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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/9/2013 12:43 AM (GMT -6)   
Okay need to vent a bit. Yesterday, 6/8/13 was my 28th wedding anniversary. I haven't been doing to well as of late. Lots and lots of pain in my feet. Lastest Dr who looked at me said severe Achilles tendonitis in left foot, mild case in right.

I can barely walk, they prescribed a boot and heel cups. Picked up both, can't wear the boot. It's throwing my back and hips out of alignment and causing massive pain. Mind you those areas hurt 24/7 already. Massive swelling in joints, Rheumy said to stop decreasing steroids but didn't agree to an increase. I KNOW I need more, don't see him again until August.

Back to yesterday, hubby got a car part for the car he's restoring for his present. I don't have much I wanted and either what I wanted he couldn't grant, my health back, no pain, you get the picture. Or with his furlough coming up I wouldn't agree to spending the money. So we agreed that he would wait on me hand and foot today. That we would get his oil changed in his new car, then take me and get a new night gown, let me rest and go to dinner.

Well I got my favorite sugar coated lemon filled donut at 10 this morning. We left and went to dealer and got oil changed. He asked me to look at cars on the lot, loads of walking nono nono nono when it hurts so badly. I did it though cause I wanted to please him. Left and went to get my gift, well parking lot is packed full he can't find a handicap spot. Won't park this car anywhere near others unless it's a handicapped spot. Needless to say we didn't go into store, went home instead. Hubby's grumpy by now.

Get home, hubby goes and takes a nap. I feed the cat and listen for hubby's cloths to finish drying. Get hubby up and the 3 of us go to dinner. Very noticeable hubby is tired and very grumpy. Daughter keeps asking why is he so upset. Dinner is so so considering what it cost. Home by 9:15 and hubby says night and in bed at 9:30.

Daughter leaves for summer job in NYC today. When she came home from college she dumped all her stuff in the formal livingroom. Told her it needed to be put up before she left. Guess what she's doing as I type, her room is so messy she has to fix it before moving other stuff in there. Why do they wait till the last minute? She will be tired and grumpy when she arrives for her job tonight for the ice breaker session shakehead

Feeling like neither one wants to discuss leukemia DX, but they are frustrated to have to deal with it. NOTHING has been said to me, not I'm sorry , how do you feel about it, hubby hasn't told anyone in his family about it. Daughter asked me, do I want her to live her life, or stay home and care for me until I die? Guess I feel like a HUGE burden now, thinking of packing my bags and just disappearing. I've spent the last 28 years following this man around the world and because I hurt today or that he wasn't patient enough I was denied a simple request for my anniversary. Am I being unreasonable? Is my pain frying my brain and I'm expecting to much? I just don't know what to do anymore. As I sicken I'll have more and more bad days than good.

Okay, guess I've vented enough for now, thanks for listening. Need to attempt to sleep as I'll be in charge of making sure daughter is up on time to catch her bus to NYC. I hope each and everyone of you are having a better weekend.


Jasmine Grace
Veteran Member

Date Joined Jun 2013
Total Posts : 815
   Posted 6/9/2013 9:30 AM (GMT -6)   
Oh Barbara, I'm so sorry that you're going through all of this. If there's one thing I've learned from my chronic illnesses, it's that healthy people just don't get it. They have no idea how we feel, what we go through every day. (While I don't have a life-threatening illness, I did go through a time when my symptoms were so vast and confusing - and undiagnosed - that I was concerned that I did have one.)

Sometimes when people don't understand, they have no idea what to say. And they can spend so long agonising over what the "right" thing to say would be, that they just end up not saying anything on the subject for a really long time. And maybe your husband is still coming to grips with the reality of it all... Sometimes when we hear bad news, we don't discuss it for fear that it will make it seem too real somehow. Maybe he is scared of losing you and doesn't want to face this possibility.

As far as your daughter goes... well, I'm a teenager too and I don't think I would EVER put my own life experiences for the next few months ahead of staying at home with my mother in such a time of need. It wouldn't even be a question. I'd take a leave of absence from uni. That said, I have been through a lot more than your average teenager has... maybe I just don't see the world the way most teens do.

If you are still considering leaving, ask yourself this: Do I have a better support network (friends, extended family, etc.) that I can plant myself in? If not, then you may want to reconsider, give your husband some time to adjust and wait a while to see if things turn around or not.
Age: 18

Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, allergies, dermatitis, low immunity, food intolerances, panic attacks , tinnitus, restless legs syndrome... and I won't list the rest

Goals: to be an occupational therapist who specialises in treating people with blindness and people with fibromyalgia
To travel around the world

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 6/9/2013 12:01 PM (GMT -6)   
Hey Barbara,
      We all have moments like that.  They frustrate us and disappoint us.  I know that for me, I tend to want to run away and hide.  Realistically, I know that I really do not want to physically get away.....I just need to be alone both emotionally and spiritually.  Jasmine Grace-you have wise words for someone so young.  When I read your response, I felt your insight and maturity come through.   Your thoughts helped me as well.
      Barbara-I am sending you a warm, loving ((((((((((((((((((((((((HUG)))))))))))))))))))))))) from the West Coast, which by the way, is beautiful today.  Lovely blue skies and sun.  An antidote to the foggy mornings we usually have.
Love You!

