to all that have responded

[Guest guest]

I wanted to let you know that I was going to give up on the group. Why you

ask, becuase I didn't feel like I was part of it at all anymore. Mostly

because I can't post daily, I don't have the energy to - I'm not feeling

good enough too and When I do post there are no responses. Yet there are

hundreds of post in between on things not related at all to stills. OT is

fine, But I just felt pushed out and not part of the family at all. You all

need to know this because I'm guessing that there have been others that have

felt the same way and haven't said a thing, they have just dropped out,

which I told I was going to do yesterday. I felt like there were too

many little clicks of friends bonded and that I couldn't break through to

them at all. That when I asked for support it wasn't there, so I would just

get it from my own family and friends.

In over 8 years, I have not have a reprive or remmission at all. Not one

day. I hurt all the time. If it isn't stills or Fibro it's, It's Trigeminal

Neuralgia from Shingles on my face.

Anyway, none of that matters, what matters was that I was asking for help,

and until stepped up to the plate and sad she was sad for the group,

no one responded to us except for one other person. So I felt very

abandoned by this group and I thought I was abandoned.

I really appreciate the responses from those that sent emails in the past

day or so and want to thank you. I haven't really figured out what to do

other than follow my Rheumy's advice in regards to my meds. I don't know

what to do in regards to the group. I have gone through this before with

the group and I honestly can't post every day, but want to be part of the

support family. But if it means that I don't get support because I can't

post daily, then I don't know if I can continue to read all the post. It's

not that I don't love everyone, because I do. It's just that I don't have

the energy and I have to set my priorities. My faith comes first and then

my Husband and family. After that I have the energy for supporting everyone

in this group and I'd love to be a part of it. But if I get nothing out of

it, I have to let it go.

I really do think that most of you understand this. I love you all even

though I have only met one of you in person. I hope that maybe we can make

this group better, focused for what it is suppose to be for. If not, I know

what I need to do. I pray for everyone that has this aweful disease and I

really do hope that things work out positively.

Most of all, I want those of you that have responded to know, that I truly

appreciate all of your support and I thank you for it. I have been so sick

lately. To answer some questions, I have to have the ear surgeries, I have

a cholestatoma cyst in my ear that has to be removed before it gets into my

brain, so the rupture in my eardrum is secondary to the cyst. The second

surgery it so rebuild my eardrum to help improve my hearing from all of the

infections. I'm not looking forward to either surgery, but if I don't do

it, the cyst will get larger and can actually get large enough to break into

the bone that protects my brain (gross, I know). From what I have found

out, I have the best doc in town, so that makes me feel better about it.

I've had one removed before, but it has grown back (just like my tonsils

grew back and I had them out three times). It seems like my body likes to

grow things.

Well, that's it for now. I hope everyone is doing well and want everyone to

know that I think of you all daily.

hugs,