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Hi

You will be in my thoughts and prayers each day. Let us know how you are

doing.

Your friend

Kaylene

>Finally got my results back from my breast cancer surgery and the

>cancer has spread into my lymph nodes. I'll be going through a lot of

>testing within the next couple weeks then start 6 months of chemo

>and 24 radation treatments.

>

>

>

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  • 4 years later...

Oh Ali,

I do understand....i have had my mad times at God too...He is very understanding

and soooo good to us!

You have been and are going through alot...please do not be too hard on

yourself....we are here for you....I hope you have a great trip!

God bless ya!

Larry

---

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Larry, how wonderful to hear from you!  Sounds like you've been through a lot,

best of luck to you and your wife.  I am sure it has been rewarding for you to

return to work, also.  Keep us updated!

 

Gail (KY)

 

Subject: Update

To: " STILLS GROUP " <Stillsdisease >

Date: Friday, September 11, 2009, 6:32 PM

.....BUT. ..today, i feel great!  AND, my wife of 13 years and I seperated in

December of last year....If anyone has further questions, please write....

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,

All I can say is hang in there, hopefully it will all get better so you can

start the Kineret.  Keep us posted.

Gail

Subject: update

To: Stillsdisease

Date: Thursday, September 17, 2009, 7:41 AM

 

Hey all:

Just when I think I am on the way to relief. Wanted to give you all an update. I

was supposed to start Kineret injections and actually have them in my possession

when I get a call from my PCP about lab results late last week with elevated

neutrophil count, decreased lymphocyte count, elevated liver function tests, and

elevated hemoglobin. So now, back to square one. Taking me off methotrexate,

tapering Prednisone, holding Kineret and not sure what is coming next. So

frustrating as I am sure you all know the story all to well.

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  • 3 weeks later...

Rach

 I would leave the house as is so that my boss would know I have been sick and

not playing any games at all . now clean it and that shows you had both time and

energy and a sick mind LOL so leave it alone and forget it for now!

 as for a bady fun well just take it as it happens and ask him what he would

like to do and then try that it may suprise you or plan it out for a later time

with him helpping I bet again you may be suprised by his reaction qand wants. I

know I was a time or two by my kids

so tell your feeling better hugs and still more hugs even when better

 

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.

 

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  • 1 month later...

Amy sorry to hear you have been hit again by the dragon tell the boss

this : ....just feel lucky its not you. ...Liz

update

hello everyone been gone from him for almost 4 months still hurting and not

getting any better waiting on ssi and ssdi and trying to get food stamps he

still put me down and told him this morning to just leave me alone I don't care

what he does or has to say anymore I just want to just give up but I wont I have

to take of my daughter and she means the world to me. Been off work for 2 weeks

had high fevers and very tired and all I did was sleep my bosses were not to

happy with me taking off that long I used up all my sick time.had to get a

doctors excuse and he put on there can not be around kids cause i have no immune

system and my boss could not under stand that well talk to you later and take

care everyone Amy

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Awe Amy,

I'm so sorry things are so hard for you right now. Remember we are here for you.

Our town has a government food share program that dispenses food once a month

without paperwork for low income families. You might want to check that out also

as you wait for food stamps.

Write to me any time for support and caring.

Many hugs,

update

hello everyone been gone from him for almost 4 months still hurting and not

getting any better waiting on ssi and ssdi and trying to get food stamps

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  • 1 month later...

Amy

Thanks for the update and glad you had a goor Christmas and New year .. also

nice to know your daughter is enjoying the sledding wish I could join her as I

love it my self well all but the hard landing they seam to get harder and hurt

more the older I get!

 hugs

 

the redneck

Marty G.

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  • 9 months later...

Shelia,

Wonderful news! Hope it continues, whatever "it" is.

Debbie en 5-7

To: erythema_nodosum_Group Sent: Fri, October 8, 2010 4:11:52 PMSubject: update

I haven't posted anything in a long time; mostly because I stay very busy. I hope this encourages someone out there.I have suffered with EN for over 13 years. I work in a small hospital and have had the ER nurses talk to me about abuse and try to help me (because of the bruising). I have been sent to our sick clinic on many occasions because I look so pale and sickly. They finally stopped seeing me and just accepted I sometimes have bad days. I have been to doctor after doctor without any resolution, and taken prednisone to the point I have actually began to shrink (I lost 2 inches last year).I had totally given and swore I was not going to go see another doctor for anything. However, I was forced to due to massive headaches that was affecting my vision.I went to a NP in the clinic I have always gone to, but had not seen before. I didn't mention my EN because I didn't want to open

that can of worms. She, however, read my chart and inquired about it. After discussing my misery with her she looked back at my previous workups and decided to check my thyroid. She also put me on massive medicines to clear up my head, one of which was prednisone again.I can't explain why, but this time, the prednisone worked. The lumps went away. The pain has went away. I actually have color to my face!! I feel so new. I had not been in remission for over 10 years!I don't know if my thyroid disorder is causing this or not, but I am certainly enjoying life while I can!!!Don't give up!!Sheila

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  • 3 weeks later...
  • 3 months later...

In summer I walk on flipflops....(in winter on ugly crocs )Sent from my iPod

Last Friday my doc prescribed Tramadol for pain. It seems to be working pretty good. Of course it isn't going to make the problem go away so now she is sending me to a dermatologist on Wednesday. If anyone has any ideas for me please let me know. I am going to push for a tissue biopsy first thing. My right leg is much better but my left leg is swollen and it seems to be in my ankle and down by my toes now. Left ankle is MISSING in action and toes are swollen big time. UGH ! The only winter shoes that fit are my ugg boots and they are tight. YIKES !

I am thinking the ugg boots will be very attractive this summer with shorts and sundresses. I have to get better soon. I know you all have been in this mess so any suggestions will be greatly appreciated.

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  • 4 months later...
Guest guest

Hi all, My doctor thought that gluten held the key to causing my EN Flares and was contibuting to my pain. I was so sad to hear that gluten was not a contibuter to my EN. It would have been nice to know something. Lately, I am in pain daily and ridden with ostoarthrisis that was caused by the steroid treatments over the course of 20 years. My bone density test showed bones of an 80 yr old and I was told that if I fall I would break a bone and need a new hip. For those of you that don't know me, I am 35 years old and have struggled with EN for 20 years. No triggers, but I do believe mine is hormonal and stress related.The testing i have had show low iga, meaning I have a low immune system. Also, I am Pretty sure RA is a major factor. To contol my pain indocin, vicodin, ibprophen, cymbalta help. But, what a way to live. I cannot get out of bed without a pain medications. Please, watch out for the steroid use. They have long term effects that are worse than the EN. Love, AJ Anjanette Viviano Sent from my HTC on the Now Network from Sprint!

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