Sooooooooo frustrated

Evening all:

I hope you are all doing well and having some fun tonight. I'm currently sitting in my bed, listening to music munching on Wint O Green life savers and trying to figure out what I want to say. I've had a tough week to say the least. I had doctors appointments on Wednesday and they didn't go to well.

My internal med doc whom I love dearly will be staying on at the Navy hospital for another two years so that's huge relief to me. Unfortunately, I made her upset with me and I'll probably have to take cookies and a card to get back in her good graces. She took me by surprise on my pain medications and it kinda upset me, then she went on to tell me that they've done all they can do for me and this is as good as my life will be. Of course, I started to cry and blubber, I told her I wanted a stem cell transplant and her response was I think it's gonna kill you. I responded I didn't care that my quality of life is crap. Right after seeing her we both walked over to my Rheumys office and she was present through the appointment. Heck, she even talked with the rheumy prior to me talking to him.

He came into the room and said they exact thing, we've done all we can. He had planned on giving me Rituxan in February but has changed his mind. I started Arava this morning along with my methotrexate, plauqenil, and medrol. He said he'd contact the rheumy at NIH and see if I can quality for a research study or even possibly a stem cell transplant. He gave me a shot in my thumb and sent me on my way. Now I should have been happy with that, but I was so upset I just don't know why. I went to get my meds and I couldn't get them they said the doctor didn't put them in the system. So I went back to my internist office blubbering like a fool and said give her a message I'll just stop all my medications. Once I got home I emailed her and said the same thing, when she called me back I got a butt chewing and she said I backed her against a wall and that I was threatening suicide and did I need in the the mental ward. Well I don't need that; it's just darn hard to hear your doctors say we've tried all and this is as good as it's gonna be. I'm weary and sick of being so darn sick.

They don't want to give me anything that will affect my bone marrow because of the blood cancer I've got. I just don't know what to do, my labs are now into the normal range for the lupus and RA. My sed rate and CRP are still elevated but not through the roof. I just can't handle anymore I've got this stupid lupus/RA/Fibro/blood cancer, it's just to darn much for me. Plus my daughter is being a typical snotty teenager and she's constantly hurting my feelings every time I turn around. Hubby tries to help with my emotional stuff but it's useless he just doesn't get it all. Can I just yell and scream, what am I gonna do? My life is terrible the way it is. Honestly, I don't know how much longer I can fight this battle. I could use some prayers, positive thoughts, whatever you believe in please lift me up and pass to me some good energy so that I can continue to battle these stupid diseases. I feel like I take more than I give here but I lurk and read posts most days, I'm aware whats going on with you all. I know some of you are sicker than me and I wish I could do more for you. I try to offer up encouragement when I'm not down at the bottom of the pit that lives below me at all time.

Know that I'm praying for you all and I sure wish they'd come up with a cure and quickly. Have a good night and I'll keep you posted.

Love and hugs,
Barbara

Barb,

I agree with Patty. You need support and love wherever you can find it right now. Talking about it on here is necessary for you. Maybe some therapy would be good, too. I think talking about it would ease some of your stress, and we all know that stress can make things a whole lot worse for us (something I need to learn as well).

I'm really hoping and praying for some good days to come your way soon! Until then, keep your chin up.

((((Barb)))))

Just wanted to know that I am saying extra prayers that you are feeling better, soon. One thing I have noticed in this roller coaster ride we call life is how quickly things can go from hopeless to good - sometimes even great! So hang in there, one day at a time and vent everyday on this board!

Please know that I will be lifting you up to Jesus in prayers. He understands when nobody else does! I'm with Fran. Things can surely go from really bad to really good real quick! I'm living proof! Hang in there! God Bless ya! Judy

Barbara, you are so crazy to say you don't support us!! You may not post often, but your daily presence in chat helps us all in a more immediate one-on-one way.

You are so very often in my thoughts, and I am so grateful to this group and the support I've gotten from it over the years - I hope somehow our support for you can jump off of these pages and warm your heart.

Always,

((((Barb)))) Bless your heart. Like Lynnwood says, it's a comfort knowing you're here at HW. I don't know if you take psych meds, but from my personal experience when I start to cry and blubbler it's time for a med change. I also see a therapist now. She's my 3rd and she's a great help to me.  So you may want to consider therapy too. If you don't like shrink therapy, please know that I'm praying for you. I also now have positive energy to share and I'm sending lots to you along with a hot cup of tea. I love you Barb. Donna 

(((Barb))),
I'm glad to hear you will be seen at the NIH and I hope the appointment will be soon. I will be praying that once the doctors at NIH look at your records and see your condition, they can come up with some type of treatment plan your other doctors may over-looked.

I can hear the desperation in your posts sweetie.....((Gentle Hugs))). My heart goes out to you, my friend. It breaks my heart to know that you are suffering so much physically, mentally and emotionally.

There are a lot of prayers and positive thoughts coming your way. Like the others said, things can turn around. Hang in there and keep us updated.

I love you, my friend, Babs

Hi Barb,
I just wanted to check on you sweetie. You have been so good to update us on Carol when you are feeling so badly.

Know that you are always in my thoughts and prayers.

Love you, Babs

(((HUGS)))

Thinking of you!