physical P is clearing but emotional P remains

[peleblue]

I was feeling warm, supported, and supportive after reading the messages on the board and decided to share how wonderful this site is with my dad. I did and he said a few things that pushed buttons that have been pushed for years.

Here goes the venting:

Be thankful you don't have cancer - - - WHAT?!?!??!? I have no reply and the only thing running through my head when I hear this is SHUT THE F@#$ UP!!!!! He's right cancer sucks and he knows it because he's had it...but everytime I hurt I don't need to be thankful I don't have cancer

Don't cry or be angry, it will make the P worse - - - I cry and I'm angry because it hurts. Not crying only makes you feel safer, I still hurt ! I am allowed to be angry - - I'm angry for all the times that I felt less than a person because I felt so ugly, I'm angry for all the times people made statements that made me want to hide, I am angry for all the times it was 100degrees and I wore long sleeves and long pants so that other people wouldn't stare at me, I'm angry for all my sheets with blood on them, for not having pretty p.j's cuz they would get stained, for not being able to wear black, for having a dustbuster by my bed and cleaning up skin every morning, for leaving a trail of flakes, for not being able to look people in the eye because I felt that something was so wrong with me, for staying in when I really wanted to go out, for watching my friends go out on dates then get married, then have babies, I'm angry because no one should have to suffer NO ONE!!! I'm angry because I've been told that it's not okay to be angry.

The P is cleaning up- - - I was never dirty!!

I had Remicade treatment today, I think sometimes I just get really emotional afterwards and as the P clears from my skin I realize that I also have emotional P which hasn't cleared quite as well....I'm working on it.

Thanks for listening
Staceylee

[coachG]

Hi Staceylee....I totally understand you!!!............ I still say let's go to "grandmas"....feel better my friend!! :) (dustbuster twins)...lol

[kkellogg]

Staceylee:

I hear your rage, mama. I really do. We are tested over and over like a frying pan to the face - PEOPLE WITHOUT P WILL NEVER UNDERSTAND. I hate this truth - because it has forced me to lower my expectations of friends and family (suck factor 10). My grandmother always gives me the "you can walk and talk and you're not blind" rap. Zero thought. Zero understanding. Zero compassion.

I'm so sorry your dad invalidated you in such an intensly personal way. I often wonder if my own emotional pain manifested itself as P... or if the P ebbs and flows with my pain.

Here's the thing - you're clearing. F everyone else. Unfortunately, there are no breakthrough biologics for disfunctional family relationships.

Please know that we're all "here." Thanks for the brave post.

Love,

Krista

[draftmolly]

You have every right to be angry. Just because you're not dying of some insufferable disease like cancer doesn't mean you don't have pain and suffering of an equal degree.

There's only so many hours in a day to wear a brave face and then it's time to break down, cry, stomp feet, throw things and lean on friends. Next time someone treats you like that, tell them all the things you just told us and ask them if they would like to trade you places!!

Cynthia

[rsderrick]

peleblue,


Thanks for the post. I'm a 40 year old man who has been dealing with PA sinch I was 28. I have alway been able to cope with it and gaff everyone's comments of to stupidity. The P has not been as bad as the A through the years. That has all changes in the past 12 months. I would say I went from 30 coverage to 80 percent coverage and growing. People don't understand and I feel a lack of home training is partly to blame. My parents taught me better then to stare or ask stupid questions like "What's wrong with your legs? That one pisses me off the most. The legs were always the worst now it's the arms where the P is growing the most.

I am self employeed (Sales Broker) and I was having breakfast with my wife the other day. She started questioning me about my recent work habits. I must admit they were spotty at best. She started to grilling me about my habits and I stopped her. I explained that I was so overwhelmed by what was happening with my PA that it was hard to focus much less call on customer with a bloody shirt from the cracking of the arthritis on my back. Its bad when it soaks through a T-shirt or even the back of your arm where the t-shirt doesn't reach.

