Marty

[Guest guest]

Marty..... re: Walnuts.... don't you use a nut cracker? It designed to

crack walnut shells ya' know.... I used to be able to crack a walnut by

squeezing one against the other...(when I was yound and strong)

The hardest nuts to crack I think are Brazil nuts...

love jerry

[Guest guest]

Jerry:

You're a hard nut to crack yourself!!! LOL

No, the walnuts are encased in a thick green fibrous covering. You have to break through that and then you get to the nut itself, which has to be cracked open. They are really pretty and fragrant in their green covers. The insides stain everything they touch a deep brown/black.

Marty

-- Re: [ ] Re: Marty

Marty..... re: Walnuts.... don't you use a nut cracker? It designed tocrack walnut shells ya' know.... I used to be able to crack a walnut bysqueezing one against the other...(when I was yound and strong)The hardest nuts to crack I think are Brazil nuts...love jerry

[Guest guest]

Marty.... my mistake... I'm sorry... I am not familiar with black

walnuts....I didn't realize they were that different from regular

walnuts...my bad.

I guess I am a tad nutty but actually I'm easy to crack....or I guess

I'm just plain easy.. (so I've been told)

I'll stick to peanuts ...I can open them.

love jerry

[Guest guest]

Marty,

No, I have been very lucky. The only pain I have is when they try to lower Prednisone below 5 mg's. Looks like that's out of the question now. I am just very tired and having a lot of fluid retention. I may up my Lasix and Spironalactone tomorrow if it doesn't improve. I do want to talk with MD though before doing this. He lets me adjust some on my own based on the amount of fluid if things are going well but I am very reluctant to do this now with all this stuff happening at once. I had labs done today and will find out results tomorrow. Thanks for asking. Hope you feel better soon.

[Guest guest]

Marty,

I know the feeling. I went outside today and was looking at my reflection in the windows (profile, not a good thing to do these days) and I thought, Oh my Lord I look 6 months pregnant. It really is shocking. I know I got lots of looks because people are wondering what this pregnant woman is doing outside smoking. This is the last vice I have and I know that I have to quit but to much is happening to fast right now.

On top of all of this my son broke his hand last week and is in a cast and unable to work is normal job.(Landscaping) On top of this his grandfather (Dad's father) passed away today after a long struggle with cancer. The kid is really getting hit hard. News that Mom's getting listed for transplant, grandfather's death, Dad just got married 3 weeks ago to a woman he's only known 6 months (Third wife). No wonder he punched something and broke his hand. I'm worried about him. He's so young and is trying so hard to be a man but he's got a lot on his plate.

I hope you feel better soon and the massage sounds wonderful. Maybe I'll try it. My platelet count is so low I will probably come out looking like I've been beaten.

[Guest guest]

:

My abdomen remains swollen, tight, uncomfortable today. It still hurts to breath. I will call the doctor again tomorrow. I am only on 50 of Spironolactone plus Hyzaar 2 a day. I don't know the mg.s Also taking K+ and am drinking quinine right now with fresh lime. Took a hot bath with sea salt this morning. I got a massage today and I couldn't roll over on my belly, so she did some direct abdominal work with heated sand bags and gentle manipulation. I felt really good when I left there. My right calf is still all cramped up. I think I need more meds. BP is 136/90 - not too bad.

Thanks for listening.

Marty

-- Re: [ ] Marty

Marty,No, I have been very lucky. The only pain I have is when they try to lower Prednisone below 5 mg's. Looks like that's out of the question now. I am just very tired and having a lot of fluid retention. I may up my Lasix and Spironalactone tomorrow if it doesn't improve. I do want to talk with MD though before doing this. He lets me adjust some on my own based on the amount of fluid if things are going well but I am very reluctant to do this now with all this stuff happening at once. I had labs done today and will find out results tomorrow. Thanks for asking. Hope you feel better soon.

[Guest guest]

Hello Patty !

