ONE POSITIVE

[ouchyk]

Could you tell me one positive within yourself that you have experienced since having p/pa?

Thanks,
Karen

[jpr]

I have 2:

We had our local Arthritis Walk this past Sunday. I hadn't told many that I have PA. Because our company was a major sponsor of the walk, my boss asked if she could ask our department to create a team in my name. I reluctantly said it would be okay. I had 33 people out of a 36 person department plus their spouses and significant others walk for me. And in the meantime, another person in my department revealed that she has RA, but didn't know how to tell anyone. So while it isn't great to have PA, I found that the support that I didn't know I had around me reduced me to tears. Sometimes it just takes something like this to show you.

The other really positive thing is that it has reminded me of how important each day I have is. I never know how I'm going to feel tomorrow, so if I can walk it/hike it/climb it/survive it/hug it today, then I need to do it now, not tomorrow!

[Mybadgenes]

It has taught me acceptance.... took a long time...

With a disease that is *visible* it is hard.

I have other health problems that you can't *see*. Even though they might be more destructing one tends to be more accepting even though over time damage is being done. You see, I can't *see* those. I think my most major break-down at the doctor's office was talking about multiple auto-immune diseases. That was several years ago......I accept.

Juanita

[peggyb]

I'm sorry, but I can't find one positive thing to say about having P/PA. I have never been to a convention so I've never met any of you lovely people. I haven't totally learned to accept my lot in life, not yet. Yesterday, when I was lying in bed sick with the flu not two weeks after I got a flu shot, my little boy got in bed with me, touched my face, and said, "Mommy is sick. Mommy is sad. Don't worry Mommy, I'll save you." He started chanting this little mantra of his when I was sick in bed with PA a few months ago.

How can I say anything is positive about this experience? My son is never going to have a "well" mom. He got robbed.

[fred8631]

Karen: In a perverse way this disease has helped me -- become a little less driven, a little more appreciative, a little more mellow, a little more understanding, treasuring things a little more, and a little more zen-like. Fred

[Heatheranne1027]

I'm sorry, but I can't find one positive thing to say about having P/PA. I have never been to a convention so I've never met any of you lovely people. I haven't totally learned to accept my lot in life, not yet. Yesterday, when I was lying in bed sick with the flu not two weeks after I got a flu shot, my little boy got in bed with me, touched my face, and said, "Mommy is sick. Mommy is sad. Don't worry Mommy, I'll save you." He started chanting this little mantra of his when I was sick in bed with PA a few months ago.

How can I say anything is positive about this experience? My son is never going to have a "well" mom. He got robbed.

I am so sorry that you are going through all of this. Yes P totally sucks you are absolutely right. Though your son may never have a "well" mom he will have one that teaches him compassion, bravery in the face of sickness, how to deal with life when it throws you curve balls. A mom who teaches him that it's not what's on your skin that matters but what is beneath that matters the most. Sure you may not go out and throw a baseball for him but you will be there to cheer, to support, to love, to clean his scrapped knees. You are a "well" mom just not the kind of "well" mom the world has dictated. As long as you love him and tell him, as long as you support him and nurture him and give him a solid moral ground you are a well mom in my book. There are plenty of women out there that meet society's view of a well mom on the outside but on the inside they are a mess and not doing what is best for their child. So though it may seem that you are not a "well" mom your son loves you for the mom you are, his mantra is proof of that. He loves you and wants to take care of you and just wants to be with you. To see compassion like that at such a young age is truly heartwarming because it shows the kind of man he will grow to be and you made that possible, well mom or not.

I hope you feel better soon.

~Heather

[nyoki]

I am incapable of being embarrassed anymore. I've learned that it is a waste of time and after you've been thru what all of us have been thru you get used to taking off all your clothes and putting on those stupid gowns (that are impossible to tell front from back) and being poked, prodded, scanned and having people see you at your worst (sometimes in your most private of places).

I love my husband and I've learned over the years just how much he loves me and that there is nothing he won't do for me and vice-versa. I honestly don't know any "healthy" couples that have that kind of intensity and devotion in their relationships. I KNOW who my friends are. Their the ones that accept my crying-in-pain phone calls because I hurt so much and their the ones from whom I would accept that same phone call. Their the ones that understand if I can't make a get-together, party, outing.

I've learned how vital life is. I've learned to take a day off work when I think it is going to be a "good day" and spend that day w/ people I love. Work is important but my loved ones are more important. I've learned that euphoria comes not from drugs but from cessation of pain and being in a position to take total advantage of that.

I've learned not to sweat the little things. Most things are not worth getting really upset over. I've learned to forgive myself (and others) for the little things that are sometimes said or done that upset people but aren't really meant.

