A Moment to Reflect

[nitegale]

As Capital Hill Day approaches and many are writing their letters, I have reflected on the very first year when my palms and fingers erupted in what was at the time, debilitating p. Although my hands have improved since then, I am taken back to that awful time as I prepare to write another letter.

Putting aside all the pain an agony I was in with palms and fingers that were cracked, bleeding and fissured and how very difficult it was to use my hands, emotionally the disease took it's toll on me. At work everyone noticed how awful they looked. I became so embarrassed I would take my charts and write them in another room. I constantly wondered what patients and their families were thinking when I approached them with hands like that. I would put gloves on anytime I went near a patient, even if to take a blood pressure. I cried thinking I could never hold a patients hand to give them comfort. I agonized a great deal if I would lose my job. Finally, I went out on medical leave. I felt so frustrated and beat up emotionally that at one point, I felt I would rather die than live with hands like this. I became very depressed. That was two years ago.

Not too long ago those feelings were stirred up again when I saw another members hands at one of the get-togethers. I vowed I would never go back to that awful feeling again even if it meant sacrificing my liver for my hands. Funny how this disease can force one to do things out of desperation.

This is why I feel it is so important that we all get involved in Capital Hill Day, either by attending or writing letters. No one should ever have to suffer through those feelings or be forced to take medications that put our general good health at risk.


Marie

[RichJ]

hi marie,
i agree with you. i was just like you. i hated what my p was doing to my hands and me. robin and my son didn't wont me to tuch them. i fealt along. that will never happen again to me. i hope. i do what i can to suport the this place and what it trys to do. hope this makes some sence.

have a wonderful day all

richard

[nsf103]

Marie,

I was very moved by your posting. It made me cry, as it was all too familiar to me. I have been struggling with hand and foot pp for 3 years now. At my worst, i was red and fissured and bleeding all over the place. I felt emotionally destroyed and watched myself change from a confident 22 year old to an over-the-top-self-conscious 25 year old. Although I am better now (not 100% but not like I was), i still struggle constantly with the emotional aspect of this disease. I feel depseration all of the time and I hate P so much because i feel like it took away who i was. i know i shouldnt let it control me but sometimes, it is hard...when people stare or give you looks of disgust. i have understanding friends and family, but its still difficult for me not to get upset with them when they speak about my hands as if it is no big deal. i am so glad that I discovered the boards here because it is truly the only place i can turn when i need some understanding and when i feel very alone. You are correct in saying that we must all make an effort with Capital Hill day. Thank you for your honest post and for being there for me, without even realizing it...

Nicole

[kkellogg]

This is what it's all about people. Thanks.

[nitegale]

Rich, Nicole and Krista you have just made my day!!! :) There is no greater feeling than knowing that you have reached out and touched someone.

Marie

[Patchsigns]

Marie, Nicole, Rich and Krista,

You are all beautiful. You have beautiful souls... You are loved... You are touching and inspiring and wonderful. Never forget that.

Throughout all of the pain and the deep wailing from the very depths of your souls, as you cry out in anguish.... know that I think you are all beautiful.

You matter.
You inspire.
You touch our hearts...

Blessings,
Joe

[RichJ]

hi joe,
you do to and im so so glad that i have you as a friend. you are a wonderful person. you have helped me more then i can evey put into words. thank you for being here and for what you do for all the people on here. lol

have a wonderful week end all

richard

[emilou]

the saddest thing of all
someone not wanting to touch us
or have us touch them
of having to try and cover up
or someone wanting us to
to have someone not want to look at us
I am crying as I write this
it hurts physically, emotionally
I don't want SYMPATHY OR PITY
I want EMPATHY
unconditional acceptance
I can't give this to you
it isn't contagious
It hurts but not as much
as when you turn your head away
or you won't touch me
or don't want me to touch you
that HURTS
EMILOU
we need to STOP the hurting
help raise AWARENESS
advocate

[RichJ]

hi emilou
i agree with you. i was crying when i read what you said. it was beatiful. thank you. i just looked at my hands and said i can't beleave what you looked like and i never won't you to look like that again. i would cut off before i would have them look like that again.
hi marie, you are a wonderful person to and so is krista and every one that's on here.

have a wonderful week end all

richard

[jgirl]

A lot of us (including myself) haven't the slightest clue where to write a letter - maybe someone could post some info for those of us who are usually gov't shy? I was moved by this entry, so
I've decided I'm not going to let a few comments from some individuals who weren't thinking at the time on other threads stop me from helping a whole lot of people who need and deserve it... and I think I know what causes/heals p... but I realize some people need to hear things from "higher ups", I will write on their behalf so that perhaps more research will be conducted on MANY different methods of healing...