She sent me several very sweet notes in times that I needed them. My heart also aches

with her news but I'm grateful that I did get to know her for the brief time that I did. As for

myself even in the mist of this I try to make the best of each day and when is a bad day

with lots of nausea I still can find something precious about the day. My doctors continue

to try to plant in me the possibility of my passing but I know that is God's to make.

In Honor and Rememberance of Marty Our Beloveth Friend I send this picture.

Love Always,

Tony

[ ] Marty

Ever since I read the note from Marty's husband Ed earlier tonight, I haven't been able to get it off my mind. We talk about our challenges with AIH and our frustrations with the inability to control our symptoms. We want to be able to do something ourselves to control our disease, and in the absence of that, for our Doctors to be able to solve all our problems and get frustrated/angry when they don't. The bottom line is that I believe there is a force greater than us that individually/collectively determines what will happen. What we can best do is to treat ourselves and those around us with kindness, humor and sensitivity. Marty always showed this and I find her death really sad.

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Sunday, August 10, 2003 4:05 PM Subject: [ ] limiting activities

It is often hard for anyone doesn't either have a chronic illness themselves or a loved one who deals with a chronic illness to understand the fatigue that so often goes along with chronic illness. Those of us who do deal with this know the price we often pay for overdoing it. That price can range anywhere from a day of being more tired or having more pain than normal to a long hospital stay. Often people take things too personally when you turn down an invitation. At first I felt like I had to explain myself. However, I often think when you try to explain yourself, it only makes things worse. The people who feel you owe them an explanation when you turn down a social invitation will never understand anyway, so why waste your energy trying to explain things. The people who do truly love and care for you and have some understanding of what dealing with a chronic illness entails would never ask for or expect an explanation. They immediately understand that it is nothing personal when you must decline. They also understand that even if you must decline 99 times out of 100, you still appreciate them thinking of you and the invitation. They understand that you may very well still want them to extend the invitation so that the 1 time out of 100 when you are feeling well and have the energy, you can participate in social activities, outings, or just life in general.

There will always be those who just cannot understand why we can sometimes manage a day full of activities and other times even a 30 minute trip to Walmart is more than we can handle. I've had a friend tell me on several occasions that

'it's not like you really have to do anything, it's just a movie'

or 'it's just going to dinner'

or 'sit around at my house just the same as you can at yours'.

This was the friend that I really felt like I had to try and explain myself to.

I finally quit trying. If I don't feel like accepting an invitation, I simply say no and leave it at that. I don't owe anyone an explanation! This friend doesn't seem to get it that family activities come ahead of simple social activities. I can't help that. My family (and extended family) do come first. When my daughter is home from college, I may push myself a bit harder so that I'm up to dinner out, a short shopping trip with my daughter, etc. If it's Father's Day, Mother's Day, a family member's birthday, etc., I may also push myself a little more than I would if it was simply an invitation to dinner with my parents, sis, etc.

I really do consider this friend and her husband and kids almost family. We include them in many family get togethers. I pushed myself to see to it that I was at her little boy's birthday party and that I brought my nephew (they are both 7 and only 3 days apart and they both play so wonderfully together that it is really fun to have the two of them together) to the party because my brother-in-law was out of town on a business trip and sis had already committed to a scuba diving class. I thoroughly enjoyed the birthday party (as did my nephew) but by the time I'd spent 4 hours outside at a kids' party, I was pooped. You know the drill -helping to see the kids got fed, intercepting disagreements, just typical birthday party stuff. My friend was not at all happy that I didn't want to go out for dinner and a movie that evening. This was one of the times that she told me 'it's not like you have to do anything physical, it's just dinner and a movie, you just have to sit there.' I told her I was tired, my nephew was tired, and the only place I wanted to sit was curled up in my recliner with my jammies on and my electric throw to keep me warm! Now, mind you, in addition to just dealing with the fatigue of several chronic illnesses, I'd had my nephew the previous night, also. We had been at my friend's house til midnight. After we got home, my nephew had some sort of allergic reaction and had problems breathing. (my sis had him tested for allergies after this and we found he is very allergic to bees and fire ants. we think he probably got bit by fire ants or something because he had welts all over his legs the next day. He now has to have an epi-pen at all times as they said the reactions will likely be worse the next time.) He was fine after I got him to sit up and gave him benadryl. However, I was concerned so I laid with him and watched cartoons til after 3 in the morning. It was around 4 a.m. when I got in my bed and I probably only slept a couple of hours.

