just diagnosed

April 13, 2008

Hi ,

Definitely all fried foods and prepared meets like sausages, frozen, and caned

foods are aggravating my PA, although I tried consume all organics,it did not

worked,and I am avoiding them.

also if I take high calorie foods with red meets for more than one or two days I

will pay for it with pain and inflammation in my joints specially ankles. High

Sugar containing foods and fruits are the same. I avoid alcohol and smoking

and use spices like Ginger and garlic and replaced sugar with the xylitol and

Stevia, also avoid omega 6 oils that aggravate inflammation such as corn oil,

soy bean oil, safflower oil and sunflower oil. I follow a chronic pain and

inflammation protocol

(long -term joint pain, chronic inflammatory diseases) which is helping me to

manage my inflammation and pain better. I know this disease is not curable but

with medicine and choosing healthy lifestyle and dietary and supplements we can

have more chance of sending it to remission more often and for longer terms.

Unfortunately the only thing that I cannot avoid it is stress, which I try to

use relaxation techniques such as meditation and so on.

I wish you the very best of health,

Peace soudi

April 14, 2008

Interesting. I have found the same things. Fried food is awful and

increases my pain. I have also found all beef and pork products make my

arthritis worse, so I just avoid them as much as I can. I wish I was

consistent. I only cook with olive oil and try to stick with a low fat

vegetarian diet and when I am consistent I feel much better. I have not

drank cows milk for over 5 years and usually drink soy milk. I have

also noticed that many spices make me feel better including ginger,

garlic, cinnamon, curry, and turmeric. My husband makes a vegan soup

called mulligatawny that is fabulous and I immediately feel better after

eating it because of all the fabulous spices. How did you get

information on your chronic pain and inflammation protocol? Is there a

web site I can go to for assistance? What medicines are you taking?

Thanks for your help.

" Sheridan " <sksherid@...>

April 15, 2008

How about sending us the recipe for the soup??? Sounds awesome. The diet you

try to follow is very similar to the one that Dr. Weil recommends for

auto-immune disease sufferers . . . . . basically vegan.

Joanna Hoelscher

May 1, 2008

Hi ,

This group is a great resource and support system so I'm glad you found it. The

National Psoriasis foundation has a great website with lots of info

www.psoriasis.org plus there are local support groups. You can find out if

there is one in your area by looking on the website. Another great thing I

found helpful and so did my husband was reading the " Spoon Theory " at this

website: www.butyoudontlooksick.com. Its a good way of thinking about our

illness as well as others that have lots of pain and fatigue.

I also think humor helps. I know that at first that is hard but I tried to rent

funny movies and read as many funny things as I could. It does help, at least a

little.

Of course, finding a good rheumatologist is very important. I never have had

the psoriasis too bad and only a little bit of the nail changes but the pain and

swelling from the arthritis is what gives me trouble. I tried many different

anti inflammatories, methotrexate, sulfasalazine but the thing that has helped

the most is Humira. Everyone is different so you have to work with your doc to

find the best treatment for you. And remember that some people do go into

remission. When I first started having symptoms, my husband had to take over a

lot of my household duties and there are still days where I need 11-12 hours of

sleep or more which limits how much you can do. However, I found that after

starting the Humira, my energy improved an I am now working part-time.

Some people in this forum do have disability so that is a possibility if you get

to that point. And there is help out there if you need help with insurance,

etc.

Take care,

Ann

May 1, 2008

OK.....First of all, I'm sorry you feel punished. It's not fair, but, hopefully

I can help get you some relief. The first places I got hit were my hands and my

face. Bad.....I had to wear rubber gloves to change diapers and I couldn't wear

makeup due to the open sores. I set out to find help. The doctors gave me

creams and shots that just gave me dry skin and acne breakouts. I have

literally tried everything imaginable by the " BEST " cosmetic companies around.

They don't work. Here is what worked for me......and I share this because not

one person can look at my face and tell I have psoriasis. People don't believe

it, which is fine by me.

Philosophy is a line of skin care products that I use. It is the only product I

use to wash and moisturize my skin. The also have vitamin C scrubs and face

mask that I swear by. You will not use the scrubs or the mask until you clean

up any open sores. These are mild but effective products. They are not

advertised for this use, this is my recommendation only.. Now to work on the

psoriasis (the areas that are red sore and raw) I have two product I swear by,

which can be used on the entire body. I use these on breakouts, when I get

them, to clear them up and go about my regular philosophy routine.