I hadn't even started explaining the flair I was experiencing with my A when I started crying...tears flowing down my face. Now I'm not the kind of guy that crys at much but I couldn't hold it in. It was a release of emotion that had been long overdue. Years overdue!!

Well my wife got it. She saw the pain I was in. It clicked with her. For this I am thankful. Then that day I went to my counselor which I started about 6 weeks earlier looking for help coping with all this. Again the tears flowed in his office when I started talking about it all.

Towards the end of my session he told me that he heard me and understood that I was in a lot of physical as well as emotional pain. He asked me to write a list of things that I was thankful for. I thought....I'm ****** of right now at God and everyone else I don't want to be thankful. I want to be mad!!!!

Well after I got over that attitude I did what he said. The truth is that I have PA and it sucks worse then anything I have ever had but the other truth is that I have tons more to be thankful for.

I have 4 beautiful childern that are healthy as horses. I have a good job that pays me well. I have a wife that loves me in spite of the PA and the list goes on but above all I have faith in my creator who cares for me and is making me stronger emotionally and spiritually through my PA although I can't see it sometimes.

The bottom like here is that even though we suffer humiliation, pain, irritation, depression and heartbreak we all have much to be thankful for. Just think about it.

Thanks for the latitude with this and allowing me to express my feelings.

Scott Derrick

[relax]

Well I’ve never cried over it yet but I’ve been so GD ****** off that I can’t think straight at all.

People just have no friggin’ idea what kind of pain my bones and muscles are in from my jaw to my toes.
My wfe - NO IDEA, My Mother – NO IDEA, My Stepfather – Not even close. I can just imagine how many people think I’m a lazy deadbeat. My house is falling apart, my car is falling apart, my finances are falling apart, my life is falling apart… How can I fix my roof when I can barely dress myself and hobble down the f***ing stairs every miserable morning!!!??

[pamiam]

I can relate to all of you and then some. I had PA and P for over 10 years but I could bare it, work, laugh, live. But I Looked good so people thought I wasn't sick no matter how bad I felt. Now, after having a baby, all that has changed. You can SEE that I am sick. When you are a woman and losing every hair on your body people can see that you're just not well. But emotionally, I could always handle the , Oh, youre ok, tough it out, because I too, couldn't see that I looked sick. I know this sounds crazy. I have always had psoriasis, but not extreme. Now, I have it all. Pain itching, no hair, no life.
My aunt is dying with cancer, and I hear, "at least you are alive." But I honestly don't want to be alive like this. It is so hard. I have nothing to look forward to because I am so miserable. I used to look like a barbi doll, now I look like something created for a horror movie. But you know-maybe, just maybe if I felt good and could do something physically, I could get my mind off it for a second, but I cannot. I cannot even clean my house, barely carry my baby, stand long enough to take a shower. All the things I once was I am no longer. I would never leave my house withut hair done, makeup, trendy clothes, and matching jewelry. Now I don't wear anything but lounge clothes. I cannot even look in the mirror. All my designer clothes, jewelry, perfumes, mean nothing . It is like I am in the ground somewhere. It sounds bad, but its worse. So no matter how bad you feel and how much worse people can make you feel because they donn';t know your pain-I DO.

Pammy

[relax]

I wish people could feel how I feel for just a couple seconds. As many times as I tell them, I’m not as strong as I look, It goes right over their head because I look fine. My stepfather shows me his hands and his knuckles do look worse than mine but the guy is constantly working and on the go and I know he’s thinking I got nothing wrong with me but my head. I try to explain my arthritis is much different from what he has.

My first Arthritis spell hit me like a ton of bricks, about 8 years ago, they thought I had Reiter’s Syndrom.
I woke up in so much pain I could not walk. I crawled on my hands and knees up the stairs and phoned my mother to come and take me to the hospital. My body had gone into shock from the pain, you can die from shock. My blood pressure was so low the nurse thought the machine was broke and got another one.

