My beautiful daughter wants to die

[infinity8way]

I am the mother of a beautiful 20 year old daughter. She was one of the most popular girls in high school, cheerleader, smart. She went away to college. She came down with a severe throat infection, then psorasis. We had her tonsils out last summer. The psorasis got worse. Could not get into a good dermatologist right away. I have been waiting for this day. Woke her up this monring for the appointment. She said she wanted to die. My heart is breaking. How can I help her. She says I don't understand. I don't know what to do. The doctor is putting her on a chemotherapy drug plus light treatments. I just hope this will help. I am worried about the side effects of this drug. I just want my daughter back the way she was. She feels all her hopes and dreams are gone. She feels I don't understand. Can someone help me understand. I love her very much. I feel I'm losing the beautiful girl I once knew. Please help

[Moonchild]

I have had P for 25 years and I am 30. I have been there. Allthough being dead was not really my intention, it felt alot like it would be best at times.

It is so hard ! And she is right, you don't understand, because you have no idea what it is like.(or do you have P?) Anyway, I would have to say that support from you, her family and friends is one of the most important parts of living with this disease.
She is going to have good days and bad days and alot of in between. I have found that in the past some of my days would be great and then take a turn for the worst at a moments notice.

The key is to live with it though, and not just survive. She is still so young that she has so much to look forward too.

Here are some tips that have helped me over the years.

Don't listen to the shallow people, if they cannot look beyond the exterior, then goodbye!!

Moisturize, Moisturize, Moisturize.

Get involved with something(being around positive people helps)

Realize that not everyone even knows that P exists.

Educate yourself about this disease, and then anyone and everyone that will listen.

Be open with how you feel today, tomorow, last week.(don't close yourself in, the more you keep it to yourself, the less others around you can help you out, or be supportive.)

Don't let this make you bitter, getting this way is very easy.

Remember that you are just like everyone else on the inside.

Don't skip the meds, I have learned the hard way many times that skipping treatment leads to flare's.

Well, I am sure there are many more helpfull tips, and I am sure that you will get more feedback. I hope this helps, I feel for your situation.
Please feel free to PM me, I would be more than happy to help if I can.

[PJ Leary]

Hi,

Welcome to the board. Encourage your daughter to learn as much as she can about the disease and the treatment options. This site is an excellent resource.

If I were you, I would get her to a counselor quickly. Ask the derm for a referral, or ask your insurance company for a good therapist who does medical issues counseling.

Depression is a very real problem for many folks with p. The important thing is to recognise it as an additional medical issue and seek proper treatment.

Ask the derm for specific mdications to alleviate the symptoms of pain and itch. These will help tremendously. A good friend of me with an extensive case of p once asked his dr what he could prescribe for the pain. The answer he got was that psoriasis patients don't have any pain. Bad dr, very wrong.

It sounds like the dr is using mtx, you should read up on all of the possible side effects. Personally, I would not allow that treatment for my own 20 year old, nor any of the retinoids either. The UV treatments are relatively safe, and often very effective.

You and your daughter really need to understand that Information is Power when dealing with any chronic illness.

Good luck, please let us know how we can help.

[chaimFL]

I developed psoriasis when I was about 15, but it was very mild and unnoticable until I was about 23 and then all heck broke loose. Although now I am agressively treatly my psoriasis with topical meds, generally over the years I have only treated the areas on my body that were visible such as my face arms and from the knee down. I've never had enough nerve to try the systematic or diologic drugs that are out there eventhough my psoriasis is severe enough to warrant their use. As PJ has stated, MTX (methotrexate) is probably the drug the doctor is thinking of. The side effects are nausea (maybe vomiting, diarrea, or just upset somach), hair loss, headaches and fatigue. It can also have a negative effect on your liver so regular blood work is needed. All the side effects are potential and not a definite. As well, the doses used to treat cancer is much higher than to treat psoriasis thus the side effects can be and are usually less than for cancer patients. There are people who are on this drug for years without problems and there are some that cannot tolerate the drug. Like I said before I haven't built up the nerve to take the plunge into these type of drugs, but under a doctor's supervision they are safe. PJ mentioned that she would not put a 20 year old on this type of med, I will respectfully disagree based on what you say your daughters emotional state is from this condition. MTX may not work, may only work marginally, or could clear her completely. It's a tough decision to make....Good luck!

[chaimFL]

One more thing...encourage your daughter to post in our general discussion. Although the majority of us have never met, we are all friends and provide advise and support for eachother. This is a great place to ask questions or to just vent frustration. There are many people your daughters age that can sympathize. I am 27 so not much older, but I'm a 12 year veteran of psoriasis.

[Nena_Taina]

I KNOW it must be really, really, really hard for your daughter to understand why her? why now? why not later? Specially, being so young and popular. Sometimes we live to others expectations. It is really hard, but she has to focus on controlling this before it controls her. Knowledge is power. I've been surfing this web site as well as others for quite sometime and learned a lot. There are a lots of home remedies that work for some people. I honestly have not tried any of the home remedies yet. You should also have your derm refer her to a profesional so that she can release some stress and learn how to cope with this dissease. I'm new in the message board and it helps to know I'm not alone. Have her join!

