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Comment by Yvette on November 9, 2009 at 4:00pm

I don't know if I belong here or not anymore as I have a diagnosis here but not a second to confirm..how common is it to get knocked around like a ping pong ball when you are trying to get doctors to agree or at least treat you?

Comment by Pamela Davis (Potter) on November 3, 2009 at 1:52pm

On a lighter note!!!!!!
I love California... Especially San Fran and Orange county. Georgia is great and green. I live just north of Atlanta. I love my job, and can't imagine having to give it up. I normally fly international trips, but since this diagnoses I've been advised to stay away from certain countries (India, Tel Aviv, Africa, etc)...all of course are my favorite places!

However, I would like to know the best excercises and other things that I can do to feel better. Thanks Ladies

Comment by Pamela Davis (Potter) on November 3, 2009 at 1:42pm

Hi, Kathy
Just returned home from doing errands. Happy to see your email. Went to the gym this morning. Haven't been for a long while. I thought I was having a great day, until the pain in my arm started again. I'm on plaquenil 200mg- twice a day (morning/night)...folic acid 1mg-once a day..Nexium 40mg-once a day... and vitamin D 50,000IU-from once a week to once a month.
There has to be something better. Any ideas...anybody???
I haven't been in pain for a couple of weeks, until now. And its only my left arm. It's weird. I'll speak with my Rhuemy tomorrow morning.

Comment by Kathy on November 3, 2009 at 8:58am

Hello Pamela!
I'm Kathy (founder) It's nice to meet you! Flight attendant..wow!
What state is the prettiest and has the nicest people?? It sure isn't California! It's dried up polluted and gang bangers. (it's the truth)
I've seen Georgia on TV (The Housewives of Atlanta) It sure is pretty where you are at.
Welcome aboard, anything you need help with, I'm just a click of a keystroke away!

Comment by Pamela Davis (Potter) on November 2, 2009 at 5:40am

Hi, everyone
I'm not sure where everyone resides, but I'm in Alpharetta, Georgia..Just north of Atlanta. I travel a lot. I'm a flight attendant for Delta and it would be great to make new friends.

Comment by Yvette on October 24, 2009 at 9:55am

I just found the different groups. duh, I am electronically challenged. My story is posted already on "introduce yourself" on the main page. So, to keep redundancy to a minimum..after many years of feeling cruddy and a diagnosis of fibromyalgia..a miracle happened. I got diagnosed with thyroid cancer in 08, went through all the stuff for that. I believe the treatment which is sipping radioactive iodine through a metal juice box really tripped my immune system wires. I never got back to my normal which was feeling cruddy off and on with periods of relative, wellness. My rheumy did a complete bloodwork up for all rheumy stuff and he dx me with U.C.T.D. I am seeing a top doc in Boston on 11/3 for second opinion and hopefully meds to help me. I am scared a bit of methotrexate or plaquenil because me and meds do not mix well. I have unusual side effects to anything. In 2/09 I had pneumonia and I thought Levaquin was going to kill me. I was nauseous all the time, diahrea and I lost 8#'s in 10 days. Does anyone else react to almost anything they take that is new? Yvette

Comment by Kathy on October 8, 2009 at 11:51am

Hello April!
Welcome!

Oh geez how do I cope..
Well before I was diagnosed and not knowing what was wrong with me, my symptoms were treated and I slept a lot, I had migraines from hell and the nausea was just terrible!.

Now that I am diagnosed my symptoms are being treated by a different Dr. I have some really bad stress in my life right now (marital problems) So I feel like I was run over by a Mack truck, my eyes feel like I can't hold them open. I feel so anemic, even tho 3 weeks ago my labs were fine (except my Nuetrophil was high and my Lymphocytes was extremly low again)
I will be having those drawn here again soon to check the levels.

Coping with family:
Well that depends on the family member(s).
They can't see anything wrong with you.
So surely you must feel great! Yeah, right.
My husband and son & his gf are really good at understanding when I'm not feeling well. They try to make sure the dogs don't bark if I am napping. They will pick up my meds at the pharmacy for me, etc.
Do they read my website and get to understand what is Lupus or a MCTD? No. But I wished they did.

Myself in the past coping:
I went through stages.
I had anger in me, a lot of it when every single Dr would order XRays and nothing would show up why I hurt so bad, not even arthritis! (well now I do have that, Spondylithisis and most recently Osterarthritis)
But it was the blood work that along with my symptoms was my diaganosis.

Believe it or not I was happy when I was disgnosed!
I was so happy to have a name to what was going on with me. It took many years of them looking at Ortho problems, female sex organ problems to get an answer for me.
(I knew I wasn't crasy, I felt like they thought I was making up my symptoms!)

Now I get ticked off if I have many things to do and don't feel well enough to sit here and do them. I try to be a fighter.
I'm a fighter right now in other things in my life and like with Lupus, I will continue to be, I refuse to let anything or anybody control my life (marriage or lupus).

I'm sure there is more I could write, but how are you doing?
How long have you been dx?
What age did your symptoms start?

hang in there, we understand what you are going through!
Kathy

Comment by april venit on October 8, 2009 at 8:41am

HELLO EVERYBODY ,
JUST GETTING USED TO ALL OF THIS. ANY FEEDBACK ON HOW TO COPE.

Comment by Kathy on July 17, 2009 at 10:42am

Hi Kristin,
I'm so glad you feel welcomed honey. That's what the support is all about to be where we are understood, and others can relate to us.
Have a wonderful weekend!
Kathy

Comment by KRISTIN CHAFIN on July 16, 2009 at 7:10pm

Thank you,Kathy for settin this group up! I am still very, very new to all of this. I already feel very welcomed here. Hope to get a great community of support.

-Kristin