My Story of Psoriasis and Psoriatic Arthritis
My Story of Psoriasis and Psoriatic Arthritis. When I was 14 years old, my grandpa died. That was the first person to pass away that I was close to and it shook me to my core. My body reacted in weird ways to, I am guessing, was the stress of the whole thing. I was extremely sick (physically) and I got these weird places on my shins. They didn’t itch but were raised and covered about 95% of my lower legs. I could shave my legs and the bumps would go down, but it was thick and would raise back up almost immediately.
Then, my hair started falling out in clumps. I would have “knots” on my scalp and chunks would come out, my eyebrows fell out and so did my eyelashes. I was bald, at my temples and my scalp itched something awful. It felt like, well, knots about the size of a pea and sometimes a lima bean. I could take my fingernail and dig it through the knot and still not feel it on my scalp.
That was my new normal. Eventually my hair grew back, my eyebrows, and my eyelashes grew back as well. My legs, however, stayed scaly. There were times when it would get worse on my legs or my knots would get worse, but I just dealt with it. I had so much hair that I would get a headache when I put it in a ponytail. It was super thick.
Over the Years
My legs eventually cleared up and now I don’t have any places on my shins. Occasionally, I would have spots pop up, here and there, but nothing big and my scalp really didn’t itch too bad (I did have excessive dandruff). I did notice my hair was thinning but I chalked that up to postpartum hair loss that never came back.
Whereas, typically, my raised places would stay on my shins, I started getting them on my arms, upper thighs, and even my face and eyelids. I was bumfuzzled because I didn’t know what it was and no one would tell me. There have been many times I have gone to my doctor and asked. One time I did got to the dermatologist, as an adult, and because I didn’t “actively” have anything on me, she blew me off and made me feel stupid. Since they were no help, I would just treat it with Triam Cream until it went away. For my scalp, I did T-Gel and other medicated shampoos.
About 4 Years Ago
My scalp kept getting worse, my places kept popping up everywhere, and now my feet were hurting so bad, I couldn’t hardly stand up. I know…weird but true. My shoulders, hips, fingers, and knees hurt. I can handle pain, as I have a high tolerance for pain, but my feet… It felt like when you get punched in the nose and want to immediately throw up, well that’s how it felt every time I stood up.
I went to a Podiatrist and they gave me a steroid shot in my foot and told me I would be fine. #Liar
Everyday, I pressed on with doing massages, hot water, special shoes, chiropractic care and nothing ever changed. My PCP literally said “I call bullshit on what you are saying.” Those were his exact words, so why continue to tell people something is wrong when no one listens.
For About 6 Months
I got my “places” on my inner thigh and it spread EVERYWHERE! It covered both my thighs, groin, and stomach area. It looked like I had had scalding water poured on me. It was hot, raised, itched a little and was continuing to spread. I did call that same PCP who said that I was fine and it would go away.
#Liar and he is no longer my PCP.
I eventually used alcohol (which burned) to dry it up, calamine, A & D ointment, oats, you name it, I used it. My feet were worse and my scalp felt like fish scales. I because using a comb that was metal to scratch my head till it bled to get the scales off because it itched SO badly. Once I did that, I would go and stand in the hottest shower I could and scalded my scalp to get some relief.
My hairapist tried to help and give me anti-itch/soothing shampoo and conditioner which didn’t help. I got to where I would even wash my hair because A) it hurt B) every time I washed it, WADS would come out C) I thought if I stopped using conditioner and coloring my hair, it would help. #ItDidNotHelp
Eventually I Got an Answer
I got a new PCP who looked at it and said “I have no clue, it looks like white powder and you are losing your hair, but you should be fine.” Then, I went to another PCP and he said “Oh, wow, that’s bad.” Super helpful. I tried to explain the pain that I was in because it stayed in my feet but was migrating to other parts of my body. I couldn’t sleep at night, my head always hurt, my vision was weird, the pain was horrible. The Rheumatologist said that it was all in my head and I was fine. I was “wasting” her time. #HatefulWoman My son-in-law told me if I didn’t do something, he was going to take me and use his words with the PCPs.
Finally, I found a dermatologist, not in my town, that gave me answers. Well, not immediately, but eventually. I drove an hour and 45 minutes to get to this place. I walked in and it is as fluffy as what it appears in that one episode of Grey’s Anatomy. Everyone was very nice and everyone was calm and quiet.
Setting Him Up for Failing
Because I have had such a hard time, I knew this was a waste of my time and I was planning on where I was going to eat for lunch. I met the doctor and he looks 12 years old. In my spirit, I was like “another boob to tell me I am fine.” I was prepared with my list because I was going to verbally diarrhea all the things for the last 36 years years in 15 minutes. Honestly, I just wanted someone to hear me and my story.
That man sat and listened to everything I had to say. He spent so much time just listening. I sobbed. The pain was so intense, I was so tired because I couldn’t sleep, and my scalp was so bad that I would have done anything just to be heard. He told me my labs were not normal and that he was toggling between 2 things with me. Lupus and Psoriatic Arthritis. That actually relieved me in some way. He didn’t do much but listen and took a biopsy of my scalp. He said the results would be back in 14 days and we would have a definitive answer.
36 Years and 14 Days Later
I had an answer! He called and said I 100% had psoriasis. I had to come back in to discuss what this meant and the next step. From that point, I headed back to the town this doctor was in and he asked me a slew of questions. I answered each one and he said that I not only have severe Psoriasis, but I had Psoriatic Arthritis and that is why my feet hurt, my swollen joints, my vision, sleeplessness, and the pain I felt were all attributed to that diagnosis.
He started me on a low does of Methotrexate and within two months, I felt better but still hurt and my scalp was still really bad and my hair loss was at its highest (thanks chemo). I remember him saying “how do you feel.” In that moment, no one had ever asked me that, so I was honest. I told him that I was so much better. He asked if I felt normal and I simply equated that with “is normal like being able to breathe out of both nostrils at the same time?” There was a chuckle coming from him and he said “yes.” I told him no, because I have never been able to breathe out of both nostrils and I didn’t know that was even an option but I was better. He quadrupled my chem.
3 Month Check Up
The chemo made my liver enzymes almost quadruple, so I had to get off of that immediately. He put me on Humira (shot) to take every 2 weeks. Now, I feel better. My feet don’t hurt! However, when I am stressed, I hurt. When I am tired, I hurt. Rainy days, I hurt but it is nothing like before. My scalp is better but he also gave me Clobetasol which is a game changer. It is a steroid liquid I squirt and massage into my scalp. I love that stuff.
On Wednesdays post, I will share some progressive scalp pictures. It isn’t pretty but I want people to know that they can get better and feel better with the right doctor! Do not settle for people telling you that you are fine and it is in your head. Listen to your body. For the most part, I am better. The days I am not…well, I choose to keep on moving and doing. Drink water, rest, do exercises that are easy on your joints (I swim), and take care of yourself. It is okay to do nothing sometimes.