My Story of Psoriasis and Psoriatic Arthritis
When I was 14 years old, my grandpa passed away. He was the first person I was close to who died, and it shook me to my core. My body reacted in strange ways, probably from the stress of it all. I became extremely sick physically, and I developed these weird patches on my shins. They didn’t itch, but they were raised and covered about 95% of my lower legs. I could shave my legs, and the bumps would temporarily flatten, but they would raise back up almost immediately.
Then, my hair started falling out in clumps. I had “knots” on my scalp, and chunks of hair would come out. My eyebrows and eyelashes fell out, too. My hair was bald at my temples and the itching on my scalp was unbearable. It felt like I had knots the size of peas or sometimes even lima beans. I could run my fingernail through the knot and still not feel it on my scalp.
That became my new normal. Over time, my hair, eyebrows, and eyelashes grew back. However, my legs remained scaly. Sometimes, my scalp would flare up and the patches on my body would get worse, but I learned to just deal with it. My hair became so thick that I would get headaches when I put it in a ponytail.
Over the Years
Eventually, my legs cleared up, and I didn’t have any patches on my shins anymore. Occasionally, small spots would pop up here and there, but nothing major. My scalp no longer itched as badly, but I still had excessive dandruff. My hair began to thin, but I thought it was due to postpartum hair loss that never came back.
Instead of staying on my shins, the raised patches started appearing on my arms, upper thighs, and even my face and eyelids. I was confused because no one would tell me what it was. There were many times I visited my doctor and asked for help. Once, as an adult, I went to a dermatologist, but since I didn’t “actively” have any patches at the time, she dismissed me and made me feel stupid. So, I just treated it with Triam cream until it went away. For my scalp, I used T-Gel and other medicated shampoos.
About 4 Years Ago
My scalp kept getting worse, the patches kept spreading, and now my feet hurt so badly that I could barely stand up. It was strange, but true. My shoulders, hips, fingers, and knees started to hurt, too. I have a high tolerance for pain, but the pain in my feet felt like being punched in the nose and wanting to immediately throw up. That’s how it felt every time I stood up.
I went to a podiatrist who gave me a steroid shot in my foot and told me I would be fine. #Liar.
I continued to press on with massages, hot water, special shoes, and chiropractic care, but nothing changed. My PCP literally said, “I call bullshit on what you’re saying.” Those were his exact words. So, why continue to tell people something is wrong when no one listens?
For About 6 Months
I developed patches on my inner thighs, and they spread everywhere. It covered both my thighs, groin, and stomach area. Also, it looked like I had been scalded with hot water. It was hot, raised, itched a little, and kept spreading. I called my same PCP, who said I would be fine and that it would go away.
#Liar, and he is no longer my PCP.
I tried everything: alcohol (which burned), calamine lotion, A&D ointment, oats, you name it, I used it. My feet were getting worse, and my scalp felt like fish scales. I started using a metal comb to scratch my scalp until it bled just to relieve the itch. Afterward, I would stand under the hottest shower I could find and scald my scalp to get some relief.
My hairstylist tried to help by giving me anti-itch/soothing shampoos and conditioners, but nothing worked. I even stopped using conditioner and coloring my hair, thinking it would help. #ItDidNotHelp.
Eventually, I Got an Answer
I found a new PCP who looked at my scalp and said, “I have no clue, but it looks like white powder and you’re losing your hair. You should be fine.” Then, I went to another PCP, and he said, “Oh, wow, that’s bad.” Super helpful, right? I tried explaining the pain I was feeling, especially in my feet, but also in other parts of my body. I couldn’t sleep, my head always hurt, my vision was blurry, and the pain was overwhelming. The rheumatologist I saw said it was all in my head and that I was wasting her time. #HatefulWoman.
Finally, my son-in-law told me that if I didn’t do something, he was going to take me to see a doctor himself and use his words with the PCPs.
I finally found a dermatologist who was willing to listen. He was in a town about an hour and 45 minutes away from me. I was skeptical, but when I arrived, the office was calm and everyone was kind. I met the doctor, who looked about 12 years old. In my mind, I thought, “Great, another person who will tell me I’m fine.” But I was prepared with my list, ready to dump everything on him in 15 minutes. Honestly, I just wanted someone to hear me.
That doctor sat and listened to everything I had to say. I sobbed. The pain was so intense, I was exhausted because I couldn’t sleep, and my scalp was so bad that I would have done anything just to be heard. He told me that my labs weren’t normal and that he was considering two possible diagnoses: lupus and psoriatic arthritis. Just knowing he was taking me seriously was such a relief. He took a biopsy of my scalp and said the results would be back in 14 days, and we would have a definitive answer.
36 Years and 14 Days Later
I finally got my answer! The dermatologist called and confirmed that I had psoriasis. I had to return for a follow-up appointment to discuss next steps. When I went back, he told me that not only did I have severe psoriasis, but I also had psoriatic arthritis. That’s why my feet hurt, my joints were swollen, my vision was blurry, I couldn’t sleep, and I felt constant pain. It all made sense now.
Praise God.
He started me on a low dose of methotrexate, and within two months, I began to feel better. My feet stopped hurting, but my scalp was still in bad shape, and my hair loss was at its peak (thanks, chemotherapy). I remember the doctor asking, “How do you feel?” No one had ever asked me that before. I was honest and told him that I felt so much better. He asked if I felt “normal,” and I compared it to being able to breathe out of both nostrils at the same time. We both laughed. But when I said I wasn’t sure what “normal” was, he increased my methotrexate dosage.
3-Month Check-Up
The methotrexate made my liver enzymes skyrocket, so I had to stop it immediately. The doctor put me on Humira (a shot) every two weeks. Now, I feel much better. My feet don’t hurt anymore. I still have some pain when I’m stressed, tired, or on rainy days, but it’s nothing like before. My scalp is improving, and the Clobetasol he prescribed is a game changer. It’s a steroid liquid that I squirt and massage into my scalp.
I’ll be sharing progressive pictures of my scalp in future posts. It’s not pretty, but I want people to know that they can feel better with the right doctor! Don’t settle for people telling you that you’re fine or that it’s all in your head. Listen to your body. For the most part, I’m better. On the days when I’m not, I keep moving. I drink water, rest, do exercises that are easy on my joints (I swim), and take care of myself. It’s okay to do nothing sometimes.
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