My Long List of Diagnoses
Last updated: May 2023
As a child I got sick so often I was on the verge of truancy. It got to the point my parents thought I just didint want to go to school, because doctors would just say "it's just the flu" when deep down it was so much more than just a virus.
Diagnosis from my dentist?!
I struggled with Reading, Math, so bad I had an IEP in both. I barely passed math every year with the extreme help of IEP teachers. At 14 I had my first locked joint, but no answers. I was scheduled for a yearly dental exam, my dentist was talking to me about the rash on my face and I told him I was seeing a doctor but all the doctor gave me was rash cream. If you get the butterfly rash you know that the rash is not the problem. My dentist asked if I had LUPUS, I had no idea what LUPUS was. So I went back to my doctor and asked to get checked for LUPUS, and sure enough I had 8 out of 10 symptoms and was diagnosed that day at 15 years old. I was treated for mild SYSTEMATIC LUPUS ERYTHEMATOSUS.
I was seeing a doctor in Children's Mercy for it, but was treated as mild. She said my pains were all in my head, that I was being a bit dramatic and even told my dad it's not all true. I was used to doctors telling me it's all in my head, but then my dad started saying it too. Eventually, with as many times as I told her she diagnosed me with arthritis and fibromialgia. I started seeing a therapist because of this, it made me depressed and I was diagnosed with PTSD, Anxiety, Chronic depression. My symptoms slowly kept getting worse no matter how much meds they changed.
Living with an invisible illness
Highschool came around and I wanted to do Volleyball, I absolutely loved Volleyball. I was PART OF SOMETHING! It was about 1 year in when my LUPUS got to the point I could not participate in the warm ups or playing, I would sit and watch rubbing my ankles or knees. Invisible disease, had people starring at me wondering what's wrong with me.
Finally finding support
I met my now husband, who helped me see the positive side, he helped me believe there's good in all this pain. When everyone thought it was in my head, only he saw the pain I went through everyday and stayed with me. I turned an adult at the age of 16, and moved in with him. He became my caregiver, medical adviser because I kept getting worse. At 18 years old I got dropped by children's mercy because I was no longer a child. Picked a VERY good reviewed rheumatologist named Dr. Douglas Gardner, he saw how bad I was, but it was too late to fix it. All we could do was help me back up, from stopping the meds I was on, to a whole new routine of different meds, prednisone to fight LUPUS, meds that actually worked and fought LUPUS better. It wasn't soon enough though, I was in a flareup.
Starting a new treatment
I was in a flare-up at the time he saw me and suggested I go to ER, so I did. I got big doses of steroids and monitored for a few hours. Steroid helped and I was sent home with a taper down prednisone. This kept happening every time we lowered the steroids, so we kept the steroids the same and I got on Hydrochloiquine. Sunscreen was my least favorite thing about LUPUS to be honest. I HATE the feeling of it on my skin and hate how long it takes to put on for the amount it lasts.
My lupus nephritis diagnosis
I got to taste how great it was to have no symptoms of LUPUS before COVID pandemic hit. At this time I was seeing a kidney doctor because or protein in my urine that was ordered to see my LUPUS activity was always high. Seeing my kidney doctor I was diagnosed with LUPUS NEPHRITIS, kidney disease. I was also diagnosed with kidney stones, still dealing with and constantly have them. I'm still figuring that out with a urologist.
Longing for motherhood
At this time it's my prime time age of conception, babies were NOT an option at my condition. Because my health I would die, and the baby would too. Especially with LUPUS NEPHRITIS and LUPUS flare. Me and my husband have talked so much about babies but it was a NO, so we stopped talking about having and started talking about other options. There is nothing wrong with adoption but I felt like something was taken from me, from not having the option to HAVE my own. Finally after 1 year of being treated for LUPUS NEPHRITIS my levels were stable, not worse but not better. This is when we brought babies back up in conversation to my rheumatologist! He told me that I was in better condition but with LUPUS NEPHRITIS it would have to be determined with my kidney doctor and the condition of my kidney. So we talked to my kidney doctor and he said if my kidney stays stable or better that it was POSSIBLE!! We talked to both of them and they concluded a visit with a (HIGH RISK FETAL AND MATERNAL MEDICINE DOCTOR). It was finally an option and our dream came true. But with VERY high risk factors, this part was gut wrenching. All the risks just kept adding up and I cried, the chances or miscarriage, stillborn, flareups were overwhelming. I held on to the POSSIBILITY so hard with my optimism, and my husband clutching on to my hands. It is still possible she said.
