Here I go again!!!!!

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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/7/2009 7:15 PM (GMT -6)   
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.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 1/7/2009 8:09 PM (GMT -6)   
oh Barb, I wish there was a way I could wrap you in a warm blanket and pamper you for a few days. You really need it by the sounds of things. I am so sorry things are so bad again. I wish that I could do more than offer words but unfortunately that is all I can do even if I were near by that would be all I could do. I am barely coping here. I am not adjusting well to reduced prednisone but need to be off it. I am down to 7.5mg and really miss 20mg. I could have been of some use to you at 20mg.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/7/2009 8:26 PM (GMT -6)   
(((( 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.
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/7/2009 9:13 PM (GMT -6)   
So sorry to read of your latest news. I tried to call today thinking you saw the doctors on Monday...I will try to catch you tomorrow. (Thurs)

You know how I think....

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982


Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/7/2009 9:24 PM (GMT -6)   
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,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined Aug 2007
Total Posts : 101
   Posted 1/7/2009 10:13 PM (GMT -6)   
Hi Barbara,
I was wondering how you were doing. I remember how leukemia affected my Dad. I'll be sending prayers your way.
much love and light,

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 1/7/2009 10:54 PM (GMT -6)   

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,

SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 448
   Posted 1/7/2009 11:15 PM (GMT -6)   
Hi Barb,

Girl, if ever anyone had the right to whine a little and the need to vent, it's you! It seems that your plate is currently overflowing at the moment. I truly wish there was something I could due to make things better. I love these message boards, but at times when I read posts such as yours I just feel so helpless, because I want to run over and give you a hug, make you a cup of tea and do what ever I can to make things better; even if it's just to lend you a shoulder to lean on!

Don’t give up! Hold onto Hope! There are brighter days ahead!

Hang in there! You are in my thoughts and prayers!


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Apr 2004
Total Posts : 1203
   Posted 1/8/2009 7:13 AM (GMT -6)   
(((((((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.

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 1/8/2009 7:30 AM (GMT -6)   
Barb I wish there was something that we could do to make you feel better and to take away all of your health problems. You are a strong lady, an inspiration to many people. Keep your head high and know that many people are thinking of you and praying for you!!

diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/8/2009 10:07 AM (GMT -6)   
(((((((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.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 1/8/2009 10:40 AM (GMT -6)   
((((((Bless your heart)))))))) I am sorry to hear that things aren't quite well with you. You are going through a lot and yes, I know it is tough. When last year I was very ill and was in severe pain, I kept saying "why not take my life away?" I don't know how to answer why we have such illness, but a chaplain in hospital gave me a card while I was very ill. This becomes my prayers when I was sick "Lord! Put me under the care of your wing, so that I can sleep tonite!" I hope this can also be my prayer to you.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 1/8/2009 10:50 AM (GMT -6)   
((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. smilewinkgrin   I'm doing pretty well right now, so I'm sending you lots of positive energy!! Love ya, Donna

Systemic Lupus ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS 
 CellCept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin,
actonel, tylenol arthritis, neurontin, phenegren,
flexeril, multi vit, C, flaxseed oil, acupuncture    Welcome to lupus where the strange is ordinary and nothing is normal :Donna

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 562
   Posted 1/8/2009 6:12 PM (GMT -6)   


Kay said it all my friend.  I wish I lived closer to you so I could help out and be there when you need a hug.  It does seem unfair that you are having to endure all of these illnesses and side effects from the medications.  You have every right to cry or vent, and my ear is always available.  I know once you accept this next challenge, you will face it head on and come out the winner.  You are always giving everyone valueable advice on how to get well, and that my friend makes you an expert as there isn't much that you haven't been through.  

Your Friend Always,


Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 1/8/2009 7:58 PM (GMT -6)   
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*
~ Bee

God is the strength of my heart! - Psalm 73:26

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/9/2009 7:25 PM (GMT -6)   
Hi Redrose, Stacie, Lynn, Ginny, Cynthia, Pat, Melissa, Kay, Connie, Hippi, Omega, Donna, Julia, and Bee:

Thank you to each and everyone of you for your kind words, positive energy, and prayers. I have to admit I'm totally wiped out tonight. I guess all the news I received on Wednesday was more draining than I thought it was.

I've slept most of the day today and I'm still feeling over the edge. The antibiotics that the Dr. gave me seems to be helping my UTI. I'm still awaiting news from my oncologist to get my new mediaport to be implanted. I still do not have an exact date when I'll begin the interferon. I plan on just resting over the weekend and maybe getting caught up with posts here.

I hope you all have a pain free weekend. I also am praying, for those of you who are flaring, that your flare resolves itself quickly. I can't thank you all for being there for me, I don't know what I'd do w/o you all in my life.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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