[Patchsigns]

Jennifer, I think the world of you. You are a wonderful person. You have helped me tremendously through your posts in regard to the Slippery Elm Tea and American Saffron Tea. I am trying, as best as I can, with your help, to follow the 80% alkaline/ 20% acid diet.

The Tea regimen is helping me. I am almost rid of all of my guttate P on my lower legs. Almost rid of guttate P on both of my lower legs. (I had to say that twice, it's so awesome...)

My sufferings with PA... I don't know what the Teas will do with that. I don't think that they'll uncurl my knotted fingers. Maybe they will. That would be so neat. But, perhaps research will determine why folks with P.... somewhere down the line.... develop PA.

It's terrific that you are willing to write those letters to your senators and representative. You can click on any of the Capitol Hill threads and there'll be a sample letter.

I wrote a personal letter about my plight with P and PA and attached a sheet that summed up the proposed cuts in funding for these particular diseases.

You can get that link on the P home page.

Blessings,

And thank you.

Joe

[emilou]

dear rich,
I never meant to make you cry :(
the hardest part of this
is learning to accept ourselves
maybe then others will accept us
and love us unconditionally
P is only a part of me
we all have so much more to offer
as evidenced in this community
we are caring, compassionate people
we are strong, loveable, approachable
we are funny ;)
where would we be without
a great sense of humour
again thanks rich
:)
emilou

[ouchyk]

Marie,

Very touching story.

I think everyone should go back and look at thier very first post here and see why you came here to begin with. I know for me I was looking for information and help with understanding why I had this disease. I still have many questions that are unanswered and can only hope that through research I can find those answers and better treatment and quite possibly a cure.

Karen

[jgirl]

Here is the affirmation to remedy possible emotional cause of p, according to Louise Hays, minister and International best seller who cured herself of cancer using her own methods.

I am alive to the joys of living,. I deserve and accept the very best in life. I love and approve of myself.

She recommends repeating this to yourself 100 x's a day, so it gets into your subconscious.

[Patchsigns]

Karen,

I can tell you what my first post was...

I wanted to find out where the common denominator was between my P, your P and everybody else's P.

I wanted to find that one common denominator. I didn't find it.

I found that for some of us, they believed that stress triggered it. Others believed their diets may have triggered it. Some believed it was strep throat that caused it. Some believed it was hereditary and gene-linked. When I discovered that children had it, I was more perplexed than ever...

Just as some medications seem to keep the disease treated for one, for others that medication offers ineffectiveness. Alternative medicine may work for some, while others have found no change in their disease.

I quickly discovered that it was baffling how we all discovered our P...and just as baffling at what seems to be working to clear our P.

I also learned that I am not alone.

Together we must find a cure for this disease.

We must.


Blessings,
Joe

[RichJ]

hello all
i will never figure out alot of things but i will say this is one of the place's that will give me the most hope for a nomarl life.

have a wonderful night all

richard

[kkellogg]

What lovely words, Joe. Thank you so much. Here's my first post:

"Hi - this is my first time on the boards. I have "P" on my hands and feet (about two years now). Terrible pain, cracks, fissures, peeling, bleeding, hard time walking, doing anything with hands. My mom has suffered w/ hand and foot P for the last ten years - now I can empathize. We have tried everything under the sun; steroids, allergy meds, soaks, puva, macrobiotic diet - nothing works. I sleep with gloves and socks and feel like I single handedly keep Neosporin w/ pain relief in business. So frustrated and tired of this mess."

I remember that loneliness like it was yesterday. I am so lucky to have found you all.

[nitegale]

A lot of us (including myself) haven't the slightest clue where to write a letter - maybe someone could post some info for those of us who are usually gov't shy? I was moved by this entry, so
I've decided I'm not going to let a few comments from some individuals who weren't thinking at the time on other threads stop me from helping a whole lot of people who need and deserve it... and I think I know what causes/heals p... but I realize some people need to hear things from "higher ups", I will write on their behalf so that perhaps more research will be conducted on MANY different methods of healing...


Jennifer, I can't thank you enough! I think Joey who is in charge of advocacy here will be posting some kind of form letter in a few weeks. It is very simple to fill out. In the letter there is an opportunity for you to share your own struggle with p and your interest in supporting research into more natural remedies which if we are lucky could lead to a cure.

Thanks so much.

Marie

[jgirl]

I'd be more than happy to push for more research for the methods that have cleared me so far and at very least kept my p in check(2% and fading daily, elbow and knee p went away on a raw foods cleanse 2 years ago and has not come back :), doing Pagano now ) not to mention helped me lose weight fairly effortlessly...a miracle in itself for me(obese woman in my family - bad genes - size 4 now though -miracle!) Lord knows, it has been a lot of work, mostly because everybody thinks I'm WEIRD because of the way I eat and because I rarely drink...I can't wait for the day this stuff is more common knowledge, so I can eat without 20 questions! This is the hardest part for me about having p - not having it anymore so much, 'cause the itching is minute and all redness is gone, just a little bit of pink and pigmentation left in a concealed area - but still feeling so different for having to abstain from so many foods and having to answer all those QUESTIONS!.