Anyway, this was one of the last times that I bothered trying to explain why I didn't want to accept an invitation. Once I quit trying to explain myself, my friend finally got the hint and now when I decline she just accepts it and doesn't press for a reason or try to tell me why I ought to be able to do whatever it is she wants me to do.

My whole point to this is that if other people want to think you are selfish for saving your energy for the things that are most important to you and your loved ones, then so be it. Perhaps if they walked a week in our shoes, they might begin to get it. Until then, quit worrying about what they think! Some people get it and others just never will!

Hope this finds everyone having a good weekend and able to do some of the things you'd like to do with family and/or friends.

W

[Guest guest]

Hi Marty...

Perhaps you should get a second opinion. Bill s did a

fellowship at UCSF, so has certainly seen a lot of flatback.

http://orthodoc.aaos.org/WsMD/

Regards,

[Guest guest]

Hey , Thanks for the brute comment! It's way too long of a

story to get into here, but couldn't help " flashing back " and getting

emotional with talk of hubby's and their questionable abilities to

understand. Tho' I think brute is too good a word for him, since it

insinuates strength... lily-livered twerp might be better! Take care,

girl! smiles, Marty

>Marty, >Oh how horrible for you. I am going to call him a

brute, if you don't mind...

[Guest guest]

Marty,

Can I just say your ex husband sound like an utter jerk?

After reading your story the only comment that seems appropriate is

what you probably already know....stuff happens for a reason and

sometimes it just takes time for the reasons to be revealed. You are

well rid of the selfish, self centered, dickhead. I sincerely hope you

are on an upturn and your life begins to fill with all the love and

kindness you can handle.

Better days are ahead, Cam

[Guest guest]

Hi Cam, Thanks for everything. I am grateful for this " haven " of

understanding souls. I enjoy your posts. Marty

--- " cammaltby " wrote: Marty,

> Can I just say your ex ...

[Guest guest]

Thanks . Now if I could just draw some Dr.Seuss-type pics to

accompany it! Take care, Marty

--- " redmarmie " wrote: ...just loved your Humpty story.

[Guest guest]

, Suzie - Thanks so much. Lobster was great! As was the

chocolate/chocolate cake with ice cream later that evening! ...and the

next day... and the next day! Next big dealio in my life: when

goes off to camp July 8th, I am planning on going to California again,

by car this time. Will be picking up my Mom in Costa Mesa and

trekking back up to see Shayla in San Ramon. Maybe see the Winchester

House... and definately take my mom 'round San Fran sites. May try to

meet (note to self: bring her INFO with me!)... or any of you

other California gals and guys! Night, Marty

[Guest guest]

Happy belated bday, Marty!

kam

[Guest guest]

Marty,

It has been a long time since I have heard from you. Sounds like you are

having problems. My health has really gone down now but try to keep going.

Jimmy wanted me to go To Iowa to be with his family this week but due to health

I just could not go and he decided not to leave me.

Things are about the same around here except for my health failing more.

I am so limited to what I can do. I look at things and say to my self I just do

not have the strength or if I did do something I pay for it with pain so bad for

about 2 weeks.

