Update

Hi All:

Just wanted to drop a quick note and vent. As most of you know I traveled to Atlanta to meet up with my fellow lupies. I had to admit the trip was probably more than I should have done. Ever since I've returned from GA I've felt pretty bad. I've talked to the Doctor and there's really nothing that we can do. I've taken every drug out there to treat lupus except for Arava and Gold. I'm not sure my Rheumy will even consider changing things at this time. As most of my labs are in the just barely above the normal range. My labs for my MDS are positive but their two different diseases and well......there's nothing to do but wait with the MDS.

I'm sleeping anywhere between 18-22 hrs a day. I fall asleep talking to my family, I'm just so fed up with things. I know my doctor offered for me to have a second opinion but I'm very worried because of my labs regarding my lupus are so good that they'd try to take away my dx of lupus. At least the Rheumy I do have, even tho he's a huge jerk, he believes I've got lupus or lupus type disease.

Anyway, sorry I don't respond to many of the posts, I'm just so totally wiped out. I barely know which way is up anymore. I hate my life, I'm done dealing with it now, I'm ready for something good to happen.

Hugs,
Barb

Barb. you must be psychic because I was just out here wondering how you were because I hadn't heard from you. If you have the energy, I think a second opinon would be good. I wish travel wasn't so hard on you. I would say Moffitt in Tampa and Mayo Jacksonville. You are sleeping alot. Are they sure you don't have an infection? the pain drugs mask alot of infection symptoms. When you get a second wind, maybe you can bug them about this. when I had that kidney infection for like a year, I got to the point I couldn't stay awake. Finally, when I couldn't walk to the toilet myself, the ER decided to give me the nasty "STD" dosing of "kill everything" antibiotics, and it helped.

I've been looking at what the government is spending the money they allocated for autoimmune disease on, what research they are doing. If you can't sleep, you might read that post, it will help.;) I'm sorry I missed you at Atlanta, I wanted so much to meet you but I was feeling sick and it's a good thing I didn't go because I wouldn't have wanted to get anyone sick.

I wish we could blink our eyes and have our problems solved, like Genie. All I can do is send lots of love and (((((hugs))))) and good things and prayers your way.

Hi Barb. It was so good to see you in ATL and I'm very glad you made the trip. Feeling like crap since you returned is truely awful. I can really relate to your frustration re sleeping 20 hours a day. I recently went thru that for a few weeks. There is no joy in that life what so ever. I hope and pray you regain some strength SOON! I'm sending you lots of positive energy too! Love, Butterflake

(((((Barb))))) thanks so much for the update. I'm so sorry that you continue to feel so sick and that the docs can't do much of anything for you. I don't blame you for not wanting to see another rheumy because of the diagnosis thing - we've seen it happen to too many people here. Just know there are lot of us here who love you and care about you and please don't worry about not posting - we know that you are just too sick right now. I'm sending lots of love and hugs and prayers your way.

Barb,

   I'm sorry the trip took so much out of you sweetie....(((Hugs))). I was afraid that would happen with you not sleeping much at all there and on the go. 

   I know when I talked to you the other day on the phone you were feeling pretty badly and so frustrated. My friend, you are always in my thoughts and prayers.

                                                                 Love you, Babs

I hadn't seen Barbara on in a few days and just called her. Her daughter said she went to the ER this afternoon. I didn't ask any additional questions, but if you would all send good thoughts her way.... Thanks,

Barb..
Thoughts and prayers are are comming your way. Wishing you well!! Debbie

Lynn,

   Tks for letting us know whats going on. Barb called Karen too and I just got off the phone with her. She said basically the same thing as you. I hope and pray Barb will be okay and they will keep a very close eye on her. I will be looking for an update. Tks again!

Barb sweetie, I know this has got to be vary scary for you right now....((((Gentle Hugs))).  Hang in there and know that alot of prayers and positive thoughts are coming your way!!

                                                                         Love, Babs

Lynnwood, thanks for all the updates. ((((Barb)))) I am praying you will be okay and that the docs will figure out what is going on with your heart. I'm upset for you about them not managing your pain well and all that you are having to go through. We are all thinking of you. I'm sending lots of prayers and love your way.

Thanks Lynnwood. (((((Barb))))) I'm so sorry you are going through this and I wish I could make it go away. I will pray for you and hope that you get a new head doc or he sees the light and does the right things for you and gets you well. Will also pray for strength for your family at this time. Miss you.
Marji

Barb: I wish they can give you an answer by tomorrow, you should not be this sick with no answers. You are in my thoughts and prayers. Debbie

From another thread, okie said... p.s. just got off the phone with Barb, that did her CT scan. Getting ready to take her up stairs. She had just showered and was out of breath. (i can relate) anyway she will have her cell phone on when she gets settled for those who want to call her.

Just talked to Barb...8:49 est.

   They did the Ct and she has no blood clot.....they said she does have inflammation around her lungs....still no reason for the abnormal EKG!! She said they will probably send her home tomorrow.....Grrrrr!!!

   She is very frustrated and I'm really worried about them sending her home without checking out her heart! She has an appt with the plumonary doc tomorrow and said she will ask her to look at the EKG then.

   Just wanted to give you all the latest update. Barb said to tell everyone hello and ty for the prayers.

                                                                                Babs