Lupus is sneaky. It mask itself as several diseases. It is hard to diagnose, has no cure, and even more challenging to treat. No one experiences Lupus the same way. No doctor has quite figured it out. It is your body attacking itself.
Fatigue, joint pain, rash…the main symptoms, but there are so many more! Some that only appear when you get sick. Getting sick is tricky because it looks like a Lupus flare, but could be so much more just hard to tell.
So hug your friends with autoimmune diseases. Their pain and hurt is real and hard to share since they do not look sick, but feel sick all the time. Their good days are some of your worst. Stress is a trigger which some jobs and relationships are stressful all the time. Working out helps, but also makes you even more tired. You.just.can’t.win.
You have it long enough and you no longer want to complain, so make sure they do not have to…just love on them all the time.
Well, after lots of blood work and co-pays and appointments…we have a few answers.
1. I had pneumonia. For a Lupus patient, pneumonia is dangerous so that is likely the infection my body was fighting so hard to fight. Since antibiotics, it has calmed down significantly.
2. Did not have HIV, hepatitis, thyroid issues, allergies. Good to know!
3. My CReactive Protein was double signaling inflammation…we knew that so now getting to the root.
4. Waiting on the Celiac Disease test and for the rheumatologist bloodwork to come back. This doctor does not believe I have RA, but does see the Rayneuds, Scloderma and Lupus is highly active. Also needs me to get an eye appointment.
This is why Lupus is so tricky. It masks itself as so many things that baffles even the best doctors.
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.
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!