Would love to hear from you as we use to keep in touch. Take care and

email if you want to. Blessings, Zoella

" The only people to get even with are those who have helped you. "

When He was on the cross....You was on His mind

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

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

Dear Marty, I am so sorry noone knew about your Birthday.So Happy Birthday,iI

wish it was a happier one for you.Hopefully something good will come your way

soon.I am so glad you have an understanding wife,it's more than many here

have.You are a great guy and I know things will look up for you soon.

love Elly

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

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

[Guest guest]

Dear Marty, I am so sorry noone knew about your Birthday.So Happy Birthday,iI

wish it was a happier one for you.Hopefully something good will come your way

soon.I am so glad you have an understanding wife,it's more than many here

have.You are a great guy and I know things will look up for you soon.

love Elly

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

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

[Guest guest]

Elly:

thanks but it is no biggy as for some reson mine never has shown up LOL kind of

nice that way I do not get older hereLOL

the rest yes i am very lucky to now have a very wonderful and uderstanding wife

sure bets the heck out of the last one LOL

hugs all

Marty the calif redneck ( a bit sad thou)

RE:Marty

Dear Marty, I am so sorry noone knew about your Birthday.So Happy Birthday,iI

wish it was a happier one for you.Hopefully something good will come your way

soon.I am so glad you have an understanding wife,it's more than many here

have.You are a great guy and I know things will look up for you soon.

love Elly

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

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

[Guest guest]

Elly:

thanks but it is no biggy as for some reson mine never has shown up LOL kind of

nice that way I do not get older hereLOL

the rest yes i am very lucky to now have a very wonderful and uderstanding wife

sure bets the heck out of the last one LOL

hugs all

Marty the calif redneck ( a bit sad thou)

RE:Marty

Dear Marty, I am so sorry noone knew about your Birthday.So Happy Birthday,iI

wish it was a happier one for you.Hopefully something good will come your way

soon.I am so glad you have an understanding wife,it's more than many here

have.You are a great guy and I know things will look up for you soon.

love Elly

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

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

[Guest guest]

JB as for the past I cannot deny the problems that existed but believe it is a new day and we have an opportunity to make some things happen today. I am no being naive but if the researchers work with AS and make sure the grant process goes smoothly via frequent communication they will have a real chance of success for some good projects. That is how the genetics researchers do it.

Given the critical nature of this issue I would suspect giving it another shot would be a good choice. Of course this will be the real test for AS and the world can see the process in real time and then factually we can judge.

Marty>> Marty:> > You are by far the most reasonable and moderate voice I have ever > encountered from NAAR and you don't believe your child was vaccine > damaged and you don't follow the DAN! protocol.> > And, that right there is the problem with Autism Speaks. A guy who, > compared to many on this board, is not really in our camp can't > stand Autism Speaks - how in the world will our POV ever be honestly > explored by them?> > I have spoken with many of researchers in our camp. A number of them > submitted proposals to Autism Speaks. They were ALL TURNED DOWN>> > At this point, their position is: why bother with submitting > anything? The proposal process is by definition political, and they > understand the ideology of the SAB at Autism SPeaks making all the > decisions.> > Autism Speaks is not going to ever embrace exploring true > environmental cause and biomedical intervention with the current > cast of characters running the place - they all have too much to > lose!> > JB>

[Guest guest]

But Marty, they've had two years+ and $60,000,000 and countless TV

time to show even an inkling of entertaining the biomedical

approach. Even if you REALLY wanted to debunk the biomed approach,

if you believed with your brain, heart and soul that biomed is

bullpuckey (I was told JB owns horsepuckey) you'd allow the research

so you could official proclaim it dead and put the issue to rest.

Unless you were are terrified it might be bone fide, in which case

you'd do what CANAARSPEAK? has done since its inception. Deny the

grants for research, shut down the opposition, cover your ears with

genetic ear muffs and sing " la la la I can't hear you! " and ice the

cake by running a public letter denouncing the biomedical approach

taken by the daughter of your founders.

At 1 in 150 how many kids have been diagnosed since AS came into

being? How many kids has NAAR recovered over the years? A big fat

goose egg? Or even attempted to recover? How many dollars of the

millions raised by " walking far " helped families avoid divorce or

battle school districts for FAPE? Have you created subsidized speech

and OT centers or helped pay for the private schools the Alison

Singer's of the world can afford by virtue of their salaries, or made

sure families had enough money left over at the end of the month to

buy that last bag of groceries to stretch to pay day? Autism

fincially ruins families. I know. I have a photo of a beautiful home

that used to be my own. It hangs in my cheesy rental house.