I wish you and your daugther the best.

[chalo]

Hi!
Psoriasis started on me when I was 20. I am from Mexico City and at that time I was in Moscow. When I came back (to Mexico) it dissapeared for many years (10) and then came back when I moved to Chicago and now this year has been the worst with about 75% in my body. You can share with your daughter this message and know that at times the itch is so horrible and unbearable that I feel like killing myself but I guess I am not and I will never be of that kind. On the contrary I have developed some sort of resilience and I wake up every day thinking and feeling that I am getting better. Before you try hard medicines try (if she can of course) to sunbath carefully of course, progressively. Right now that's what I am doing and some parts are beginning to clear up and the itch is slwoly diminishing. Anyway feel free to E-mail in case you have questions.
Tell her good luck and don't despair, there's a lot of hope.

[chaimFL]

The mot important thing for you as a mother is support. If your daughter is anything like me, it's probably not a good idea to say "I know what you're going through" or "It's not as bad as you make it seem" always keep in mind that this disease does not go away, yes it can go into remission, but it's not curable and there is an emotional roller coaster that comes along with this condition.

[Zwijndrecht]

I cannot begin to improve on the advice you have been given.

We all feel for you and your daughter, we all have been somewhere in that well of dispair dealing with this neverending curse. But we also all come out of it.

Keep talking to us, keep us up to date, and encourage your daughter to post as well.

As a last resort, print out the responses above and leave them for her to find, do not push her to them...

[SouthpawGrammer]

Yes, all good advice has been said. you feel powerless like my mum. i have 2 siblings and we all have it. my parents do not.......

so its hard to identify.

now, i would agree 100% try and get your daughter to post on the boards..............she can say what she feels like, even if its that she feels that there is no way out.......

with P the horrible thing is that it causes these feelings. we all feel like this at some stage
this board is fantastic

i wish i could give you both a hug............http://216.40.249.192/s/contrib/tweetz/hug.gif

please get her to post!

Paw xxx

[Allie]

She's lucky to have you caring about her, but to her it is not enough & that you need to understand.

Not to sound rough, but I have been through these times. I recently went through this in Feb. With the loving support of my hubby I went to see my Dr. & she put me on an anti-depressant/anti-anexity drug called Lexapro. While this is not a good long-term fix, it was a wonderful for getting me through that point in time. I have found the more upbeat I stay, the less depressed I am, the less my p affects both my body & life. I still am on Lexapro b/c it helps keep my p off my face, where emotionally it does me the most damage. I am only 27 & looking to have kids in the near (not immed) future, so I am looking for other ways to help maintain my p & my emotionally stability around break-outs. With this last round, my husband made me realize that it takes me wanting to live to help my p - & not his reinforcements. If I live on his day-to-day compliments & emotional ups, then I have really bad days when he has bad days & I have bad days when I am having one on my own. Therefore, I am never able to support him or myself.

I have found this board to be wonderful in helping me find that internal support. I believe this board does wonders for helping each other out as we have all been there or we realize there are those of us who have it worse. And there are those wonderfully positive stories of remission. Paw I believe is the latest. Those are the real reason I come here, the hope it can be me one day.

I guess I am lucky I developed p when I was 14 b/c I always had it & did not really know my dating life w/o it. That is probably the hardest part for your daughter to deal with @ this point in her life. If she would like someone to talk with who understands her point of view, please tell her to PM me. I can tell her many stories of guys I have dated who tell me they could not even tell I had p when they looked @ me b/c they did not see p, but instead saw me. P may be a part of my skin, but it is not who I am.

Gosh, writing this just proved to me how far I have come emotionally. Yeah for me. Thank you for posting this. You have made my day!!! I hope one day soon your daughter can feel this kind of uplifting joy. :D

[Barbi]

thanks to all who have written so far......my daughter is also a new P onset at 14 and 1/2. She had just signed a modeling contract last year only to have her first episode six months later.
Now, we are dealing with horrendous scalp psoriasis. she was initially devastated, but the body has cleared somewhat and that gave her a ray of hope. She does not model anymore as we can never time the breakouts, or seem to disguise the spots to the camera's liking. While she still battles depression when the breakouts get excessive, we struggle on to get her back to a more manageable state. She has agreed to go into therapy to help with her self esteem, and with relaxation. But, it is hard to continually deal with other teens who can be sooo cruel. She has been able to maintain a few good friends who are sticking with her thru the thick and the thin.
But for the most part, we have had to accept that the majority of people can be ignorant. She is working to accept that God doesn't give us more than we are able to handle....So, she figures she must be able to handle alot.......And I agree, it is alot to handle on a continual basis....Hang in there with the rest of us.....'Cause I am assurring her that there are people who are willing to hang in there for her.......from another mom :) Oh and a quick P.S. although she wanted to go to the National Convention in August....on the date of the convention, she has two dates, one date in the afternoon for a concert in Philly, and the other for an evening concert in Jersey (Christina & Justin):cool:

