could wear it down.

It is getting thicker, but still breaking and I have not cut my hair at all…so the thinning and length is all on its own. Weight loss, hair loss, and so much more means time to do some tests.

Pray for answers around 2pm today or at least a step in the right direction.

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.

Lupus and Keeping it Real

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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!

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!