Tea tree oil. This is one of the best healing broducts around. If you use it

straight, be careful of your eyes. I alwas recommend using the ointment which

is basically tea tree mixed with bees wax to hold the skin and help with

conditioning, or mixing the oil with your favorite body moisturizer. Please do

not use anything with an alcohol product or perfum product in it. Keep it as

pure as possible, I recommend L'occitane shea butter milk cream. This is great

for the entire body. I will typically put it on at night before bed and let it

work it's magic over night. I also add socks and/or gloves (but end up kicking

them off in the middle of the night...lol). It may take 2-3 days but it usually

happens quickly. The other product is pure 100% shea butter. My favorite is

L'occitane. Easy to use and moisturizing. Also works well on healing. ALL of

these products are just as effective on men.

Appearances are very important to me, as with most people. I have always been

the woman that gets up every day, does her hair, make up and has her nails done

every 2 weeks. I am happy to say I am still that woman. A few more aches and

pains, and a few more steps in the process, but, I do it. It makes me feel

better. So moving on to make up......once you use all these wonderful products

you don't want to start adding chemicals. So the only make up I use is Bare

Essentials. No oils, binders etc.

Do I never get break outs? I can't say that. There are times when I am just

too tired to do the right thing, and I pay for it. But, all of these products

have allowed me to go out in public, with the same confidence I had pre-PA and

P.

Best of luck.

Penkoff <girlfriendgeneration@...>

May 1, 2008

,

I'm a man. And me, myself having the same feeling as you have. I always think

that having the Psoriatic Arthritis to a woman is exactly as you describe.Much

worse than for us, men. However ,there are few things that you will have to get

used to and love yourself anyway.

Myself, I go to the Dead Sea in Israel for a few weeks every year. There, the

sun is filtered by gases from the Dead Sea. we, Psoriatic

people stay about 6-8 hours in the sun every day.We are naked. Everybody sees

the problem of the other one. No shame. Like a support group.

There are " Solarium " areas for men, women and mixed.

The heat there in very high. It helps the Arthritis. The sun is very strong.

After a few weeks time,one comes out " black " and mainly clean from the

Psoriasis.

I even dare wearing short sleeve clothes and go to a pull after coming home. It

does not last for evere. I have to go there two times a year. Many other people

" catch " the sun much better than me. So they come every few years.

Good luck.

Arie

May 1, 2008

Hi ,

Welcome. I can empathize with the way you are feeling.

My disease started with joint pain and swelling. I never had any

Psoriasis, so my diagnosis took quite long. Finally I broke out in a

rash. I thought it was an adverse reaction to all the pain meds I was

taking and trying to relieve my pain. But No, Lucky for me, it was

psoriasis. This helped to get me a diagnosis and now treatment.

Clearly, you need to take this a step at a time, but getting you a

confirmed diagnosis is the road to start your recovery.

First off, If you haven't been to a rheumatologist, get to one. The

sooner the better. If your diagnosis is confirmed, discuss the

treatment options with your rheumy and your dermatologist.

There are many, some drugs work better for some people than others

and it make take more than I try before you find what works for you.

But, most folks eventually find something that relieves " most " of

their pain and swelling and helps deal with Psoriasis, in some cases

diminishes it almost completely.

The road ahead may be bumpy, but if you stay the course, you'll get

there and hopefully will have less pain & spots by the end.

FYI, 5-6 years ago I was barely walking, most of my fingers and toes

were very swollen, every day was filled with pain. Psoriasis was

there but only scalp and groin were affected.

Today, I take 12.5mg of Methotrexate a week, and am virtually pain

free. I do still have some stubborn patches on my scalp, but that's

the extent.

Stay Well,

May 1, 2008

- welcome to our group. You have found a place where everyone

DOES understand what you are going through! We understand the fear,

the confusion, and the despair.

First off, realize that this is NOT a death sentence. PA is a real

disease and a painful one in more ways than one, but you WILL get

better. It takes time for your dermatologist and rheumatologist to

find the right combo of meds that will help you, but if you and they

are persistent, you will find relief. You are seeing a

rheumatologist, aren't you? If not, make an appointment right away.

They are most qualified to treat PA.

Yes, it is a real disease. It is an autoimmune disease, which means

your immune system is out-of-control and attacking your skin, joints

and connective tissue like tendons and ligaments. It actually has a

genetic basis, but it takes something to trigger it. They are not

sure exactly what all these triggers are, but infections - especially

strep - if often the culprit. Others include contact allergies,

injuries, and severe stress.

I was just diagnosed less than 2 years ago. I was in pretty pitiful

bad shape before diagnosis and for months afterwards. But I

cooperated with my rheumy and things slowly began to get better.

Right now I am doing very well, although this is a disease that

flares and remits in cycles. The last year the flares have not been

nearly as bad as the year before. PA cannot be cured, but it can be

controlled. And the newer meds can actually PREVENT permanent joint

damage!

Depending on your specific case, PA might qualify for social security

disability. I have multiple joint involvement plus pustular

psoriasis on my hands and feet. I was approved pretty fast. I still

hope I might be able to return to work eventually as I hopefully will

continue to improve.