What have the millions your organization raised and spent done to

make the life of ONE autistic child improved? Or do you, Marty, like

the neuros and the psychs believe there IS NO POOSSIBLE IMPROVEMENT

for our children? Do you believe our children are lost causes? Will

AS fund guns so we can take our kids out back and shoot them?

Because I wonder, what the hell will happen to my beautiful girls

when I am too old to care for them. I worry every day. So I damn

well better do everything I can do FIX THEIR ISSUES to the best of my

and their ability. I OWE MY KIDS THAT. AS can help me. I know they

can. So far they choose not to. Suzanne likes to say " Autism

knocked on the wrong door. " REALLY? Doesn't she mean " The

Spontaneous Genetic Mutation " that has similarly affected tens of

thousands of kids " knocked on the wrong door?

" You can only hope to make an autistic person's life more

comfortable. " I will never forget those words handed to me by a

neuro. Ever. They feed my passion every day like raw meat to a

lion.

Growl.

KAKRS

[Guest guest]

" Or do you, Marty, like the neuros and the psychs believe there IS NO

POOSSIBLE IMPROVEMENT for our children? Do you believe our children are

lost causes? "

I think you know nothing about how I feel nor care as you apparently to

have all the answers.

Clearly ther is nothing more to discuss with me.

Good Luck

Marty

>

> But Marty, they've had two years+ and $60,000,000 and countless TV

> time to show even an inkling of entertaining the biomedical

> approach. Even if you REALLY wanted to debunk the biomed approach,

> if you believed with your brain, heart and soul that biomed is

> bullpuckey (I was told JB owns horsepuckey) you'd allow the research

> so you could official proclaim it dead and put the issue to rest.

> Unless you were are terrified it might be bone fide, in which case

> you'd do what CANAARSPEAK? has done since its inception. Deny the

> grants for research, shut down the opposition, cover your ears with

> genetic ear muffs and sing " la la la I can't hear you! " and ice the

> cake by running a public letter denouncing the biomedical approach

> taken by the daughter of your founders.

>

> At 1 in 150 how many kids have been diagnosed since AS came into

> being? How many kids has NAAR recovered over the years? A big fat

> goose egg? Or even attempted to recover? How many dollars of the

> millions raised by " walking far " helped families avoid divorce or

> battle school districts for FAPE? Have you created subsidized speech

> and OT centers or helped pay for the private schools the Alison

> Singer's of the world can afford by virtue of their salaries, or made

> sure families had enough money left over at the end of the month to

> buy that last bag of groceries to stretch to pay day? Autism

> fincially ruins families. I know. I have a photo of a beautiful home

> that used to be my own. It hangs in my cheesy rental house.

>

> What have the millions your organization raised and spent done to

> make the life of ONE autistic child improved? Or do you, Marty, like

> the neuros and the psychs believe there IS NO POOSSIBLE IMPROVEMENT

> for our children? Do you believe our children are lost causes? Will

> AS fund guns so we can take our kids out back and shoot them?

> Because I wonder, what the hell will happen to my beautiful girls

> when I am too old to care for them. I worry every day. So I damn

> well better do everything I can do FIX THEIR ISSUES to the best of my

> and their ability. I OWE MY KIDS THAT. AS can help me. I know they

> can. So far they choose not to. Suzanne likes to say " Autism

> knocked on the wrong door. " REALLY? Doesn't she mean " The

> Spontaneous Genetic Mutation " that has similarly affected tens of

> thousands of kids " knocked on the wrong door?

>

> " You can only hope to make an autistic person's life more

> comfortable. " I will never forget those words handed to me by a

> neuro. Ever. They feed my passion every day like raw meat to a

> lion.

>

> Growl.

