Returning to teaching is never easy, especially since I am still struggling with an infection, enlarged spleen, kidney problems, and my voice is still shaky after losing it for 3 weeks! My Lupus body is fighting something. Cellcept suppresses my immune system, so it is hitting me hard. But I get one of the best jobs with 2 weeks off to rest and recover and I am grateful.
Laid up in bed because my coughing has put a pain in my side that makes it hard to move painlessly. Pretty sure it is inflammation creating tightness in my ribs, but boy it hurts when I cough! Thankful to have this week of rest and recovery.
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!
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.
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.
I feel like I am a success story with Lupus. One big reason is that the good Lord gave me mild symptoms and for that I am grateful, but another big reason is I have learned to live with it and know my place with this autoimmune disease. So here are the top five things I have learned after being in tune with my autoimmune:
1. What you eat matters!
This took me a while to accept but it is true. Certain foods (mostly processed) will send me into achy overdrive. It does not mean that I cannot or do not eat those delicious cheese fries, Cheetos or fried anything…but it does mean I know I will pay the price and honestly it is not always worth it.
2.Have less fear if the liquid is clear.
I had read somewhere that the darker the liquid, the more things added to it. No clue if it is true, but I have found the clear liquids do not send my body fighting as much as the dark. Coke, beer, sweet tea (why, God, why?) get me achy and fatigued, but if I stay with Vodka, Sprite or of course water then I can usually keep the party going.
3. Say yes to the mattress!
Who would say no to a good nap?? I immediately get sick when I live a lifestyle of less than 8 hours of sleep. Now life is busy so this is not always possible, but our bodies are made to need rest and we need to choose to listen.
4.Say NO to stress!!
As a teacher, stress is inevitable. A quote I read says “Teachers make more minute by minute decisions than a surgeon.” I believe this…so stress will happen, but I can choose to avoid stress whenever possible and I do. One way is I stopped watching reality shows or any show that is fighting just to fight…trust me this was hard…but Real Housewives or Mobwives just had to go. FB drama had to go too…I refuse to click on the video with the fight or add comments to the political posts going nowhere. In my marriage, when things get heated…I go to the word and prayer instead. Life in general is lived more peacefully when you know God is in control and has a purpose for you. Now, I am not quite at the place where yoga is more calming than painful, but I am sure I will get there.
5. FINALLY..Exercise helps.
This is tricky because overdoing it wears me out. Also, when I have already worked all day the last thing I have energy to do is go to the gym, but it helps. I will admit that. Probably helps with the stress and mind part of things, too. But I used to refuse to work out and now I make time for it. In the beginning, it is exhausting, but as you build stamina it gets better.
Now I am sure you are all reading and thinking duh! Even people without Lupus know eat right, get exercise, and rest will help the body…but here is the question: do you do it? Likely, a little but not all the way. I have learned I have to do it or I have no energy, run a fever and experience joint pain. No fun, right? So everything is a choice but my choice is made loud and clear with my body. I have learned to (finally) listen to my Lupus for a happier life!
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.
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!