Keep your chin up. You will get lots of helpful info from the people

here.

best regards,

sherry z

May 3, 2008

-,

thanks so much for your response. It means a lot just knowing others

are suffering the same. I was diagnosed yesterday officially. Which

knocked the wind out of me. A life long disease is quite a pill to

swallow. I begin light treatment on Monday. But the dermatologist

only said to come back in 6 weeks, no treatment plans yet. I have to

apply for medical assistance before I can get any treatments or doctor

visits. I'm hoping I can qualify for something. Im getting more achy

by the day. I can't believe how fast this is progressing. I'm

determined to keep active and my spirits up. What else can we do. As

soon as the nasty sores are under control it will be a lot easier to

keep my head up. Good luck with your situation and thank you so much

for replying.

May 3, 2008

---I cant tell you how much I appreciate you taking the time to share

your secrets with me. I am not a vain woman, but having sores all

over my face makes me want to hide in a dark cave. I will try what

you suggested and I have hope that It will help. thank you so much, angela

May 3, 2008

--- Thank you so much. I don't have a rheumatologist yet. Since I

don't have health insurance, I have to wait to qualify for medical

assistance before I can get treatment. Its great to know that there

is hope and that I'm not alone. I feel less depressed after reading

all of the replies from everyone in the group. What triggered mine was

probably, stress. I moved 1400 miles from my home and left

everything. To start a new life near my family. So Im starting with

nothing and then this PA hit. So at a time I need to be the

strongest, is when I'm facing the most adversity. But I will still

succeed. Than you so much, angela

May 3, 2008

, if possible go ahead and make an appointment with a rheumy. It

will be several months before you can get in, and if your

insurance/assistance is not in place by that time you can always cancel

it. But if you wait, it will still take several months from the time

you call. You don't want to waste valuable time while you suffer!

regards,

sherry z

July 20, 2009

>

> My 6 yr old son has just been diagnosed with Aspergers, but the Dr also said

in her next breath absolutely nothing will change because there is no support in

Scotland, so other than going to a NAS group every eight weeks we have no help

or guidance.

What does she mean " nothing will change " ? Does she think your son cannot get

better without--what? I'm not sure what she means, but you can help your son a

lot yourselves, apply interventions yourselves (you'll have to to survive). If

there is " no support " in Scotland, how did he get diagnosed?

> Going through the usual frustrations and joys of a parent of an aspergers

child. The biggest problem we have when we are out is our son " disappearing " we

have done the explaining he could get lost, offered him rewards if he stays

beside us, but none of these seem to work, any ideas would be much appreciated.

My Asperger son is 14 now and all these posts about younger kids bring back dim

memories. I held my son's hand in public sometimes, not just to cross streets

but to keep track of where he was. He took off a few times, but not on a daily

basis. We had to have the police help us find him a couple of times, and I

think we just learned to keep a more watchful eye on him. You get paranoid and

less apt to forget to keep a very close eye on them once you really lose them a

couple of times. We also probably adjusted our lifestyle to where we didn't go

to the types of places he could easily get lost as much.

July 20, 2009

I think we can give you lots of support in our group from

food aversions to social skill development etc.

There is lots to share.

My daughter has no sense of direction and is easily lost too.

One of us follows her and on class trips she has an aide.

We want her to explore the world and she is easily

overhwelmed by the noise, smells and size of groups

so we mostly stick to small settings were it is hard to get

lost.

My daughter also panics when she can't see us so I feel it is cruel to let her

go off on her own anyway.

She is 12 know. Only this summer did I start sending her

off in the grocery store to find something for me specific

(a can of green beans) and she fianlly seems to enjoy trying to

find the food and then me. She could never do any of this before.

Pam

>

> My 6 yr old son has just been diagnosed with Aspergers, but the Dr also said

in her next breath absolutely nothing will change because there is no support in

Scotland, so other than going to a NAS group every eight weeks we have no help

or guidance.

>

> Going through the usual frustrations and joys of a parent of an aspergers

child. The biggest problem we have when we are out is our son " disappearing " we

have done the explaining he could get lost, offered him rewards if he stays

beside us, but none of these seem to work, any ideas would be much appreciated.

>

July 26, 2009

Welcome to our group!! I'm sorry there is so little support over there. As for disappearing, my now 12 yo (hfa) was this way. He was always wandering off for many years. We just got used to always knowing where he is at all times. Unfortunately, that is the best I came up with. We put jingle bells on the doors so they would sound whenever he left the house. You can also get him a kid's cell phone. When he got older, we were able to do this and if we got separated at a store, we could call him. I also taught him safety procedures like how to identify an employee, where to go when he's lost, what to say, etc. If he's good at talking, that may work well. If he's not good at talking to others, then an ID bracelet may help.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Just diagnosed

My 6 yr old son has just been diagnosed with Aspergers, but the Dr also said in her next breath absolutely nothing will change because there is no support in Scotland, so other than going to a NAS group every eight weeks we have no help or guidance.

