Hello. I'm very good at these intro posts. There always seems to be too much to say. I was officially diagnosed with PSA this year, 2014, but have had joint and skin problems since I was 4. My parents didn't seem too concerned and never took me to the doctor. After doing my own search, I assume I had juvenile psoriasis and arthritis. In my mid 20's the pain and skin problems became bad enough for me to go to the doctor. Not much could be done since I didn't have many symptoms. Just skin problems and pain. I given strong anti inflammatories. After the birth of my son, things went down hill. He was born 2 months premature. The stress form that experience made my psoriasis come to a head. I had patches everywhere, worse then ever before. I finally saw a dermatologist and she confirmed the psoriasis. She asked about joint pain but since I was breastfeeding, she wasn't sure if there was anything I could take. Fast forward 4 years later, and two failed pregnancies, here I am. My body is fighting me everyday. The psoriasis is under control but not the arthritis. It's in every joint, even the tiny bones of my feet. My back, and knees are the worst. Sometimes my hips. I am currently trying Stelara and using Tramadol for pain. I also have trouble sleeping and have chronic fatigue. I am not the same person I was 4 years ago. I am 32 and I feel so very old. I know many people have it worse then I do, but I have been in pain for so long. Sometimes I get so tired of the pain. It's like a constant companion. Always nagging you.
On a lighter note, I used to own a greeting card and wedding invitation company. I love card making and paper crafts. Also, all British style costume dramas. I read when I can, wish it was more. Love painting, but I'm not that good at it. I am an organization nut. I live in Texas, USA.
Welcome, Amielynn! As so often happens, I was nodding “yup, uh-huh, mmmm…” as I read your introduction. You are in such good company here, new friends that “get it”. It sounds like you have a rheumatologist who is pro-active, and who believes in aggressive treatment. Thumbs up!
I hope that you find this a great place for support and information. You really have come to the right place.
Welcome Amie - how familiar your phrase “I feel so very old”… You’ll find lots of members on here with similarities to your story, its a great place for sharing and information.
I loved your description of the pain as always nagging you, that really resonates.
I feel old and love British costume dramas too! Amazon Prime has been a great investment for me.
Welcome to the club, it’s extremely exclusive. This disease has definitely made me feel ancient, so you words read just like mine would. You don’t have to be alone anymore.
Thank you Jen and GrumpyCat (LOve the Name!). I am trying to find a new normal now. I stay at home with a 4 year old and it really wears me down. I love him very much but I can't wait for kindergarten :) Just so I can rest a bit. I still want to be supermom but I can't find the strength. So hopefully for me, I can find peace, acceptance, and some hope.
Amie, I have a 4 yo girl, and most days I reckon it is easier to go to work! They can be so much fun when you have energy yourself, but the fatigue that goes with PsA kind of saps the type of patience needed to enjoy them fully
I really hope you find some treatment (and the new normal) that gives you back your balance a bit. Enbrel and Humira have been lifesavers for me.
In the newbies section there is a cool article called “The Gap” written by Seenie - hopefully you find your way out of the gap soon!
Thank you Sybil. My son is my world. If it wasn't for him, I think it would be harder to make it through the day.
I do love our classic American novels, but the British ones are my favorite. I majored in history and loved British and Russian history. Russian novels aren't as good :) (no offense to Russians)
Wow it’s like I was reading my own story!! We also have a lot of similar interest! I started art classes 2 years ago cause I love being creative but wasn’t good at all!!
I have also suffered with psoriasis since birth and my parents would often say ‘I wander if you don’t have arthritis’ when I was young but they never took me to any knowledgeable docs as they did not know it was possible for a kid to have it.
I am also on tramadol for pain and then Enbrel. My psoriasis was under control when I was on methotrexate too but had to stop it as my husband and au would like to start our family. I am turning 30 in a month so the clock is ticking!
It is sad that you have had this so long and had all your troubles.
I was thinking how they might diagnose us by organization!
Long before I knew what was going on, I had my whole kitchen indexed and alphabetized.
I only put things in the upper cabinets because my knees were bad and I was 32 then.
And since I got -- kind of--- out of it, fuzzy minded, with pain and fatigue and couldn't keep up with bill dates in my head I had set up auto banking before it was on the computer and scheduled it out for a year at a time. I did it just to release the constant stress.
We have our reasons, I don't like being organized and am not nerdy about it, just trying to get it done because I can't manage the way others do. Just a matter of energy and ability to focus with this disease. It is a good way to handle some things.
Hmmm maybe I should also start organizing things. I am like you Sybil just blitzing through things. But I have started to realize that it’s not working at all. I think in my early 20’s I still had enough energy for it but not anymore. Only problem is I am very bad at organization!! I always have the best intentions but never get to them. Seeing how much it is helping all of you I think I should make it more of a priority!
Nice to meet you too Nicolene. Good luck with starting a family. My son is my joy. We went through serious heartbreaks trying to have kids but it was worth it.
Nicolene said:
Hi Amie
Wow it's like I was reading my own story!! We also have a lot of similar interest! I started art classes 2 years ago cause I love being creative but wasn't good at all!!
I have also suffered with psoriasis since birth and my parents would often say 'I wander if you don't have arthritis' when I was young but they never took me to any knowledgeable docs as they did not know it was possible for a kid to have it.
I am also on tramadol for pain and then Enbrel. My psoriasis was under control when I was on methotrexate too but had to stop it as my husband and au would like to start our family. I am turning 30 in a month so the clock is ticking!
Hello Dot! Nice to meet you. I also get brain fog. I have to write everything down or I forget it 2 seconds later. We do what we have to do.
Dot said:
Hi Amielynn,,
It is sad that you have had this so long and had all your troubles.
I was thinking how they might diagnose us by organization!
Long before I knew what was going on, I had my whole kitchen indexed and alphabetized.
I only put things in the upper cabinets because my knees were bad and I was 32 then.
And since I got -- kind of--- out of it, fuzzy minded, with pain and fatigue and couldn't keep up with bill dates in my head I had set up auto banking before it was on the computer and scheduled it out for a year at a time. I did it just to release the constant stress.
We have our reasons, I don't like being organized and am not nerdy about it, just trying to get it done because I can't manage the way others do. Just a matter of energy and ability to focus with this disease. It is a good way to handle some things.
Just start small. Like a date book or even just a notepad to write ideas down. I dont have the energy to try and manage day to day items, so its nice to be able to write it down and move on. You dont have to be crazy at it like me, just do what helps you in your world.
Nicolene said:
Hmmm maybe I should also start organizing things. I am like you Sybil just blitzing through things. But I have started to realize that it's not working at all. I think in my early 20's I still had enough energy for it but not anymore. Only problem is I am very bad at organization!! I always have the best intentions but never get to them. Seeing how much it is helping all of you I think I should make it more of a priority!
Well, just came home for a short vacation to San Antonio. Man, it was a lot of work! My 4 year old son didnt sleep well, so I didnt sleep well either. I think if I didnt have the pain meds, I woudlnt have made it through the trip. And the walking! My goodness. Well I did it. I had fun. I am so very glad to be home.
Welcome to the club, it’s extremely exclusive. This disease has definitely made me feel ancient, so you words read just like mine would. You don’t have to be alone anymore.