Here I go again!!!!!

Hi Everyone:

I've not been around a lot the past two weeks, I've not been feeling to well. I have managed to read some posts and know that some of you aren't doing to well either. I know there are many new faces here too.

So to those of you who are having a tough time, you're in my thoughts and prayers and I certainly can relate to whats going on with you. To those of you who are new welcome to our forum, this is a great place and I'll try to respond soon to your posts.

Well I saw my interest today to review how I'm doing. My lupus is still flaring as is my RA and Fibro. My issues with my lupus lungs my doctors have decided are permanent and there won't be pulmonary rehab for me in February. From here on out I'll be on oxygen, I'm to use it more than I'm doing here at home. I'm to NEVER go out in public w/o it.

I've got ulcers in my mouth, I had blood in my urine, and I'm having pretty bad joint pain. Not to mention the chest pain that goes with the shortness of breath.

I've been battling issues with warts on my left hand. They are so big and NOTHING has worked to get rid of them. They cut them off when they get so large that it interferes with my ability to use my fingers. Apparently, I'm so immuno suppressed that my body doesn't recognize the wart virus and my body is unable to kill off the warts. So starting in February, they will begin to give me Interferon or a different chemo drug to try to kill the warts. In November they gave me a dose of chemo directly into the warts hoping that it would kill them. No such luck, and now I'm faced with taking some very heavy duty drugs.

My MDS (blood cancer) is worsening also. The medications I'm taking to treat my Lupus and RA are killing off my bone marrow. Since my blood cancer limits the amount of bone marrow I'm making I'm sliding down the slippery slope and I feel like heck. My anemia is worse and I'm going to probably need blood transfusions here in the near future, especially now that I'm loosing blood in my urine again.

The last time I was in the hospital it took like 28 sticks before they could get and IV in and trust me they did use ultra sound and still couldn't get a line in. So I'll be getting another mediport placed in my chest between now and February. I'll need the mediport for IV access to receive my Interferon and my oncologist apparently wants to give me a few doses of chemo to see if it will affect the MDS and the warts.

Needless to say I'm hating my life and wishing they'd stop trying to put band aids on my problems and lets just pull out the big guns and take the chance and do the bone marrow transplant. Of course, they say I stand only a 35% chance of living through the transplant and they are unwilling at this time to take the risk. As long as I can continue to rebound on my own it's safer to have me still be alive with my family and "getting by" as I do, rather than have me "expire" their words not mine.

I was hoping 2009 was gonna have some bright spots but so far it's looking bleak from where I sit. I know there are those of you who are way sicker than me and I shouldn't complain. Darn it though, isn't having Lupus, RA, and Fibro enough, why do I have to have "smoldering leukemia" on top of it all? I'm back to questioning the "Why me", I know I should let it go but........ Anyway, that's my update and I thank you for listening to me vent. If you feel up to sending positive energy my way or a few most appreciated prayers I'll gladly take them.

Love,
Barb

(((( Barb )))) I'm with Redrose on wrapping you up and pampering you for days! I am so sorry you are dealing with all this. I don't blame you for wondering why, I think it's perfectly natural for us to do that. Hang in there sis and please remember you and your family are in my thoughts and prayers.

Hi Barb,

 

With Redrose, Stacie and myself wrapping you in blankets, you sure won't be cold! Barb, I am so sorry you're dealing with all this flare up business.  I think I would also be saying, "Nothing to lose. Do the transplant."  The bandaid solution isn't working, and you're struggling.  Oh man..... I wish I had more to say Barb.  I'm just so frustrated for you.

 

I am saying prayers for you tonight and sending positive thoughts your way. 

 

Love and blessings,

Ginny

Barb,

I'm sending you all the positive energy I can muster and all the prayers I can your way. I have to tell you Barb, that I can't imagine anyone being any sicker than you, but I know you can do this Barb, no matter how tough things get for you. I've missed seeing you here and assumed that you weren't feeling well, but didn't know just how bad things are for you right now.

Keep your chin up girlfriend, and know that I'm thinking about you and praying for you. I'll be better about calling to check in with you.

Sending lots of love your way,

Pat

(((((((hugs)))))))) my dear friend. You vent all you want you more than deserve to. I have to say your truly the strongest woman i know. Here you are dealing with life threatning diseases and all the fusrtration and pain that goes with it all and you still give so much of your self. I should be ashamed of myself for leaning on you the way i have and your always there for me and all i'm dealing with is some chronic pain. I thank God your in my life Barb your truly a blessing in my life and i love you like a sister. I pray you get some releif from your pain and just know your very loved here.
Love
Kay

(((((((Barb))))))) I'm so sorry that things continue to decline for you with your health. I don't blame you for wanting to do the bone marrow transplant sooner than later. Don't ever feel bad about posting how you are doing. All of us care deeply about you and want to know how things are and we want to be able to be there for you when you need support. You are very sick and I can only imagine the emotional toll it takes on you, so know that we are here for you. Even though we can't physically be there, just imagine that we are surrounding you now with all of our warm blankets and love and hot tea and anything else that sounds good to you. Take care of yourself. Lots of love, hugs and prayers.

((Dear Sweet Barb)) Thanks for letting us know how you're doing. I really don't know anyone sicker than you are, but I hope that notion doesn't make you feel worse. I'm just saying you have more than enough reason to vent. I'm sorry you'll be on O2 permanently. I can't imagine how much it must suck. Those warts sound nasty. Since taking Cellcept I have two warts on my palms, but they a very small. Having a mediport is no easy task either, especially with your immune system. Medical terminology (expire) is a language all its' own. I used to have a very funny "dictionary"  of medical terms. I only remember my favorite which I hope will make you smile (not cry). OK, the definition of barium: what you do when CPR fails.   I'm doing pretty well right now, so I'm sending you lots of positive energy!! Love ya, Donna

I'm so sorry you're going through all this, Barb. It is so hard to understand, and I can't even begin to imagine it. My symptoms and disease are so very minor in comparison that it really puts things into perspective. You are in my prayers, Barb. *HUGS*