Question:
Gee where does the time go?? This month marks the 10th anniversary of me having P. And to think 10 years ago I thought that little tiny spot on my elbow was a pimple..... Who would have thought that it would grow and grow till it consumed my very being. :( I thought it had been longer, it just seems that way, I made the mistake of looking at some pics and I started figuring up the dates and nope it's only been 10 years. So now for the important questions, Having severe P how many hours have I spent in the past 10 years scratching? If I would have saved every piece of crust, how much would I have? How much money have I spent on treatments, lotions, creams, etc? Oh well just things to ponder as I sit here scratching my head... literally.
I'm so dissapointed with my family, no one sent me flowers for my anniversary. Guess I'll celebrate alone.... :(
Greetings Merks,
Looking back, I have had Psoriasis for 28 years. Early on, like you, I gave my disease much more power than it actually was worth. Years of creams and ointments, 18 years of PUVA, removal of skin cancers due to 18 years of PUVA, alternative therapies, clinical trials at NIH, those damn steroids, now Biologics, etc.
First, I am ever so grateful to be living in this country during these times as I have had the opportunity to try all of the aformentioned treatments. If I lived in an underdeveloped country, I would have had to suffer with no hope.
Second, what good is money? I treasure my family and friends and my spiritual well being over money. If you put it into context money is not very important as sooner or later you will not be taking it with you. The only thing that money provides with respect to Psoriasis is that of Hope. Treatments (which you pay for) to me are sort of like the lottery. Sometimes you win, other times you lose - BUT, you have the opportunity to play again tomorrow.
Third, scratching your head? Have you tried Pentrax. It is $17 a bottle but it is the best thing that I ever found for my scalp.
My entire working carreer has been devoted to helping others through non for profit organizations. Here are a few examples of the people which I interact with on an ongoing basis:
A. A very close friend goes to Dialysis three times a week over at UNC.
B. I currently work for a program that all of the individuals are Blind. 90 of them.
C. I spent prolonged periods in the late 90's working with the Serbs and Croats over in Croatia and Bosnia after the war. There is a town called Vukovar (it is where they filemed Schindelers list) that made me shake. The people were devestated.
D. I spent prolonged periods of time in Sub-sahara Africa. I've seen people beaten to death for stealing food which they didn't have.
Who are you comparing yourself with? Is it with the Cleaver Family (Leave it to beaver?) If you are, in real life, Jerry Mathers (the beav) has Psoriasis also.
Yes Psoriasis can be a pain in the butt, but it is only Psoriasis. Sorry that I didn't send a card.
Michael
Michael you are a very interesting person. I love reading about what everyone does with there life. Your life exsperiences i find intersting. Helping people well i can't think of anything better to do with your life.
Merk once in a while it is ok to feel sorry for yourself. I know P is a pain in the butt. I am starting to get it in a very embarresing spot. I hate this. After all these years of having it and now this. GRRRRRRRRRRRRR i could just scream. I have had P since i was about 9 years old so i have had it for 20 years. Just something i got to deal with. Recently i was diagnosed with Pa also. In my opinion my Pa is much worse. I can't put cream on the P and the bone damage i now have is perminant i would much rather be flakey than have crooked fingers and all this pain.
I am so sorry your feeling down. I wish i knew the magic potion for all of us. It would be so nice. But i do find comfort in knowing no matter how bad i think i have it. There is always some one out there that has it wayyyyyyyyyy worse than me. I guess that keeps me going. Hope it will encourage you to.
all my love,
hi pat,
HAPPY ANNIVERSARY on your p day. well it's my day off and i can't sleep because of my back hurtting and im scratching my foot on the computer. it helps make them feel so much better and breaks the itchy blisters. there's not much i can help people with. but if i can help make one person feel alittle better. then that's what i do.
try and have a wonderful day all
richard
I held off posting a reply after I saw the first reply to this thread. Merkinsmom, it truly ok for you to feel sorry for yourself at any time, and it's truly ok for you to feel that you want to acknowledge that you've been b attling this ugly disease for ten years. No one has the right to question this or pass judgement on it.
I have had P & severe PA for almost an eternity -OR SO IT FEELS. Misdiagnosed for years, and only treated for the last two. Do I feel sorry for myself? YES I DO, do I have a right? Yes I DO. Do I let it rule my life? NO-that would be giving in to it. Do other's have worse disease's and suffer more tragedy? Yes they do. Does that make my suffering any more or any less? NO, It does not.
Your feelings are yours-and you are ok just the way you are. Happy Anniversary on your battle of ten years-I think we all deserve a medal for this fight.
Ihurt-Elaine
Elaine,
" Do other's have worse disease's and suffer more tragedy? Yes they do. Does that make my suffering any more or any less? NO, It does not. "
I couldn't agree more with you.
Pat,
Hope today is a better day for you.
Karen :)
1 Attachment(s) Hi merkinsmom,
Happy P anniversary. After the first reply I too was going to keep my mouth shut. You have a right to be angry. Its hard having P, and other family members cant understand what you're going through. For the most part you're posts and threads are upbeat, so if you want to have some time to feel sorry for yourself, I think its fine. Heck I will join you. Lets have ourselves a pity party. I know OTHERS on here have pity parties about other things too. Micheal, you have been down drowning in pity just this last dec, so dont you think others deserve to feel down and express their feelings too? merkinsmom, I am behind you 100%.
