Warrior Wednesday 2/2/22
Meet Geri
When I first started to get sick I didn’t tell anyone…
It was a mix of denial and hoping that I would eventually get better. But, every morning I would wake up and feel this radiating pain throughout my body. My joints hurt and everyday tasks became so painful. Soon I wasn’t able to do my makeup, open door knobs, write my name or even point without being in so much. Walking hurt so bad and I was walking so slow that elderly couples with their canes were passing me on the street. The feeling was unreal. I was only 27 and couldn’t fathom what this could be. I also downplayed it and thought this is just what happens when you get older and it will pass. But months went by and it didn’t go away.
In June 2017, I made an appointment with my PCP. I described my pain and she ran some blood work. Everything came back normal and she told me to stretch and exercise more. If the pain got worse to take some Tylenol. I was a little frustrated but didn’t know what else to do and left. A few weeks later, things got worse. I wasn’t able to lie down and sleep properly without feeling a super sharp pain in my chest. Sleeping was a struggle and I started sleeping on the couch propped up with pillows. I had shortness of breath when I walked. I needed to stop every minute just to catch my breath. My legs and feet then became so swollen that my ankles disappeared.
I went back to my PCP and demanded she run more tests because this was not normal. My symptoms were now clearly visible and exercise and Tylenol was not going to help. She prescribed me Lasix and thought that would help reduce the swelling. But that didn’t help. She also scheduled an ultrasounds of my leg to rule out a blood clot. Thankfully there was no blood clot. My legs were still super swollen and I could no longer fit into any of my shoes. Thankfully it was summer and I was able to wear flip flops. But, my legs and feet looked like I was pregnant lady about to give birth. I told my PCP to schedule me whatever tests and whoever because I wanted to get to the bottom of this.
As a patient, I had to advocate for myself. I knew something wasn’t right and I should have been more adamant in the first appointment. Each day my symptoms kept getting worse. Soon I was seeing a nephrologists, hematologist and rheumatologist. I go to a small clinic so all the doctors are in one place which made this easier. When I saw them they already knew my history and I was doing more blood work and getting ultrasounds, MRIs, CT scans, x-rays.
After all the lab work and scans, I got my diagnosis. They had informed me that it was lupus. They tried to explain as simple as possible. My body was attacking itself. My immune system couldn’t decipher the good or the bad cells. So far, it was attacking my heart, my lungs and my kidneys. I remember crying in the doctor’s office when she told me. I didn’t want to accept it. I was in denial and saw 2 more rheumatologists. I made them run the same tests again hoping for a different outcome. But, it was the same result.
No one in my family had any autoimmune diseases. So, this was all a shock. I had so many emotions. I kept thinking why me. What did I do to deserve this? I was only 27 and this was supposed to be my year. I didn’t want to be the “sick” girl. I didn’t want to be a burden to my loved ones. I didn’t want them to constantly worry about me.
There was a lot of trial and error in the beginning as to what medications would work for my body. I also needed to get a kidney biopsy because protein was leaking in my urine. With autoimmune diseases, it’s not a one size fits all prescription. What may work for me might not work for someone else. During my journey I have taken plaquinil, prednisone, cellcept, losartan, lasix and vitamin D. At one point I was taking over 15 pills a day. Thankfully today I am now down to 2 medications, plaquinil and folic acid.
Overall the medications that I was taking seemed to be working. I no longer had protein leaking in my
urine, I no longer felt any joint pain, didn’t have any shortness of breath, etc. But, not all of my labs were
normal. I also still felt very tired from time to time. I also noticed that I super sensitive to the sun and
the brain fog was the worse. My rheumatologists explained that I had pretty much plateaued and
this I guess was “my” normal.
Being a lupus warrior has been a whirlwind of an adventure. Never in a million years would I have thought that any of this would have happened to me. But, everything happens for a reason and I have adapted to it. Lupus has affected my heart, lungs and my kidneys. It has also affected my weight, my memory, my hair, skin, diet and my overall day to day activities. I was wearing masks even before COVID was here. My immune system is very fragile so any infection could send me to the hospital. It definitely is a hard journey to endure, but with the right medical team and support system it is possible.
Social media has also been a great avenue to meet other warriors who have lupus or other autoimmune diseases. When I first got diagnosed, I joined a few facebook groups and asked a bunch of questions and loved reading about other peoples’ experiences. It was great knowing that I wasn’t alone. As much as I love my family and friends, I sometimes felt that I couldn’t be 100% with them. They were healthy and I didn’t feel that they could really relate to what I was going through. My fatigue is not the same as their fatigue. They weren’t experiencing brain fog and taking so many pills a day. Even though these people online were strangers, I still felt very connected to them. I think that’s why I started my blog and Instagram page. I was at a stage now in my life where I fully accepted my diagnosis and wanted to embrace and interact and share my story with as many people as I could.
Follow Geri’s journey on IG @everydaylivinglupus
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