Lupus Linda
Life was just crazy. Moving across the country, starting dental school, adjusting to a new life was overwhelming. At many points in fall of 2018, I just felt like shit. I blamed a lot of it on grieving my dad's death, and probably my body catching up after running on adrenaline for 2 years.
October comes, my family comes to visit, I am exhausted. I feel like I can't keep up, but I again, blame it on grief and stress... which I do think was contributing to my problems. (yes, those are fake dead bodies hanging in a tree... kirksville man)
A few mornings in a row I wake up with very sore wrists. I can barely move either hand and assume I slept really weird. I have also been cutting out a bunch of tulle for a craft project I'm in charge of and think that could be part of it. Every day I am feeling more pain in other joints. My elbows, shoulders, knees, ankles, individual fingers. I spent hours in the bath, the only place I can get any relief. I am also so exhuasted. Some days Logan leaves for school and I just sleep the entire day. I can't put my finger on it, but it seems like more than grief.
I spend a lot of time googling, and came to the conclusion I have rheumatoid arthritis. I thought this was absolute worst case scenario! Logan was worried, I was worried, and was getting sicker by the day. I didn't tell anyone how I was feeling, I was worried about stressing my mom out who was already dealing with a lot. I finally decide to call my Aunt Wendy and see what she thinks, she agrees it sounds a lot like arthritis and thinks I should probably go to the doctor. I decide to tell my mom I'm not feeling well and will be going to the doctor, hoping for some answers.
It's November 19th, 2018... I feel so sick. I get into ATSU's clinic to see a family doc who is in our ward. I explain everything and he isn't super helpful but agrees to draw and run an ANA (autoimmune), thyroid, and RA (rheumatoid arthritis) panel. Giving blood makes me extremely nervous. I've even told my mom I wouldn't want to have a baby for the reason of blood draws. She blows both veins and I want to die!
Logan is supposed to be in Kansas City tonight for an Army exam in the morning. So after the appointment we hit the road for the 3 hour drive. I am feeling sooo terrible! We finally arrive to be told it was never scheduled and we are there for no reason. I guess the only perk was being able to get new tires on for winter.
About two weeks later I go back in and meet for the results. It's a waste of time, he tells me my ANA is positive and because it's positive I will need to see a rheumatologist. My pain is still crippling. My wrists take turns feeling so stiff they might crack off my entire hand. He doesn't know what to think of it, sends me off for a wrist x-ray and a referral to a rheumotologist. The x-ray showed nothing, and the soonest I could be seen was February! 4 months away!!
As the next two weeks go by the pain is amplifying. I've broke out with a rash across my cheeks, and assume it must be dry skin from getting in the bath tub 23/24 hours a day. I'm frustrated and terrified at the idea that I have to wait almost 3 more months to be seen.
Dec 19, 2018: I'm back in the docs office begging him to run any test he can to try and narrow things down. At this point I still think it is RA, he failed to mention that came back negative with my first labs. He agrees to run anything he can think of autoimmune wise and tells me they will make me run it again when I see them. I do not care, just help me. He sends me over to the hospital lab with a sheet a paper full of things to run. Thankfully by this point Logan is out of school and meets me there. I give the lab slip to the phlebotomist and she just looks at me, she has no idea what to do. She starts googling what tubes to take, etc. It feels like forever but she finally draws all my blood and it is a ton. I'm feeling very hopeless. I feel absolutely terrible, if we can't figure out a solution I will be devistated. He writes me a prescription for prednisone to see if that helps, it will give us another idea what could be going on.
I don't expect to hear back for a week or two. Christmas is approaching and I'm not very confident Kirksville could even get my blood tested correctly. I start the prednisone and we decide to drive the 30 minutes to Macon for some dinner, a break from our house and maybe a distraction to our current reality.
We are barely leaving when I get a phone call from my doctor. He's alarmed, usually his nurse just calls me. He says your blood work is off the charts, your inflammation is sky high, I'm 99% sure you have Lupus. My head feels rushed what? Lupus? The disease that Selena Gomez has that took her kidney? Shit. This had never crossed our radar. He's been in contact with a rheumotologist at Mizzou and they need to see me tomorrow. We continue to dinner, googling the entire drive.
I feel so overwhelmed. It went from 0-60 fast. Logan's last day of the semester is tomorrow, and he has a final... he starts sending emails and so he can come with me tomorrow. Mizzou is about an 1.5 hour drive away from us in Columbia, MO.
We meet with an NP and she runs the same labs again. She also decides to cut my predisone dose in half, we later find out just how bad of a call that was. We make a plan to meet back here Dec 31 and go over labs again to make a plan. I see my labs through the patient portal in a few days, and sure enough they very blantantly scream Lupus. We learn the rash across my face is called a butterfly rash and is a huge Lupus marker.
