Psoriatic Arthritis came into my life last year, but actually long before. October 29 is World Psoriatic Arthritis Day. I want to share with you what PsA is and how it makes me feel.
I want to get real with Psoriatic Arthritis. I don’t want sympathy because there are far worse things I could have. And, I am thankful for my health. But, I want to get real and show you, with my words, what is like to have this disease.
World Psoriasis Day is a day conceived by patients, to bring international awareness and a voice for the 125 million people who suffer with Psoriatic Arthritis and/or psoriasis.
What is Psoriatic Arthritis?
PsA is an autoimmune disease and a form of arthritis. It is closely related to Rheumatoid Arthritis.
Psoriatic Arthritis is an inflammatory disease that occurs in possibly 40% of people with psoriasis. But, you can get the arthritis part first.
This is important–I first noticed psoriasis right after my 40th birthday. But, I had a swollen, inflamed, painful little toe long before. About 15 years before. I called it my “big, fat, little toe” and if you know me very well, you know about this and the pain it caused me. I don’t know which came first, the PsA or the psoriasis but I am pretty sure the Psoriatic Arthritis was first. Usually, it is the other way around.
The important thing to note here: if you have psoriasis and any kind of swollen, painful joints–go to a rheumatologist.
October 29 is World Psoriatic Arthritis Day. #worldpsoriaticarthritisday Click To TweetThe earlier you start treatment, the better chance you won’t have permanent damage to your joints (this means your fingers might not look bent and crooked!)
To read more and learn more, read all about PsA here, on the Psoriatic Arthritis.com website.
Last October, I was diagnosed with Psoriatic Arthritis. (I wrote about my diagnosis in last year’s #write31days. Read it here) It was a day of sadness but also I was happy to learn what was causing me so much pain. One never want to hear a bad diagnosis. But I was in pain, in several places on my body and I knew there was something wrong.
Many times, the disease takes time to diagnose. My doctor knew immediately because of joint damage that was visible and the amount of psoriasis on my body.
“I did as much research as I could and I took ownership of this illness, because if you don’t take care of your body, where are you going to live?” -Karen Duffy
What does it feel like to live with PsA?
Pain. Daily pain. Chronic pain that will never leave me. My joints swell, throb and cause tremendous pain. When I say joints, I mean almost every joint in my body.
The worst and most visible are my hands and feet.
Besides being red, both pointer fingers swell, from tip to tip, and I am not able to bend them much. This is called a ‘sausage digit’ and is a tell-tell sign of Psoriatic Arthritis. The knuckle nearest my nail of my pointer, on both hands, is permanently damaged. The fingers are permanently in a bent position. My entire hands both swell a lot from the joint pain.
My feet are horrible, as well. Painful to walk or stand on them for long periods at a time. Swelling is common here, too. Sometimes, the pain in my feet are unbearable. This makes it hard to exercise. I can no longer wear anything other than Birkenstock’s. I own six pairs. They are the most comfortable shoes for me. And while I like the shoes, I miss wearing other shoes. Like most women, I love shoes and I now long for other styles.
Besides joint pain, I also have a lot of tendon pain due to the swelling in my joints. All over my body. This also makes exercise difficult.
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And then, all the other symptoms of Psoriatic Arthritis. PsA affects the entire body. The neck and spine, hips, eyes, nails, vascular system, ears, and skin. Of course the skin. Psoriatic Arthritis is basically RA with psoriasis.
PsA also causes depression. I call these my blue days. Thankfully, I don’t get them too often, and when I do, the blue days only last one day. I am lucky. My blue days are debilitating for me. I can only sit. I sit, and that is all. It is as if I am numb, my emotions anyway. Being depressed on my blue days, I stay home, and sit.
I have learned to give into these days. They rule. I think it is my body telling me to rest. Telling me to Be Still. I listen to my body and my blueness and I sit. I know this is the best thing for me to do on this given day. So, I do. It’s okay to not be okay.
Sometimes, I write on my blue days.
And, there is fatigue.
Being tired all the time is the norm for me. There is a theory that describes the tiredness. Not having enough spoons. I am a spoonie. A spoonie is described as a person that identifies with Christine Miserandno’s Spoon Theory. Spoonies are people who live with chronic illness. We theoretically measure our daily abilities much as one would measure the proper amount of spoons needed for an event or occasion. We sometimes run out of our spoons and come up short.
Because PsA is an autoimmune disease, I have to be very careful to stay away from sick people. My immune system is further damaged due to the medicines I take to help my symptoms.
And then there are the prescriptions. I take four prescriptions for my Psoriatic Arthritis. Some daily, some weekly and one is a shot I give myself.
Mornings are the worst. Getting out of bed takes a bit and it gets a little disheartening. I am too young to feel like this. But its okay.
Moving is best for me. Being still, in one position, causes great pain and stiffness. If my feet weren’t so bad, walking would make me feel a lot better. Biking is good, except I had knee surgery so I can’t do too much. And then, the biggest excuse of them all–that energy thing. I rarely have energy.
So, once again, I don’t want sympathy I simply want you to understand what it is like to live with Psoriatic Arthritis. Daily pain and discomfort. No energy. Other parts of my body with other problems. Occasional depression. No energy and a lot of prescriptions. That’s PsA.
Living with PsA is no fun but living is. This disease won’t kill me and I try to not let it ruin me. I have so much life I want to live. I am slower. I am not as strong. But I am still me and I am . I can fight through the pain and all the other stuff PsA throws my way.
Family support is crucial. My husband is everything and his support is so loving. He puts up with my complaining, without complaining. He helps me do so much that I need help with. My kids are incredible, too. They know what I go through and they understand it. I am scared they will have to deal with this crap someday. It’s hereditary and they are showing signs. That upsets me because I wouldn’t want to put this on anyone.
My parents are wonderful, also. Love and support me and I know they worry about me.
My in-laws are amazing, too. My mother-in-law has severe arthritis and she knows my pain and I now know hers.
If you know someone with arthritis, RA, PsA or any of the other types, please support them and love them through their pain. Support is everything.
I hope for you understanding of Psoriatic Arthritis on World Psoriatic Arthritis Day. I hope for you to see a doctor if you experience any of these symptoms–especially joint pain and swelling, accompanied by psoriasis.
Thank you for reading and allowing me to have a voice about how PsA makes me feel. This is Day Twenty-Nine of the #write31days writing challenge! It is almost over! I am almost done!
love and blessings~dd
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