Hey Guys,

When you get really low there is no shame in asking for some help. I'm sure you are all tired of popping pills, applying ointments and just feeling shi**y!

But don't allow yourselves to become so depressed when there are medications out there to help you, whether you use them short or long term.

During the movie the Singing Detective the psychiatrist (Mel Gibson) tells Dan Dark (Robert Downey, Jr.) that skin disease is such a personl thing and that most people rely on some sort of medication for their depression. Add the debilitating pain of PA to that and you're living a nightmare. I have both!

It is so personal!! How true. We have so much to deal with.

Good luck to you all. I feel your pain.

[peleblue]

Thanks to all for your support and replies! The day seemed awful but turned out to be a blessing in disguise. I realized I had spent the better of 20 years not accepting emotional support from friends and trying to get people who lived with their own fears for me to really see what was going on. I sort of created my own hell in my mind. I felt that if I let anyone know how I sometimes felt inside that they would commit me, not love me, not think I was competent, etc. etc.! So after I wrote on the message boards I share my emotional pain and personal information with my sister and close friends. And they truly wondered how I managed things so well and were relieved to hear that yes I was in touch with my feelings because they were all wondering how I never seemed phased with all that I have been through. My sister also put a few other things in context for me. I can be grateful for the wonderful things in my life and yes be angry and upset at this disease ALL AT THE SAME TIME and it's okay! Of course I can, I should have known that.

So I want to thank all that support me and made me feel better and for those that need support, even just a little, I am here for you.
Staceylee

[draftmolly]

Well Staceylee..... your sister sounds like a keeper ;-)

[nla]

Isn't it ironic that sometimes it takes someone else to remind us that we are actually in charge of ourselves? Happy you are feeling better and even happier to hear you realize what a great support system you DO have!

Stay well...
Nancy

[kkellogg]

The more people I "meet" with p/pa, the more astounded I am at the serious toll this disease takes on all of us. What's more, I am at once horrified and relieved to hear the many stories of emotional breakdown, and indeed breakthrough that litter these posts. So many of us have suffered in silence. Somebody on the board wrote that p/pa is a very lonely disease and that is so true. Sometimes I don't know what is more debilitaing - the p/pa or feeling like you're screaming at the top of your lungs for help and no one can hear you - or bothers to listen.

peleblue: So glad you had a good talk with your sister and that you finally got it all out... the burden of p/pa is just so damn tiring. It feels so good to just let go...

Be well all.

Love,

Krista

[peleblue]

Thanks Nancy and Krista!
I don't know why but it did surprise me that others with P/PA break down also! I mean why wouldn't we all break down at one point or another for whatever reason?
Staceylee

[relax]

When I was a teenager I had a friend with PA, I didn’t actually know it was “Psoriatic Arthritis” back then, I just knew he had some problems but he looked OK and did normal Teen stuff, we walked around and chased girls, drank and smoked a bit. Every now and then I’d hear that he went into the Psychiatric Ward for a week or two. I just figured he had some problems at home or something, I never really connected it with his arthritis and Psoriasis. We lost touch, he got into drugs and was roaming around the country. I saw him was about 6 Years ago, he looked horrible, I think he was homeless, he looked like it anyway. He was asking me for a ride out of town so he could check into some rehab clinic or something. I was in town doing errands for my wife, told him I didn’t have time and that’s the last I’ve seen of him.

Now I have PA and I realized that’s what he was suffering with. I’m just beginning to understand what he was going through and I fear I could easily end up the same way. I’m sure every town has a few local dirty bums you see wandering around the streets. Take another look, it’s like they say, “ You think you know, but you have no idea”. Until you’ve been there.

Stacey,

Glad to hear you're feeling better!

Relax,

Thanks for that reminder! It's too bad our world is so dangerous and we can't offer as much help to others as our moms, dads, grandmas or grandpas could and did. I often wish I could do something as simple as just stopping to give someone a ride.

Have a great day!