My COVID scare
One month later, I went into the ER straight after a kidney appointment because my blood pressure was really high, I was dizzy and numbness all up my left arm. Went in to ER having a heart attack, pandemic was in full swing and I was admitted into the hospital. I was put on a heart monitor and machines, labs every 3 hours, bed ridden. The worst moments of my life was getting worse. I got covid from the patient in the room across from me. I ended up getting it so bad, that I had pneumonia. I was hooked up to an oxygen machine because my oxygen was to low. My phnemonia got better and I was off the oxygen but taking breathing treatments to get all the mucus out. I ended up geting phnemonia scarring on my lungs, and prescribed an inhaler.
Navigating a bad flare-up
The LUPUS flare was bad enough I couldint get out of bed because I had rashes all over my feet and walking was too painful. I lost so much weight because I wasn't taking any nutrients in. I was drinking protein shakes because I couldint eat food because of my LUPUS mouth sores. I was in a bad flareup, I also lost the rest of my hair. I had to be wheelchaired to the shower, and helped to shower because I forgot how to. My brain had lessions. My body was shutting down and attacking everything. The doctors, which were neurology, Cardiology, kidney doctor, dermatologist, rheumatologist had increased steroids, kidney medicine and my LUPUS medications. Two months of all this and speech therapy to relearn to speak, physical therapy to relearn to get out of bed and in bed, relearn to walk to the bathroom. At this time I had a bedside bathroom.
Feeling isolated in the hospital
This was the HARDEST time mentally because of the pandemic, 2 visitors only, only certain times. My husband and my mother were my 2 visitors, family sent cards and flowers. I was dying and I could only see 2 people, that was so HARD. My husband was going to collage and working so he only had 2 hours to see me and my mom could only come 3 times withing the 2 months I was in the hospital. She took pictures of us because she didn't think I'd make it. I was 109 lbs, when I was 187 before being admitted. I cried so many times becuase I wanted my husband, I wanted to see him, or say goodbye one last time, I was so scared I wasn't going to be able to say goodbye. He stayed by my side the ENTIRE LUPUS journey, and I thank him everyday!
A slow recovery
I started getting better closer to 1 month and 1 week in, and everything got better. My heart was stronger and not being monitored. I would walk to the bathroom with no help and the rash was gone, I could eat real food! I had my soon to be sister in law, that lived in the town I was hospitalized in, drop me off coloring books, notebooks, and colored pencils to keep my occupied. She was so much help, because that meant so much as I couldn't do it myself and my now husband couldn't either. I bought her starbucks, because she loved coffee and that's what I could do. The day I was finally cleared to go home I had someone come in and talk to me about either going to a care center so I could be monitored at all times and I said no, I didn't want to be at another hospital. I wanted to go home, but they insisted I should to get the help I needed to be ready to go home. I was firm with my no and said I need to home, and that was that. So we agreed to check ins from a home care person to see how I was doing by myself and if I needed to go to the care house.
Finally returning home
I cried happy tears the day I waited for discharge papers because it was torture. I had to wait till my soon-to-be husband could come get me, I was so happy and anxious to finally go HOME. The second day I was home I forgot how to close a door when I was getting the mail. I cried with the door open starring at the door, my soon-to-be husband had to come shut it for me. That moment I realized I wasn't 100% ready to be left alone yet. I had a hospital at home care person stop by every week to see how adjusting to home would be. I did not end up going, because I was doing okay by myself, and with my soon-to-be husband when he got home from work.
I am grateful for my support system!
Fast forward 1 year today May 31, I am on disability, and a Scentsy consultant! My LUPUS is stable but in a flare up and we dont know when I will ever be in remissionas of now. My kidney levels are stable and we are talking about planning for children, planning to see the (Fetal Maturnal MEDICINE) DOCTOR again soon. To discuss how to prepare for conceiving a child! As long as my kidney disease (LUPUS NEPHRITIS) is stable or better, we can continue the plan stop (CELLCEPT) which causes Miscarriages, Still births, Fetal deformities, and Maternal death. I plan to start more steroids to keep me from flaring up more, and start prenatal! I'm beyond greatful for the people who stayed by my side, Beleived me and in me, and the care team that put my Health first before anything. I wouldn't be here today without them and my ROCK, my HUSBAND now for 8 years and 1 year married!
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?