Patty
I'm so dissapointed with my family, no one sent me flowers for my anniversary. Guess I'll celebrate alone.... :(
Answers:
Greetings Merks,
Looking back, I have had Psoriasis for 28 years. Early on, like you, I gave my disease much more power than it actually was worth. Years of creams and ointments, 18 years of PUVA, removal of skin cancers due to 18 years of PUVA, alternative therapies, clinical trials at NIH, those damn steroids, now Biologics, etc.
First, I am ever so grateful to be living in this country during these times as I have had the opportunity to try all of the aformentioned treatments. If I lived in an underdeveloped country, I would have had to suffer with no hope.
Second, what good is money? I treasure my family and friends and my spiritual well being over money. If you put it into context money is not very important as sooner or later you will not be taking it with you. The only thing that money provides with respect to Psoriasis is that of Hope. Treatments (which you pay for) to me are sort of like the lottery. Sometimes you win, other times you lose - BUT, you have the opportunity to play again tomorrow.
Third, scratching your head? Have you tried Pentrax. It is $17 a bottle but it is the best thing that I ever found for my scalp.
My entire working carreer has been devoted to helping others through non for profit organizations. Here are a few examples of the people which I interact with on an ongoing basis:
A. A very close friend goes to Dialysis three times a week over at UNC.
B. I currently work for a program that all of the individuals are Blind. 90 of them.
C. I spent prolonged periods in the late 90's working with the Serbs and Croats over in Croatia and Bosnia after the war. There is a town called Vukovar (it is where they filemed Schindelers list) that made me shake. The people were devestated.
D. I spent prolonged periods of time in Sub-sahara Africa. I've seen people beaten to death for stealing food which they didn't have.
Who are you comparing yourself with? Is it with the Cleaver Family (Leave it to beaver?) If you are, in real life, Jerry Mathers (the beav) has Psoriasis also.
Yes Psoriasis can be a pain in the butt, but it is only Psoriasis. Sorry that I didn't send a card.
Michael
Answers:
Michael you are a very interesting person. I love reading about what everyone does with there life. Your life exsperiences i find intersting. Helping people well i can't think of anything better to do with your life.
Merk once in a while it is ok to feel sorry for yourself. I know P is a pain in the butt. I am starting to get it in a very embarresing spot. I hate this. After all these years of having it and now this. GRRRRRRRRRRRRR i could just scream. I have had P since i was about 9 years old so i have had it for 20 years. Just something i got to deal with. Recently i was diagnosed with Pa also. In my opinion my Pa is much worse. I can't put cream on the P and the bone damage i now have is perminant i would much rather be flakey than have crooked fingers and all this pain.
I am so sorry your feeling down. I wish i knew the magic potion for all of us. It would be so nice. But i do find comfort in knowing no matter how bad i think i have it. There is always some one out there that has it wayyyyyyyyyy worse than me. I guess that keeps me going. Hope it will encourage you to.
all my love,
Answers:
hi pat,
HAPPY ANNIVERSARY on your p day. well it's my day off and i can't sleep because of my back hurtting and im scratching my foot on the computer. it helps make them feel so much better and breaks the itchy blisters. there's not much i can help people with. but if i can help make one person feel alittle better. then that's what i do.
try and have a wonderful day all
richard
Answers:
I held off posting a reply after I saw the first reply to this thread. Merkinsmom, it truly ok for you to feel sorry for yourself at any time, and it's truly ok for you to feel that you want to acknowledge that you've been b attling this ugly disease for ten years. No one has the right to question this or pass judgement on it.
I have had P & severe PA for almost an eternity -OR SO IT FEELS. Misdiagnosed for years, and only treated for the last two. Do I feel sorry for myself? YES I DO, do I have a right? Yes I DO. Do I let it rule my life? NO-that would be giving in to it. Do other's have worse disease's and suffer more tragedy? Yes they do. Does that make my suffering any more or any less? NO, It does not.
Your feelings are yours-and you are ok just the way you are. Happy Anniversary on your battle of ten years-I think we all deserve a medal for this fight.
Ihurt-Elaine
Answers:
Elaine,
" Do other's have worse disease's and suffer more tragedy? Yes they do. Does that make my suffering any more or any less? NO, It does not. "
I couldn't agree more with you.
Pat,
Hope today is a better day for you.
Karen :)
Answers:
1 Attachment(s) Hi merkinsmom,
Happy P anniversary. After the first reply I too was going to keep my mouth shut. You have a right to be angry. Its hard having P, and other family members cant understand what you're going through. For the most part you're posts and threads are upbeat, so if you want to have some time to feel sorry for yourself, I think its fine. Heck I will join you. Lets have ourselves a pity party. I know OTHERS on here have pity parties about other things too. Micheal, you have been down drowning in pity just this last dec, so dont you think others deserve to feel down and express their feelings too? merkinsmom, I am behind you 100%.
Patty
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