Oh well, that's my lot! If it weren't for p I'd probably still be addicted to soda , coffee, candy, fast food, junk food etc...not wanting to itch was my motivation.

Maybe people just need to hear it from the "leaders", I guess. If they find a miracle drug, that's great too, unfortunately, it would probably take years to know true LONG-TERM side effects.

(How did this go on so long? I think I traded all of those other things for a computer addiction :p back to getting some work done now.)

[nitegale]

Jennifer-

Eating right and being healthy is very important to me too. I recently lost a lot of weight and have been keeping it off fairly easily with a similar diet of fresh vegetables and fruit and very lean meats. For snacks I eat nuts. My dh calls it the nuts and twigs diet. My family makes fun of me because our cupboards are filled with almonds and walnuts instead of cookies.

Dieting has had no real effect on improving my p but would not hesitate to think that it could work for some. I think the psychological benefits that one one would recieve from an improved appearance, may have a positive impact on how they view their situations.

I also think that living with p is so very hard to do and clearing by whatever method, can boost ones self-confidence and have an even greater impact on their life.

Marie :)

[RichJ]

hello all
this was my first post. it makes me cry. to think back to then. well let see if it works.



--------------------------------------------------------------------------------

hello this is the first time i got on here. i have psoriasis on my hands and feet, igo to a der every 3 weeks. he has put me on all kinds of med, uv light and serods. im not the greats at grammer but i read what some have and ihave the same thing. there are days that can't walk and nothing seams to help. can some try to help me out with some thing to try?

[kkellogg]

Some days it's so hard, isn't Rich? You've come a long way, baby. ;)

[RichJ]

thank you krista. you have made mine night. lol and yes it can be very hard some times. that what i love this place for. you all have helped me so much. i can't repay you all enough.

have a great night my friend

[jgirl]

Marie,

How long have you been eating like this? just out of curiosity?


My clearing is NOT in my imagination...sorry your diet hasn't worked for you so far...but what I did to clear the first time was not just a healthy diet, but a cleansing detoxification raw foods diet and 3 days of juice fasting - EXTREME detoxification...nuts were not allowed, although almonds are alkaline but not considered cleansing...only watermelon or veggies and raw seed cheese for breakfast - NO animal products whatsoever or anything cooked over 115 degrees - 4 oz. of wheatgrass a day - a raw probiotic drink called rejuvalec...lymphatic execercise in the morning - the diet was at least 90% alkaline forming if not 99% -this was at a world-reknowned healing center...so let's make sure we clarify between a "healthy" diet and a detox diet...


What I do now is similar to what you do, but with at least 50% raw foods and a whole slew of herbs, Slippery Elm, saffron, turmeric, milk thistle, burdock, dandelion, primrose oil...it is a slower way to go about detoxing. You have to get to the ROOT of the cause, whixh very truly may be different for everyone...but a detox diet and a regular healthy diet are not the same thing.

I know this isn't directly p related, but I didn't want to start a new thread to say this. And the title of the thread was so appropriate. So I know Marie won't mind if I pop in and reflect.

I was feeling so blue yesterday. Last day of work after 30+ years, thinking about my move and the physical distance that will be between me and my sons & my close friends. I cried several times yesterday and the night before. My face was a mess.

Then around 9:00pm my husband came out to the living room looking as though someone had just kicked him in the gut. He said he had some very sads news to tell me and I immediately thought, "Now what has happened to affect me." Well, it affected me, but it wasn't about me.

As many of you now we are moving to Arizona in about 3 weeks. I just sent a get well card last week to the woman who bought our house. We are still living in it. We made a great deal with them to stay until we moved. She was having trouble with her chemotherapy and I wanted to cheer her up by telling her she had to feel well soon cuz she had lots of fun decorating to do.

She passed away yesterday. She will never live in her new house. I have put aside all the trials and tribulations that I have been complaining about regarding the details of the move. I have stopped (for the moment) fretting about when my P will return. And my joint aches suddenly seem trivial. She was only 59, a well educated, soft spoken woman with a warm smile. She leaves her husband and 2 grown sons. Although I didn't know her well, I will never forget her and the short part she played in my life. And I thank her for putting things into their proper perspective for me as I was letting them get out of hand. Thank you Maggie.

XOXOX

Annie

[RichJ]

hi annie
im sorry to hear of her passing. thank you for reminding me what life is about. i do my best to appreciation all that i have. some have more and some have less. some have it better and some have it worst and some day it will all be gone. thank you annie.

have a wonderful week end all

richard