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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/4/2008 10:47 AM (GMT -7)   
Hi All:

As you all know I came home from the hospital last week. On Monday I saw my pulmonary doctor and she had them walk with me and keep track of my O2 levels. Well, after only walking 500 feet my O2 stats were down to 82%. So I know have oxygen here at home and tanks to take with me when I go out in public. I know I should be happy that they've finally done something about my shortness of breath, but I'm depressed that I've worsened to this point. It scares me that I'm going to continue to fall apart and die real soon.

I'm not sure how my hubby and daughter are handling this right now. Neither one of them really wants to talk about it. Bill moved out of our bedroom as the machine is to loud for him to sleep. I feel guilty that he's had to move to a different room.

Also, I saw my Internist on Tuesday. I'm to start to taper back on the steroids. They are hoping that I can cut back 1/2 of what I'm on in the next month. She said to stop cutting back if I have any issues with joint pain, worsening shortness of breath, etc. She's also going to request my Oncologist put another mediport in my chest. My last stay in the hospital it took 25 sticks before they got an IV in or any blood drawn. I'm black and blue and look like I've been beaten up.

Anyway, that's whats new with me. I hope you are all doing well and had a Happy Thanksgiving. I need to try to get my Christmas stuff done. I hope you all have a happy holiday. I love you all and I thank you for being here for me.

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/4/2008 11:21 AM (GMT -7)   
I am so sorry Barb, I know the oxygen helps but it is also something that hurts emotionally. I too am cutting back on prednisone. I was on 20mg and am down to 15. We hope I will be at 10mg by the end of the month.
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


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 12/4/2008 11:23 AM (GMT -7)   
Hi Barb. I'm really sorry you have to be on O2. I hate walking around with my cane or walker. I can't even imagine how you must feel about having O2 all the time. I must say though that an oxygen saturation of 82% after walking a few yards is pretty pitiful. I'll pray that you will stay healthy through the holidays and you're able to get some pleasure! Love, Butterflake 

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/5/2008 12:24 PM (GMT -7)   
Oh, dear. I'm so sorry to hear this. I can't begin to imagine how much of a blow that must be - do remember, though, that people go on for years on oxygen. And people come off of oxygen. I know most of us think of the worst thing first, and come more slowly to the hopeful parts of things.

I hope more air will help your appetite and your overall ability to heal - it's possible you'll feel better overall when you aren't having to struggle so much to breathe.

I will talk with you soon - (((Barb)))

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/5/2008 5:54 PM (GMT -7)   
Barbara,
I know you've been through so much. I agree with Lynnwood. I think you will feel so much better with the O2. I had to have it this summer, my sats dropped to 84% on exertion and it was amazing the difference it made! Please know that I am praying for you! Love ya, Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/5/2008 6:52 PM (GMT -7)   
Hi Barb,
 
I'm glad you're home.  I sure do hope that things start to improve for you. Fingers crossed that you can taper down on the prednisone.
 
lots of love
Ginny
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/5/2008 7:06 PM (GMT -7)   
(((((((( Barbara ))))))))) Thanks for the update sis. I'm sorry you need the oxygen. . . but I'm so glad you have it. Yes, that would be hard having hubby move to another room. I actually do that when my dh is snoring or when I get too hot. I just move to the guest room. I think it hurts his feelings sometimes, but I do SO much better when I sleep well.

One way to handle this with your dh is to thank him for feeling comfortable enough to do what he needs to do to take care of himself. That should actually make us feel better . . . when they aren't hiding issues. But still would hurt initially. I hope you improve with the help of oxygen.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 12/5/2008 7:17 PM (GMT -7)   
(((((( Barb ))))) I'm glad you are home, you and your family continue to be in my thoughts and prayers. Love ya!
Stacie
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)


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted Yesterday 10:45 AM (GMT -7)   
Barbara-
You dont know me as I only post spurratically, however, I want to tell you that you are an inspiration to me - and I imagine to many others. Your courage and compassion show through in all of your posts as well as your love for your family... I hope that the oxygen helps make you a bit more comfortable (though I am sure it is a hassle) and that you get some well-deserved rest.


Wishing you the best
Laura

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted Yesterday 10:50 AM (GMT -7)   
Hi Barb,
 
Laura is right.  You are an inspiration to all of us.  I hope you have a good Sunday and that you're resting well.
 
Love
Ginny
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


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted Yesterday 12:00 PM (GMT -7)   

Hi Barb,

We all love you too and I think you give more to us with your courage, kindness, and love than we give to you. I hope the oxygen has you feeling better and the days ahead are brighter for you.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con, lovastatin, allorpurinol

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