Tag Archives: Lupus

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.

Looking sick vs Being sick

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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.

Teacher Struggle

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I want to start by saying that this year for me is WAY better than last year, so I am thankful. Last year juggling virtual teaching and student absences while trying to maintain a gradebook was intense. I will always be grateful for my mental health this year, however teachers across the country are abandoning education at a massive rate. I struggled to put into words why…but then a teacher I follow on Twitter said it perfectly…

The teaching game has changed, but the mindsets of those making the decisions and laws have not. They want to “catch up” kids to make them what they use to be and these kids are not what they use to be. Families have changed, education has changed and now laws need to change. The stress being put on teachers to test and perform is breaking our spirits as more hours of tutoring, documentation and building up their SEL is exhausting. I made this TikTok last year I think of one of my favorite Christian songs called Truth Be Known. It sums us up well…looking good, but feeling weak.

https://vm.tiktok.com/TTPdkM82sU/

God is my source of hope and strength so I know my foundation is firm. I have endured this business for 20 years so I know I can endure this valley, but those that do not know any different are walking out at an alarming rate. I get it. I hate it, but I get it.

On another note, wow how Lupus has changed my hair. No clue when my hair began to fall out and thin, but seeing my hair in this Tik Tok is shocking…long, full of volume…this is it today

Not without hope, but definitely not what it was. Crazy how a medicated auto immune disease can do that. My devo today said God has a purpose for my broken body and I am putting all my faith, hope and love that it is true.

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!

150 check-ins

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150 hours of exercise!

Love we celebrate consistency and commitment. Celebrating better mental health. Celebrating doing something to help my Lupus…exercise helps! Celebrating dropping two sizes…never intended to lose weight and need to gain more muscle…but it happened so may as well celebrate it. Celebrating confidence. Celebrating doing something for me!

My workouts are my time to choose myself. Thankful for 150 today!

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!

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!

Vanity over Sanity

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It is officially 2020 and it seems that everywhere you look it is about weight lifting or weight loss…getting thin or getting bigger…going to the gym or going to the grave….everyone has an opinion. Something I have learned from being married to a man that seems to also be married to the gym is that the better they look…the more insecurity there seems to be. I am not saying everybody, but surprisingly more people than I thought struggle with this idea of getting older, getting fat or getting behind. Some go to shortcuts to create an edge through shots or surgery or pills etc. All of that leads to a quick fix for the moment, but if the mind is not right the self doubts will always come back. In short, it seems some choose vanity over sanity and the issue does not seem to be disappearing anytime soon.

My husband and I argue about this a lot because with Lupus, I need to work out, but I always feel so tired. I always feel like if I had an extra hour in my day it would be for anything else than the gym. However, what I am finding is I actually do feel better whenever I get in there. I am not like my husband with the discipline to go at whatever cost, but I have found myself trying to make it more than I ever had previously. Something about the pre-workout, the right music, the right protein shake and being by myself in the gym excites me. There are all kinds of workouts, but I am still a good old fashion gym rat through and through. (Just do not check my attendance please!) Here lately my go to has been nutrition shakes that cost half my salary, but make me feel like I am putting forth effort to have that beach body by July.

If you saw me you would likely roll your eyes that I am even writing about weight loss as I am a small girl, but my issue is to turn fat into muscle and not look like the wind could kick my a@#. It is true…my arms are weak, but my mind makes up for it. I pray at some point that we can all get to a place of appreciation, of self check when we need to get it together rather than others opinions deciding for us, a place where vanity and sanity can coexist and aging will be just as sexy as Carrie Underwood’s legs. But until then my plan of action is to tell myself and others they are beautiful and worthy and enough. To stay healthy for life, to stay emotionally and mentally grounded for the good of your well being and be okay with the person God created whatever phase of life you are in. 2020 will be the best year yet!

Lupus Limits…But Does Not Stop

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I must admit I am one of the fortunate ones living with Lupus. My symptoms are mild, the meds I take are working, I was diagnosed quickly, my vital organs are unaffected; seriously, I am fortunate. My Lupus mostly involves my nervous system, my endocrine system and reproductive system. All those systems or words I would have never known before my diagnosis so basically my nerves, blood and ability to have babies. When I flare and I do weekly, I get fatigued due to chronic anemia, my joints ache like a 90 year old man, and my fingers turn white or purple. Right now my flare includes Pleurisy which means the lining of my lungs are inflamed…the sun is my enemy. Through it all I am grateful because my God has used it for good. This disease brought me a child through adoption that I would not have ever met, the sick days help me to appreciate the healthy days and my experience has helped me to encourage others going through similar things. To be in my low thirties with a chronic illness triggered by such common things as the sun and stress is intense, but I am alive and choosing to stay alive (there are some flares so bad I have felt like death) and choosing to live my life rather than let it live me.

Insert soccer.

When I was being diagnosed I told my doctor I played soccer. His response: not anymore. He went on to tell me that my blood levels showed low iron and chronic anemia so any major physical activity was dangerous. I took a few games off, but continued to play. The fatigue was intense after sunny games but we always had subs so it worked. However in the fall of 2016 I was in a major flare and for the first time in 15 seasons I had to say I could not play. It was defeating as I knew I was really sick to skip soccer. 

That was 2 years ago. I probably felt good enough to play again, but new players join and your team changes.  So I was not asked the next season and then I think the team took a season off so when I got the text to play I considered it. My biggest concern was that my lungs are inflamed right now which feels like a heart attack while resting and like an asthma attack when running-not too smart to say yes, but it will go away.  I also knew it would be hard after not playing two years so I had to speak to my hubs since he would be watching the kid and me if I get sick, but when he cheered me on I went for it.

Last night was the first game and it felt good. I was nervous all day, resting my body, drinking water, taking medicine…but it all felt good.  My biggest fear was my inflamed lungs and they were tight after long sprints, but two subs on the side could be called in at any time.  We won and I got some good touches, but most importantly I played. I was fearful two years ago that I never would again. So unsure if it was a good idea that I kept it a secret so no one could talk me out of it. But I feel okay the day after and since the games are at night, I think swimming will kill me before soccer 🤪 

Lupus does limit me, but it will not stop me. Soccer is what I do for myself. On the field I feel my sexiest and my mind is cleared.  I feel badass to be 38 and still playing. The best part is I challenge my mind and body and grow closer to the Lord as I praise him for the chance to show good sportsmanship and meet others with the same passion. Today I am grateful to be a soccer player living with Lupus again. My call of action to those without chronic diseases is to go out use your body. It is a beautiful thing of science and should not be wasted. Do not waste your health!