Clear? No, P has moved from my skin to my joints!

[Engadine]

Hi all! :)

I was so happy. Some tiny spots on my elbows and a very small one on my right knee was all that was left from my skin P since 2nd half July. Face, shins, buttocks, forearms, hands,......clear. I hadn´t changed nothing: (perhaps a better and healthy food) MTX (10 mg. each 10 days), Daivonex (daily) and steroids (on week ends). But ...... pain came in place of itching. And to be serious, I'd rather itching back! ;).

It's simply unbelievable. This is not the result of moving, let's say, bacteria, virus or any other germ around my body, but my inmmunologic system changing the rules in the middle of the game. :confused: Why the hell all macrophages or IL2 or whatever chemical compunds are in the origin of P behave this ugly way? That's no fair at all, I am fed up, this time I feel very frustrated. :mad:

I can only ask them, whatever they are, to move back to my skin, please. Don´t stay on my joints - hands, left shoulder, right knee, left hip, right elbow - and take fear away with you. Sorry, but this is the first time I feel so miserable in my life. I work with my hands, love sports and it looks so unfair to me. :( Everybody in my family and friends is healthy but me.

Well, OK, life is like this and it is what it is. If YOU are felling worse than me, my excuses for my whinning like this, but I am feeling a bit shocked and sad.

Thanks for listening. BTW, moon is shining beautifully tonight.

Engadine.

[twobpresent]

Hi Engadine,

Sigh. It sucks - through 15 straws, as one of my sons used to say. And it kind of feels like a cruel joke, huh? To think the one problem is going away, only to have the other emerge.

But I have to tell you that I was impressed...in the midst of the pain and frustration, you still managed to appreciate the beauty of the moon. Not everyone would do that. I would say that while the disease may be attacking your body, you've got some other great things (i.e. humor, courage, intelligence, gratitude, etc.) going for you. Good for you!

So. Question #1 - you are going to talk with your doctor about this movement to your joints, right? You didn't ask for advice, but I will tell you that it has taken FOREVER to get a decent, clear diagnosis of PA for me - which means that there's damage going on, etc. For what it's worth - let your doctor know SOON if you haven't already. Who knows what treatment course you'll follow - but you do need medical support to work that out.

For tonight, just know that you will be in my thoughts. Hope you are able to get some rest. (If you like baths, try using bath salts that are sea salt based, maybe with either rosemary or lavender essential oil in them - be sure to look for natural and/or organic ingredients. I've found this really eases some of the pain and stiffness.)

Blessings,
Cherie B.

[peggyb]

Oh honey, I completely empathize with you. That is my life you described there. It is so freaking frustrating to be sick, be in pain, and/or have itching or have them all at the same time, and you did nothing to bring it on! You've done nothing to deserve it! When I was younger and a party animal, I'd do things, then pay for it the next day. With p and pa, I feel like I'm paying for something every single day, but didn't do anything, didn't have fun getting this way, no funny stories about the night before. I'll bet you feel that way, too. I've had pa and severe p for years, and there are so many things I just can't do anymore, or they're so painful to do it's no fun. You're right, it is unfair to be hindered from doing the things you love, or things you need to do. It makes me angry and sad and empty inside. I'm sorry that you are going through such a hard time, and I hope things turn for the better soon. Reading your post made me realize that I am not alone; there are other people out there who know how I feel, and I know how you feel.

[baldwin123]

You are welcome to whine any time, although you definitely are not whining! It does stink all right! Keep believing though that it will get better, and that you will find treatments that work for you to keep this in check and allow you to do what you enjoy and need to do! Hang in there kiddo, and write any time!
Jen

[docmks]

Hi all! :)

I was so happy. Some tiny spots on my elbows and a very small one on my right knee was all that was left from my skin P since 2nd half July. Face, shins, buttocks, forearms, hands,......clear. I hadn´t changed nothing: (perhaps a better and healthy food) MTX (10 mg. each 10 days), Daivonex (daily) and steroids (on week ends). But ...... pain came in place of itching. And to be serious, I'd rather itching back! ;).

BTW, moon is shining beautifully tonight.

Engadine.

Hi Engadine,

I just got home from a late meeting (I'm in the Pacific Northwest) and the moon was incredible-so large and bright, shining through slender threads of clouds. I read your post and wanted to say hi, I hope you are feeling better, and I am so glad you posted. I certainly know what it feels like to have one part of you go clearer only to have another part flare up...P and PA do this dance with quite a few of us. You've done some really important things by posting and sharing your feelings; you aren't whining. In a sense you are affirming what so many of us have already experienced with this disease. We are there with you. I think it is really important that through all your pain that you noticed how beautiful the moon was. When I take my walks each day (slow as they may be with cane in hand) I always am grateful for the beauty I see....like two hawks hunting for food in a fallow field, or a magnificent sunrise. I think noticing things like that is one of the most important ways to be positive about something when you don't particularly feel good. Thank you for that reminder. And take good care,
MK

[FlakeyMatt]

Whining is what the boards are ALL about about!!!!!!!! :p (j/k)

All joking aside being able to come here and vent to people who TRULY UNDERSTAND what you are feeling is a comforting experience


I agree with Cherie B You should discuss this developement with your Doc ASAP

I have said an expression for your years You can ignore your P/PA but they usually won't ignore you! (Isn't that right Jody! ;) )

F.M.

[Engadine]

Hi all! :)

Thanks very much for all your kind words and advices :D. Be sure that the moon hides every morning but your words will keep shinning all day long in my mind. They, in combination with the passing time, make me feel much better today. Joints hurt but, on the other hand, pain let me know they are there :D though I'd like another way to take conscience of them.

Both my derm and my rheuma are enjoying a well deserved holydays, but I'll be waiting at the last one's door as soon as he returns. No doubt his covering fellow is very nice but I like my dear Dr. Lamas. I'd rather wait.

Yes, it is unfair, very unfair, because you haven´t done nothing to provoke it. But cancer is too, as ateroscleosis, as lupus, as crown syndrome, all inmmune related diseases but the first one. A car accident that takes away a good friend is also unfair. I guess we all cross the path of unfairness many times in our lifes. It looks like I have just jumped on it ;).

P is turning nasty in my joints but all the rest around me keeps improving as long as I read of fantastic people like you living in this forum. twobpresent, peggyb, baldwin123, docmks and FlakeyMatt, look in my eyes, they say a deeply heartfelt 'Thank you'.

Best regards,

Engadine.

[RichJ]

hi engadine,
i, glad your feeling alittle better. pain stinks :mad:

try and have a good day all

richard