[Nicky25]

Oh my god!!
I really do feel for both u and ur daughter.
Although i am still only 15, i do no exactly wot ur daughter must b goin thru. I hav had psoriasis for over 8years now.
It aint easy wen u want 2 go out inclothes jst like ur friends and u hav 2 worry about how it will look wiv ur p.
It aint easy wen all ur friends hav boyfriends and guys aftr them and u feel as if no1 in the world cud ever want u bcos of this dreadful condition.
It aint easy to keep ur head up and b proud of bein hu u r.
It aint easy to thnk that other people will love ur body no matter what wen u urself hate the sight of it.
IT AINT EASY HAVING P!!!!
But..........no1 is perfect.
Some people may make comments or stare.....thsi is not because they r bein deliberatly cruel....its because not enough people r educated in this dreadful disease.
People may say well there are people a lot worse off than u..but that dnt help.Ur problem is what is important to u, not theirs. To u having p is the worse thng in the world, and whatever u try to do it will still feel like that.
This illness may b a life sentence-so u cant go on lfeeling depressed-uve got 2 pick urself p and sumhow turn this into sum kind of positive.
See it as a challenge, and believ me many people wiv psorisis r the nicest people u cud eva meet!
Lots of luv and hope
Nic x

[lindamurray]

IVE BEN THER STILL AM AT TIMES ITS DREADFUL TO HAVE THIS STUFF I HAD IT AS A CHILD IM 57 NOW I STILL HAVE IT I FEEL SO SORRY FOR HER ITS HARD TO REALIZE HOW IT MAKES YOU FEEL . ALL THESE WONDERFUL PEOPLE HAVE GAVE YOU TH BEST ADVICE YOU COULD GET ANYWHERE BECAUSE WE KNOW .THERE IS LOTS OF NEW STUFF NOW NOT LIKE BEFORE KEEP TRYIN GOD BLESS

[parthenia]

with time, you both will understand so much more about P...with understanding comes knowledge and with knowledge comes power (ask me how i know)...

my daughter is 11 and got P when she was 9 and she's had more flareups than not...but it's just now that we've been able to kinda settle with this ailment and know exactly what we have to do and when to do it - they'll be a lot of trial and error - but soon and very soon, something WILL work!

the best advice i can give is to keep a positive attitude about the whole thing - even tho i was a mess initially, my daughter has always remained happy-go-lucky and sorta just lives with it - but she does realize that we're trying everything that's out there...

take care

[Patchsigns]

We have all gone through feelings of depression and moments that we thought we were the ugliest creatures on the face of the earth. This is a horrible disease that we battle daily. There is hope. We will beat this disease!!

My heart breaks for her sorrow and despair and for what you, as a mother, must be going through as well.

Please know that we are all here as friends and as a family. All of us will try and help you. We'll be your shoulders to lean on, ears to hear your daughter's cries and we will freely give you sound advice because we all have been there in some capacity.

Our battle is a daily one. We do feel your pain.

Lots and lots and lots of love, hugs and prayers,

Joe

[rosy3939]

Dear infinity;
As a parent my heart goes out to you and your daughter as she is going through a real to tough time. But as was said before there is no way for you to understand the torment and pain she is suffering physically and emotionally. You have been give some great adivse form both PJ and Chaim and they both speak from experience.

There a number of steps you need to take as a parent to help you daugther. Beside the medical help she is getting you need to do the following:

1) get her to councilling. Although she may be only saying she dosen't want to live this is a cry for help and you must get her that help now.

2) You didn't say where you are from but there may be a support group in your area try and get her to one. There is a listing on the NPF site under the community header.

3) Get her to read and post to this board. There are so many people here who will lend an ear and be a friend. Many will respond both on the boards and in private PM if she feels more comfortable in doing that. We, they have all been through it. She is not alone. We are all ages but we do share the common bond of "P". Many are teenagers or in their early twenties and have psoraisis and have been where your daugther is and can help.

4) As a parent keep reinforcing that that is help in managing her disease and that your love and support is unconditional. And do everything in your power to get her that help.



BUT MOST IMPORTANTLY IS TO GET HER THE COUNCLING THAT SHE NEEDS TO START DEALING WITH HER PSORAISIS
AND THE EMOTIONAL EFECTS IT IS HAVING ON HER LIFE. PLEASE DO NOT WAIT!

Lets us know how she doing. We do care.

Mitch aka Rosy

[grafexguy]

This certainly is a heart-breaker!

I've struggled with Psoriasis for over half of my life now. I know I had it at age 12 but was not diagnosed until 18. I'm now 30 and each day, continues to be a challenge (and a blessing), quite honestly.

Please seek professional help for your daughter quickly. Then, after she has gained some solid inner strength, please encourage her to join this group. I'm not alone in stating that this particular family is ulta-supportive and we will all be here for her. Folks on this board sincerely listen and support one another.

In the meantime, I will offer my prayers and positive energy for you and your daughter. May you find the strength and security you need to get through this challenging time. There is hope. Seek it fervently.

Blessings,
Grafexguy