I feel ashamed!

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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 12/12/2008 12:54 PM (GMT -6)   
Hi All:

Sorry I've not been around to much. I'm struggling a lot with using my oxygen. It's ok to use it here in the house my family understands. However, when I go out in public I feel like people are staring at me and thinking "she's to young to be on oxygen" then I feel ashamed.

I saw my therapist yesterday and he asked if this is a sign that I'm worsening and I said yes, and he replied "and you just want to be dead, correct". I responded yes I do, I don't want to get sicker, I'm afraid that I'll become an even bigger burden to Bill and Nikita. My emotions are all over the place of course taking 35mg of pred isn't helping any I suppose. My GI doctor commented to me "Wow" you're only 43 and on oxygen", I'm sure he didn't mean it in a bad way but it sure hurt. I just don't know what to do. Any suggestions on boosting my mood when I need to go out with oxygen on? Like tonight is the school play for Nikita all her friends and her friends parents will be there and I'm dreading being seen with the 02 on. Maybe I'll go w/o it, I don't want to embarrass Nikita either.

Anyway, that's why I've not been around to much. I'm sorry and I'll try to be here more. Thanks for listening.

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

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 12/12/2008 1:15 PM (GMT -6)   
(((Barb))) You forgot the next sentence, "She's too young to be on oxygen. I feel so badly for her." Yep, people stare when I'm out with my walker. I used to think that people thought, "If she'd lose weight she wouldn't need that walker" but all too often I saw the compasion in their eyes. Now I know that even though they can't help staring, most of them are just sympathetic. I hope this helps Barb. You sure do deserve to have a happy holiday. I'm praying and sending positive energy. Love, Donna 

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

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 12/12/2008 3:36 PM (GMT -6)   
Don't go without your oxygen. Your daughter wants her mother around not being rushed to the hospital in an ambulance which would be mortifying. I wish they would do something more for you. I know you feel down, maybe it would help if you ask your family if they honestly feel you are a burden. I am sure they don't. Can you get a nurse to come in and help once in a while or someone to clean? I dunno if you already have something like that but it is a thought. I just really wish I could say something that would make you feel better. I do know losing you would be a huge loss for your family and they would resent every day they didn't have with you. Your daughter will want you there for her wedding and to watch her children grow up.
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 Feb 2003
Total Posts : 5514
   Posted 12/12/2008 3:44 PM (GMT -6)   
Barb, I don't think you are an embarrassment to your family.  They love you.  Like Redrose said, you must use your oxygen.  Please don't go without it :)  I know that Bill and Nikita would be mortified if they knew how you were feeling.  Those two have been rocks of support for you.  There's no way you are an embarrassment.  No way!
Lots of people have health issues and lots of them include oxygen machines.  Is it possible that you might be taking too much notice in what others are thinking or seeing?  I know for me, if I'm feeling "prednisone bloated" with that moon face, I assume people are staring at me and wondering, "Why does she look so weird?"  But they really aren't staring at me.  No one is even paying any attention.  It's just me being hypersensitive!
I hope you go to Nikita's play and fully enjoy yourself.  Just go and love every minute watching your darling daughter!  Be good to you.
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

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 12/12/2008 4:28 PM (GMT -6)   
Speaking of prednisone, maybe the high dosage you are on now is contributing to your feeling of embarrassment?

I know my mind plays plenty of tricks on me when I'm under the influence of certain drugs.

My vote, go, raise your head high, and be happy that Nikita has a caring, loving parent willing to be there for her. Even if she acts upset now, she (and you) will be happy in the future to remember her fun night onstage!

We love you,

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

dave z
Regular Member

Date Joined Dec 2004
Total Posts : 164
   Posted 12/12/2008 4:49 PM (GMT -6)   
(((((BARB)))))  Over the years you and I have had many chats regarding yourself, Nikita and Bill.  I fully understand that there are many things that you are unable to do for them.  However I can think of only one reason for you to miss Nikitas s Christmass show tonight and that would be if s you are so sick that you are physically unable to do so.  I can gurantee you 2 things which will happen when you make it to the play.  1. Nikita will greatly appreciate your presence and support.  2. Although you may struggle to get through this oxygen and all you will be proud of both Nikita and yourself for haveing been there.  Besides who cares what others think.  So go love.  Dave. 

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 448
   Posted 12/12/2008 8:27 PM (GMT -6)   
Hi Barb,

Perhaps I can lend some encouraging words. I lost my mother in 2001, she died of lung disease. For many, many years she denied that she had the disease and did not need medicine or oxygen, she would say the doctor was lying, she was in denial. Finally the time came when she could no longer deny the fact and she had to go on oxygen and meds, it was the best things she ever did, it gave her a life again.

If Mom had not been in denial for so long and started the oxygen and meds earlier perhaps her disease wouldn't have progressed so quickly and we might have had a few more years. I can tell you that I would give anything to have my mother back, to have just one more day with her, to tell her all the things I never got to say to her. I loved my mother, I would do anything I needed to do for her, I'm sure your family feels the same about you. The word burden never came to my mind, I just did whatever Mom needed me to do, just as she had done for me throughout the years.

I'm sure you are a very strong person, you have to be to live with this disease! If you do it for no other reason Barb, put that oxygen on everyday for your daughter! Each time you do it will extend the time you have with her and that's what truly matters isn't it? Don't worry about what others think, just think of those that matter most to you.