Going through the usual frustrations and joys of a parent of an aspergers child. The biggest problem we have when we are out is our son "disappearing" we have done the explaining he could get lost, offered him rewards if he stays beside us, but none of these seem to work, any ideas would be much appreciated.

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

March 26, 2010

Alla, I have been on sulfasalazine for almost a year. Have had no side effects

and feel so much better. My doctor says I have a moderate case of PsA, was

diagnosed 4-09. Hope it works for you, as it has minimal side effects and is

really inexpensive. Regards, tracy

March 27, 2010

Alla,

I am on all three drugs not just one. It took 2 months before they started to

work so don't be discouraged at the slow progress. My PA is in both knees and

both feet. Methotrexate gives me nausea, but it goes away after a couple of

days. Because of the medications, I'm 80% back to normal and continue to

improve.

Hope this helps,

March 27, 2010

,

thank you for your reply. As I understand, sulfasalazine does not control

psoriasis. what do you use to control outbreaks? also, are your finger nails

affected? If so, what do you use to treat them?

One of replies I got from this forum was a suggesting to contact Dr. Madelene

Heng. Have you heard of this doctor?

thanks again,

Alla

March 27, 2010

because of your age I think u made the right choice . Save the methotrexate for

later. Also the plaquenil makes some peoples psoriasis worse. also start taking

fish oil ,at least 1000 mg with gla ,a day . You want to take the enteric coated

ones. get the kirkland brand at costco. also consider taking astaxanthin at

least 4 mg a day for your arthritis . it would be good if u could take 4mg in am

and 4 mg in pm . it will help with pain. try adding biotin to your supplements

5000 micrograma a day [not milligramas] the biotin will hlp your hair and

nails.also start taking vitamin d3. This will help your psoriasis mmake sure it

is vitamin D 3.

cathy from ma

August 14, 2010

I too just found out that my 12 year old daughter has Asperger's, along with

Torrets and ADHD. I work in Special Ed and have requested several accommodations

for her. She gets extended time for assignments, less problems, small group

setting for testing and extended time and frequent breaks during testing. In

class she also has to face instruction and has a peer helper. You will have to

have an IEP for all of this but the schools special ed coord can help with that.

Hope this give you some ideas as what to ask for. Good luck.

>

> My 14 year old son was just diagnosed yesterday with Asperger's and OCD.

Although we expected this I still feel like I have been punched in the stomach

and I don't know where to begin. School starts Monday, so I know that I need to

be there Day 1 with this diagnosis to meet with the Special Education

Coordinator. Several people have told me that I need to be prepared to know what

to ask for in an IEP meeting. I am not sure what special considerations would be

most useful in my son's case. I guess my question is, Where do you start? How do

you begin to get through finding the help he needs that the insurance company

will agree to cover? What resources are out there for him? I want to provide him

with every opportunity that I can but I don't even know where to start.

>

August 14, 2010

You need to think about your son and what gets in his way of success in school . My daughter needed a safe place to go if she was melting down, so she got a permanent pass to guidance. It all depends on what he needs. Ask for what will make it easier for him to do what he needs to do and work around his difficulties. From: elaine.fox75 <elaine.fox75@...>To:

Sent: Sat, August 14, 2010 9:00:25 AMSubject: ( ) Just Diagnosed

My 14 year old son was just diagnosed yesterday with Asperger's and OCD. Although we expected this I still feel like I have been punched in the stomach and I don't know where to begin. School starts Monday, so I know that I need to be there Day 1 with this diagnosis to meet with the Special Education Coordinator. Several people have told me that I need to be prepared to know what to ask for in an IEP meeting. I am not sure what special considerations would be most useful in my son's case. I guess my question is, Where do you start? How do you begin to get through finding the help he needs that the insurance company will agree to cover? What resources are out there for him? I want to provide him with every opportunity that I can but I don't even know where to start.

August 15, 2010

This is a last minute situation. As a parent of an Aspergers child this is a

first time situation for you. I would go into this acknowledging that they are

th people who ar paid full time for a living to address the needs of all

children. What do they propose to provide to enable your child to have access to

an education that takes into account your childs diagnosis? You are not under

the gun. They are. We have been susuccessful in gaining a wide variety of

services for our child.I think this has been the case because we expect people

within the school system to do their jobs. In the mean time read up on

everything that you can and go to support groups and use this online resource to

become clear about what your legal rights are and how to make sure that the

needs of your child are respected.

For now set the context for what you expect from them. Your words will carry

weight to the extent that you are committed to following through.

You have alot of support in taking care of your child. Remember that as you go

into the meetings ahead.