I'm sure there's more but I can only type so much.


ego sum non meus poena

[Re]

okay first thing Heather you said that so wonderfully, it just blew me away. These are the very things that hubby (charlie) and I have always taught our kids. We have always told them that a persons beauty is within. Wealth is not measured by your bank account (God know we are poor in that aspect) but wealth is what blessings you have. Kindness begat kindness. Like and care for everyone you meet until they give you a reason not to. (does not mean you trust them) Just treat them the way you want to be treated. I could go on and on and on... I can truely say that the positive thing about PsA is having all of you in my life and knowing it is okay if I stay in bed all day.
Re

[ouchyk]

There are some really great replies, Heather thanks for your post I was searching for something to say and you said it best.

Its hard to think of positives when your feeling so sh*tty. BUT I'm convinced positives do exist you just have to look for them.

By the way, this question was posed to me by another support group leader I went silent as I searched my brain for an answer.

Me ~ silent lol... :confused: :p :eek: :D

Karen.

[ouchyk]

and here is one from me...A positive..

I have really clean clothes....lol...why is this?

I put clothes in the washing machine, run out of energy, think eh, I will get to them later...then remember the next day, open the washer PWEW and run them thru again, so they get washed twice. :D

One of my positives, and I think it was mentioned here earlier is that I'm a lot more chill then I ever was and I don't sweat the small stuff, hell, I don't even sweat the big stuff...not to say I never freak out If I do I'm over it pretty darn quickly...

And most importantly I have made some incredible friends and without this crappy disease I would have never known them or have done traveling that I have or advocated so strongly for myself/others ...they enrich my life!

Karen

[jakesdad]

Well I agree with you Karen .. if it were not for Jake having P then i would not have found this site and the few friends i have met here that has helped me out.. And i say again.. Thank You..

On a positive note. Jake is doing well and if there was a positive side to this mess is Jake's chloesterol level is amazing low, not sure if it's from the Soriatane or what.. but my level is medicatedly low.. LOL

Have a better Day.

jakesdad

[RichJ]

hi karen,
to me my best one is finding this sight and all the friend i found. but the best is that i found polly. the love of my live.

have a good night all

richard

[AlaskanCartographer]

I have been a member of the National Ski Patrol for years. Last year I could not ski because of the PA. One day I went to visit another ski patrol friend
who couldn't ski because of shoulder surgery. We were sitting around complaining about not skiing and cursing our fate when his teenage son came running in the house and screamed, "you gotta help this guy out here."

We went out and saw a man crumpled over in his dog sled and his dogs all tangled up. We went over and saw a tree branch sticking out of his lungs.
Long story short, we gave him emergency care until an ambulence arrived.
The ER docs said that if we had not taken care of his sucking chest wound, stopped the bleeding and treated the shock he would have died. Actually if it hadn't been for the PA I would have been on the slopes and not there to help this guy. It did take two of us to get him stabelized. As for the pain and fatigue that kept me off the slopes, well, adrenalin kicked in and I was able to do all I needed to do with no thought of pain.

One year later and the dog musher is doing fine and my PA is as painful as ever. You just never know when the "bad" things in your life turn out to be someone else's blessing. Thats ok with me.

[Emsmom]

I can only imagine how awful it must feel to believe that you are not giving your child a healthy mom. But I would trade places with you in a heartbeat. You see, I have only very mild psoriasis. My 15 year old daughter, however, is another story. At the age of 2 she was diagnosed with arthritis. For the last 13+ years she has lived with the pain of arthritis. Medication (and lots of it!) has helped a great deal, but she is never 100% pain free. When she was in 5th grade she started losing her hair and has since been diagnosed with alopecia. Her hair continues to come and go as it pleases. And then, a couple of years ago, psoriasis made its appearance. Although my daughter is a happy, active, well liked teen who is also an honor roll student, I feel that she was robbed. She is an amazing kid and is as comfortable speaking to our legislators as she is hanging out with her friends. She's not intimidated by crowds and has spoken publicly before groups as large as 900. She is mature and wise beyond her years. I'm am so proud of the amazing young woman she has become, and yet I still feel that she has missed out.

I guess I just wanted you to know that as much as it must stink to have this disease, some of us would love to be the ones with it if it meant our kids would be well.

Hang in there. Your child will love you as long as you love him and give him your time. It doesn't matter whether you are playing catch or reading a book, it just matters that you spend the time. Kids are amazing, as your son will show you. And he will be compassionate and caring as he grows up, traits that will serve him well throughout life.

I do hope that you feel better soon and that you find a treatment for your disease that allows you to enjoy life.

Liz

[Kegrun]

I've learned to enjoy long sleeves and pants and how to get used to being alone relationship wise..lol.

Come ooonnn....that was funny!

[tmartha]

It made me not be so controlling/perfectionist - because I learned I am not in control. (Learned? I keep re-learning it.) :

More chill, Karen, and mellow, Fred - yes. And I didn't even know I wasn't there. I had no idea the amount of stress I was in.

I struggle, too, with feeling like my kids were robbed - and guilt. Them doing things for me all the time, their activities limited by my limitations - our finances totally ravaged by medical expenses...Why guilt when I didn't ask for or cause this? Don't know. Still working on learning this one, too.