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

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 12/12/2008 9:14 PM (GMT -6)   
I am guessing that as I type this Nikita's play is going on. I hope you are there, enjoying it fully, and that you'll have a lovely time laughing and chatting about it later. Sending lots of positive energy your way. (((Barb&Nikita)))

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 12/13/2008 10:18 AM (GMT -6)   
((((((Barb)))))) I am so sorry you are going through all of this and that you feel self conscious about having your oxygen out in public. One thing I sometimes do when I feel embarrassed or self consciou about something is to think about what I would think if I saw someone else in my shoes. What would you think if you saw a woman out in public who was in her 40's having to use oxygen? My guess is that you would feel compassion for her and that you would not be judgemental about it and that is how most people would feel. I don't know if this helps much because I can only imagine how hard it must be.

You are always in my prayers, Barb. I hope the play went well. Love and hugs to you.
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 Dec 2005
Total Posts : 1950
   Posted 12/13/2008 11:54 AM (GMT -6)   
Hi Barb--
Its just lousy how people can be. If you had a broken leg you got doing something incredibly stupid, like diving off a roof on a dirt bike, then people would be so sympathetic and smile. But if you are young and sick, people get scared and condemn what they fear, treating the sick person like they deserve it. Even children. And the more scared they are, the more they fear and the worse they are. Actually, it kind of tells you who is naughty and who is nice, for those so afraid of our illness and make all kinds of assumptions are those who perhaps feel they do deserve to be sick, because of risky or simply rotten behavior.

Its a good hearted, kind person who is troubled and unprepared for this kind of treatment. I got a lot of overt crap when I was being treated for Hepatitis C--especially from the medical community, who should know better. I was a pariah, and made to feel horrible, denied pain meds because everyone with Hep C is a junkie, and humiliated alot. Some medical professionals did not want to take my blood or examine me.

Here in rural ga you have the added element of "if you went to the right church and got right with God, he would heal you" or "you wouldn't have gotten sick". Yet everytime I set foot in these churches just to visit I get sicker with something new.

Its easy to criticize another when you don't go to a doctor and have no clue whats going on, like the people here. Most of them are probably sick too, they don't want to know.

Barb, you don't deserve this crap, this illness and this treatment by others, no one does. I'm sure Nikita and Bill are grateful beyond belief for every day they have with you. You have done absolutely everything you can to be there for your family in the midst of unbelievably massive obstacles. You have and continue to fight bravely. I don't know that its possible for any of us to truly fully accept our illness all the time, and be perfect to others while we are struggling just to get along. I remember that movie where it said "Sometime being a b**** is all we have left." I thinkit was Delores Claiborne. But its true sometimes, and if people provoke me when I'm ill, they are likely to get a dose of it at them and, secretly, its probably this punishment they crave.

Know I'm always praying for you and hoping that phone will ring soon and life wll get ALOT better for you. Love to you always, and if I was there I'd give 'em what fer.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 12/13/2008 12:18 PM (GMT -6)   
((Barb))) I just wanted to offer my support. I can truly say I know exactly how you feel. I've learned that the people who count accept me and love me just like I am! It took me forever to go to Wal-mart and get in a wheel chair to do my shopping. Now, I refuse to let RUDE, ignorant people rob me of my independance and freedom to do the little things that I can still do. I'm going to focus on squeezing every ounce of joy I can out of this crazy life i'm living! Love ya, Judy

Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 12/13/2008 2:36 PM (GMT -6)   
Hey chuck, being ashamed of being sick!!! Well, I DO understand that, I really do.
This is a feeling brought on about 'difference' and difference is not viewed well in society. That is a result of ignorance, so as an informative exercise, people SHOULD see sick people and sick people should receive equal love, care and do the things so called 'well' people do without feeling the shame you and so many others do.
Others have mentioned about their walkers etc.
Well, when I got my walker first at around 50 and not a grey hair in my head I leant over a wall and cried in 3 degrees below zero and in Ireland we are not used to that!
Yes, I notice out on my walker that all the friends who used to say 'hi there' are turning to do very necessary 'window shopping' or crossing the road.
I even go out without my front tooth because I cannot tolerate the denture.
Tis crazy world at pres.
Babs, do EVERYTHING you want to do and hold your head up, as others have told you.
xx and thinking of you.
I have a wee button badge which reads "I am in control" whether I am or not, it brings a laugh for others!
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, Chronic Muscle Myopaythy 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 12/13/2008 7:24 PM (GMT -6)   
Hi Everyone:

Thanks for you kind words and support I know I can always count on you all. Well I went to the play w/o my 02 but Bill pulled up front and I managed to walk into the theater and sit down right away. Have to say I enjoyed the play but it was and adult play and when certain sexual content was mentioned hubby was most unhappy. Also, having the kids curse I thought was improper for high school kids in grades 9-12. Thankfully, Nikita was only in the chorus and didn't have a lead part where she had to do either of those things.

I did go out today with my 02. I needed a haircut desperately and I had to go to the mall for it. Bill and Nikita were having lunch having a "talk". Things are the greatest between me and my daughter right now. She's complaining about me and I her. I hope this is just typical teenage things going on. I'm at a point between my health and the "issues" I'm having here at home, I feel so ready to just pack my bags and disappear for a couple of months. For you Mom's out there that has raised your teenagers, please tell me this gets better.

Anyhow, I'm not home under a warm blanket. I've had a fight with my hubby and he's pouting in the living room and I'm pouting in my nest. I know I'm seriously affected by the higher dose of pred. I just can't seem to help myself. Maybe going away would be a good thing. I've taken my pain meds and nightly meds and I'm gonna listen to some relaxing music and try to relax.

Thanks for being my friend. I love you all dearly.

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

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