>

> KAKRS

>

[Guest guest]

No, I'm really asking the question because you are the source. I've

never had the opportunity to talk to anyone who has had the influence

you've had. If you go that far back w/ NAAR you're a treasure trove

of perspective. If I'm dead wrong tell me. I'm happy to listen. I

don't think AS is listening to a large portion of the community right

now. I'm fairly even keeled in keeping my mind open. Even if my

questions exude more passion than I mean to.

Yours,

KIM

> >

> > But Marty, they've had two years+ and $60,000,000 and countless TV

> > time to show even an inkling of entertaining the biomedical

> > approach. Even if you REALLY wanted to debunk the biomed approach,

> > if you believed with your brain, heart and soul that biomed is

> > bullpuckey (I was told JB owns horsepuckey) you'd allow the

research

> > so you could official proclaim it dead and put the issue to rest.

> > Unless you were are terrified it might be bone fide, in which case

> > you'd do what CANAARSPEAK? has done since its inception. Deny the

> > grants for research, shut down the opposition, cover your ears

with

> > genetic ear muffs and sing " la la la I can't hear you! " and ice

the

> > cake by running a public letter denouncing the biomedical approach

> > taken by the daughter of your founders.

> >

> > At 1 in 150 how many kids have been diagnosed since AS came into

> > being? How many kids has NAAR recovered over the years? A big fat

> > goose egg? Or even attempted to recover? How many dollars of the

> > millions raised by " walking far " helped families avoid divorce or

> > battle school districts for FAPE? Have you created subsidized

speech

> > and OT centers or helped pay for the private schools the Alison

> > Singer's of the world can afford by virtue of their salaries, or

made

> > sure families had enough money left over at the end of the month

to

> > buy that last bag of groceries to stretch to pay day? Autism

> > fincially ruins families. I know. I have a photo of a beautiful

home

> > that used to be my own. It hangs in my cheesy rental house.

> >

> > What have the millions your organization raised and spent done to

> > make the life of ONE autistic child improved? Or do you, Marty,

like

> > the neuros and the psychs believe there IS NO POOSSIBLE

IMPROVEMENT

> > for our children? Do you believe our children are lost causes?

Will

> > AS fund guns so we can take our kids out back and shoot them?

> > Because I wonder, what the hell will happen to my beautiful girls

> > when I am too old to care for them. I worry every day. So I damn

> > well better do everything I can do FIX THEIR ISSUES to the best

of my

> > and their ability. I OWE MY KIDS THAT. AS can help me. I know they

> > can. So far they choose not to. Suzanne likes to

say " Autism

> > knocked on the wrong door. " REALLY? Doesn't she mean " The

> > Spontaneous Genetic Mutation " that has similarly affected tens of

> > thousands of kids " knocked on the wrong door?

> >

> > " You can only hope to make an autistic person's life more

> > comfortable. " I will never forget those words handed to me by a

> > neuro. Ever. They feed my passion every day like raw meat to a

> > lion.

> >

> > Growl.

> >

> > KAKRS

> >

>

[Guest guest]

>

> But Marty, they've had two years+ and $60,000,000 and countless TV

> time to show even an inkling of entertaining the biomedical

> approach. Even if you REALLY wanted to debunk the biomed approach,

> if you believed with your brain, heart and soul that biomed is

> bullpuckey

Kim,

Aside from the personal beliefs and practices of Marty, it would be

good to get some verification about what is or isn't happening with

London, environmental research and Autism Speaks.

Lenny

[Guest guest]

I'm sure Marty can speak for himself, but I don't recall on this

thread him ever saying he totally agreed with NAAR or that he wanted

to disprove DAN! or biomed. I think what he said was that it (biomed)

didn't work for his child (unfortunately doesn't work for every

child), but that he knows many it (biomed) has worked for, and that he

thinks both genetic research and biomed have a place, and even asked

for anyone who had a proposal to submit it & he'd try to see it go to

the " right " person at AS. Seems to me like all worthy comments.

Sounds to me like Marty is a reasonable person, I don't understand why

he's getting blasted.

Debi