Encouragement

February 17, 1999

Hello Joy,

Thanks so much for your encouraging note! That was so nice of you! It is so

wonderful to hear about another success story. Amber must be a very happy

person, having been through so much in the past and now being able to enjoy

life to the fullest, without needing any more medicines! I think that's

great.

You mentioned that she is in the normal height range, for her age group. I'm

curious ... did she used to be on the small side or was her growth okay

during her active periods of jra, too? My son has not been growing for the

past three and a half years. I always wonder about what might happen if he

can get into a remission. Will he have a major growth spurt or will he

always be smaller, unless we try the Human Growth Hormone therapy that has

been suggested? What happened in your case?

Do you guys still see a rheumatologist every now and then or is that a thing

of the past, too? When your daughter catches a cold or viral infection, she

doesn't have any relapses? No more arthritis fevers or rashes, even? Lately,

on the other mailing list I'm on, I've been hearing from so many people who

had stills as a child, went into remission for many years and as adults, get

it back again. That sort of troubles me. But we do have to remain

optimistic, hope for the best outcome, and appreciate every single good day!

Well, you don't know how nice it is to hear from someone who's been there,

done that, and overcame the struggles. I hope that Amber will remain

symptom-free forever! And that the rest of our kids will someday be in the

very same position. Thank you for reminding that it is possible not only to

treat this illness but also to overcome it ..... and for giving us all some

more optimism and hope :-)

Take Care,

Georgina

February 17, 1999

Hello Joy,

Thanks for the optimistic mail.

I just wonder, did your daughter have the systemic type of JRA? Also: did

she have many joints affected?

Regards

Helge

----------

> Fra: Joy Maxey Fulford <snet0082@...>

> Til: onelist

> Emne: [ ] Encouragement

> Dato: 16. februar 1999 21:18

>

> From: Joy Maxey Fulford <snet0082@...>

>

> My name is Joy and I am new to the list. I would like to offer a word of

> encouragement to everyone. My daughter, Amber, was

> diganosed with JRA in Feb. of 1989 - she was almost 3 years old. She

> has gone through prednisone, tolectin, naproxsyn, folic acid, gold

> therapy, calderol and methotrexate. Also leg braces, casts,

> hospitalization because of her suppressed immune system, etc., etc.,

> etc. Needless to say she has had many rough years! Now the good news!!

> She has been in remission for 3 years and med. free for 2 years. She is

> a normal height and weight for a 13 year old and to look at her you

> would never know that she had been so ill at one time. She swims, ice

> skates , rollerblades, rides her bike, dances, and anything else she

> wants. Although walking and shopping at the mall are her favorites! So

> as you see there is a light at the end of the tunnel!! Hope this helps.

>

> Keep the Faith --- Joy

>

> ------------------------------------------------------------------------

>

December 6, 1999

Bonita

Don't know what happened to the news story. I guess it was just local. We

need to get someone national who will stay with it. Even though Tom didn't

get to be as public as we wanted it will come. In his e-mail he didn't tell

one of the OSI agents is the OSI commander at Pat. Amazing he can

draw that many agents. Must be someone is scared of the truth. We are

talking to Louis Font now. When I went to bed last night Tom was drenched.

It seems like this last month his symptoms are getting worse. Employment

group sent him to a specialist who has some knowledge of the anthrax vaccine

and he stated it strippes away the nerve lining. He is going for an EMG and

it looks like surgery because in two months he has lost the partial useof

his hands and the one is really bad. Now he is telling me his toes are

going numb. They are trying to force Robyn to start taking the shots again

even with a waiver. I don't know if it is coming from the base or above.

Tom enjoyed talking to you both. Matt talked to a Lt. Commander from the

Pentagon and she told him the navy recruiter was lying and her statement was

they were trying to educate the recruiters about the anthrax. Your notes

always perk me up. Have a great day and keep praying.

December 7, 1999

FYI.... I believe Vince has been keeping up with this whole issue

from Day 1. (CBS National)

<< Even though Tom didn't

get to be as public as we wanted it will come. I >>

June 11, 2000

In a message dated 06/10/2000 9:15:10 PM Pacific Daylight Time,

KAustin23456@... writes:

<< And me without any one to tell me what to do about it. >>

Ah sorry your feeling bad. I think you are going through your first

Herx! Congratulations the treatment is working. I you want to feel better

tempory you can cut back on the antibiotic, or you can go through it if you

can. Better people than I here on the list can advise you. This is a good

time for rest, ordering out drink lots of water, and hunkering down, and get

some pain meds if you need em. Once the herx passes you will feel better than

you have for a long time. Herx's last different lengths of time for different

people I had them from 3 weeks to 8 weeks. However once you are through it

you will feel much, much better.

So have hope, OK. Your on your way to getting better. It is a good sign.

June 11, 2000

,

I am sorry you are feeling so terrible and hope you get buckets of support

from rheumatic. Long before I had RA I had the throat constriction problem

and couldn't wear any clothing that even touched the front of my throat. I

had undiagnosed thyroid disease which is controlled now. Perhaps you

could get your thyroid tested just to be sure. I fired my pill dispensing

RD too as a lot of us have and we are winging it with our gps also.

Hope you feel better soon.

Bev

>Hi group,

>I am definitely in need of encouragement tonight. I have been on AP since

>March. I have had Lupus since 1982, polymiocytis since 84. Several other

>diseases thrown in there. Every new doc means a new dx. I really thing

they

>are all the same disease, just manifested differentely for different

people.

>I have been feeling rather well on AP and was really quite proud of myself.

I

>had taken myself off of methotrexate 5 weeks ago and was doing fine

without.

>I told my GP that on Tues and I fired my rheumy on Friday. By Friday

evening,

>I was having major difficulty swallowing. This was the symptom of the

miocyts

>that sent me to methotrexate 4 years ago. I am very discouraged and

nervous.

>I now have no rheumy to folloow me and I'm afraid if I tell my GP that

June 11, 2000

Hi : My experience with dysphasia was due to Myasthenia Gravis. It is

a classic symptom of that and caused me a lot of difficulty before getting

diagnosed (took 3 yrs.). I am not suggesting you have MG - just relating my

experience. However, it is a highly misdiagnosed illness. I went through

the typical " anxiety disorder " diagnoses by a fair share of insensitive,

moronic " doctors " who fed me lots of Xanax. If you would like more info,

feel free to e-mail me.

Hang in there.

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

April 16, 2001

> Traci,

This is week 8 for me. I have been following the book, with meal

replacements but no other suppls. I have definitely made

changes already within 8 weeks. I have always done weights,

run, biked, and I have a whole collection of Firm videos (and

others) that will be in my next yard sale. Anyway, I have made

more dramatic results in these eight weeks than in years of my

workout (high cardio, low weights, high reps). Give this a try,

follow the book, feel the muscle working when you lift and you

will get results. I have been faithful to myself and this workout

with only 1 missed workout. I cannot wait for the next four weeks

because I'm sure I will improve further. By the way my biggest

motivator is my b4 pix---ughh!!! I started a size tight 8 loose 10,

and I'm comfortable in a 6 right now. Reached one goal, 2 more

to go-al. HA!

Dianne

April 16, 2001