For a quick education moment - What even is Lupus? What does it do? Is there a cure? Who gets it?
Lupus is an inflammatory disease caused when the immune system attacks its own tissues. Lupus (SLE) can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Why it hatches out, is still a mystery but they think it can be one or a combination of 3 things. 1) Genetics 2) Trauma + Stress 3) Overload of Estrogren . Most Lupus victims are women, and it usually hatches out in child bearing years. How many years on average do you think it takes to diagnose someone with Lupus??
Lucky for me, I likely had the perfect storm of all 3. My dad in his late 20's started getting really sick without any reason. His ANA would always come back positive, his red blood cells would be misshaped, and his ability to hold onto B12 was next to nothing. May 2016, he went to another rheumotologist in Provo to try again to see what was going on. There was never a solution before he died. I'd like to think we would have been able to bond over these non functioning bodies. :) But, he would probably tell me to toughen up.
Prednisone is rough. It makes you hungry, irritable, and sleeping is impossible. I'm thankful the inflammation is down, but it comes at such a cost. A common lupus drug is plaquinel. It's used to treat maleria, they have no idea why it works... but it does! The only downfall is it can take up to a year to fully work. I will also need to get my eyes checked yearly because it can cause deposits on your eyes. Thankfully I have no side effects!
Flash forward to March 2019... because the NP did not do a proper taper, it's been difficult to really get the inflammation down. I'm feeling pluritis, inflammation of the lung tissues. It feels like friction when I am breathing. We get a chest xray and hit another round of prednisone. Starting at 40mg of predisone and tapering down for months almost killed me, I have never mentally + emotionally struggled so bad in my life. I'll have to be very desperate to try that again.
Joint pain is my biggest complaint... it is relentless and drives me mad. A common treatment is methotrexate... a chemotherapy drug. Part of me is ready to look into having a baby but I feel like I need to give this a shot first. Once I start, I have to be off of it for 3 months minimum before I get pregnant. It's a big commitment.
The care I recieve in Columbia is garbage. My mom attends a few visits with me that Logan can't come to and she is terrified. But I don't really have any other choices. Her personal favorite is their MA in the hoodie ;)
I decide to give methotrexate a try. It's either a pill or shot once a week. I opt for the pill and decide to take it Thursday nights. It makes me sooo sick. I feel like I finally get recovered by Wednesday the next week to take it again Thursday night. It is hell. My hair starts thinning, sores start hatching out in my mouth and on my head. I think it is helping my joint pain? It's coming at a large cost. One of Logan's work study friends knows I'm really struggling and hooks me up with my first bottle of CBD!
July 2019 we make a trip to Utah for a few weeks over our summer break. I start having a terrible cough without any sickness symptoms. By the time we get home I am coughing nonstop. I drive down to Columbia to have a doctors appointment and ask what they think. It's brushed off, I have another chest xray taken and and I drive the 1.5 hours home.
The cough was getting worse and worse. After some googling we realized there can be a very adverse reaction to methotrexate after 3-4 months that is literally a horrible cough. It eventually causes lung damage, the only way to really get it to stop is to stop taking the medicine. So I stop taking it and the cough still sticks around. We eventually get into contact with a doctor in Utah that helps us get an MRI of my lungs done to see what's going on. There were a few spots he wasn't sure what they were and gave me a steroid inhaler. After months, it finally went away.
In 2022 we find out my severe adverse reactions to Methotrexate were caused from a genetic mutation called MTHFR. This is something that could have been tested for with a simple cheek swab.
There is an idea called the Spoon Theory that is commonly used when referring to living with an autoimmune disease. The idea is you have 12 spoons, and everything you do deducts spoons. You have to be very mindful how these are spent each day. This image does a great job illustrating this principle. I think everyone could benefit by implementing this idea into their lives and not doing more than they have spoons for.
Learning this new normal has definitely had it's moments of frustration and many tears. Lupus has taken away my ability to be in the sun, have a painfree day, or even manage stress effectively. The best part is we have both learned how to be an advocate for yourself. Sure, doctors are helpful and knowledgable... but no one knows your body like you. Pushing back, researching, demanding is literally how we were able to have a successfully pregnancy. I am so thankful I have found doctors in St. Louis who trust and value my opinion.
As for now, I still take medication every single day, and will for the rest of my life. It keeps my organs from breaking down and my immune system quiet. Eventually when I am done breastfeeding I hope to try the only Lupus drug out there called Benlysta.
Until then, I'll try and keep enough clean spoons to stay functioning. :)
ps it takes on average 11 YEARS to get a lupus diagnosis.