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 6/9/2013 6:52 PM (GMT -6)   

Been thinking and praying for you everyday. Know I am always an email or phone call away! Big gentle hugs!

Lupus Moderater

dialysis from lupus nephritis

Regular Member

Date Joined Jun 2013
Total Posts : 30
   Posted 6/9/2013 9:42 PM (GMT -6)   
Sorry to hear that you are having a tough day.  Praying that you begin to feel better real soon.  I pray that your family will begin to support you more and help with the healing process.  I know that it is hard for our family members when they can't take our pain away (whether it is physical or emotional).   Unfortunately in marriage our husbands aren't always the most supportive when we really need them to be.  Hang in there and know that you are not alone. 
History: 2002 positive for antiphospholipid antibody, Ectopic pregnancy. 2005 Placental Abruption with son (lost him), after birth positive for Anticardiolipin antibody. No longer positive. 2007 gave birth to beautiful daughter. 2012 miscarriage. 2013: ANA +, RNP +

Symptoms: heart palpitations, lightheaded, fatigue, body aches, headaches

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2013 11:34 PM (GMT -6)   
Barbara, I wish I could come up there and take care of you.
I hope that they realize that they are being very shallow about you.

Hang in there, Woman. You are not a burden. If anything they are being burdens to you. If you were my mother I'd be there every moment waiting on you hand and foot so much you'd be saying "Get out of here, Woman! You're always underfoot!" ;)
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/10/2013 12:33 AM (GMT -6)   
Hi Joy, Chawnie, Amy, Laura, and Jasmine:

Thanks for your kind words and support. I couldn't help but vent, I'm feeling SO alone. With both my parents being gone and my two much older siblings acting like I don't exist. Then add hubby and daughters behaviors I feel abandoned in this world now.

Maybe, I just have to high of expectations I don't know. My day wasn't any better than my day on Saturday. I couldn't sleep last night, or tonight for that matter. It's 12:45 am Monday morning as I'm typing now. I was up at 8:30 and got my girl up we left the house at 9:30.

She was VERY tired and most unpleasant to deal with. She was so bad her Dad wouldn't go with us. I came home with a very heavy heart, guess it feels broken. She hardly spoke to me and she hasn't been to nice when she does speak to me. I know that some of her spoiled ways are my fault, cause I did spoil her, BUT, I also tried my very best to teach her to ALWAYS treat people well. As far as I know she's always NICE to everyone but hubby and I. I think she's nicer to him than me most of the time.

I've devoted my life to her. She had some delays as a small child. Some of it will always be with her, it's just part of who she is. I know this about her, and she gets upset with me because she feels I can't accept her the way she is. WHICH THAT'S NOT TRUE! I totally devoted myself to her and her needs 24/7 from age 2 1/2 until she was 12.

I think a big part of the problem is she's MAD at me, my Dr's, my illness, and even the world I think. I'm blamed for it all. She came home May 8th and only spent 2 times shopping with me, that was cause she wanted stuff. Only once sat and ate dinner with us at home. She watched 1 TV show with me. Otherwise, she spent her time in her room with the door shut.

She suffers from insomina and most days didn't get out of bed till 2 pm. She would eat and go into her room. She doesn't want to share anything with me or her Dad. She speaks to me like I'm dog crap, hubby tells me to tell her to "F" off and ignore her. I just can't do that, but I know I need to do it, my heart is being broken. I'd die for her, and she just doesn't appreciate that. Like I said maybe I'm expecting to much. Being told that I can't talk to you or text you everyday cause I'm going to be really busy, hurts so badly.

Why can't she realize that biting the hands that are feeding her, and helping pay for college that will cost $160,000 for 4 years, that's tuition only. This doesn't give her Dad warm fuzzy feelings. That treating me and him like she has doesn't make us want to run out and offer up the $40,000 she'll need come August. Can anyone tell me why kids act this way? Is it going to get better? Is all this because I'm sick, and she's mad? I know that regrets are hard to live with. Once my Mom passed away, there were a lot of things I wished we'd straightened out.

I don't want my daughter to feel bad about how she's treated me as of late after I die. I only want her to be healthy, happy, and successful in life. Should I step back and give her the space she seems to want? I've thought about it today and my daughter has NEVER EVER told me that she loves me, without me saying it first to her. Maybe it's because I took her when I discovered she wasn't talking and all the DX'ing started, maybe she's mad cause I got her help, what ya think? Should I not call or text her while she's gone to NYC?

I'm just so sad, any suggestions would be welcomed. I'm a worrier of a Mom, so not knowing how she is for 8 weeks will be hard on me but maybe it's the thing I need to do. I truly know a lot of this is part of her personality trait, but I also know it all can't be blamed on her special needs.

Please pray for me or send loads of positive thoughts and energy. I'm in constant pain at extreme levels, I feel sicker and sicker daily, my depression is worsening (I am seeing someone weekly though), I am so LONELY, and I'm AFRAID I'm dying and no one here at home seems to care.

Thanks for your support, I'm sorry to vent always and be such a Debbie Downer, just don't know where to turn to.


P.S. Jasmine thank you for your wise words you are very mature for your age. I want to welcome you to HW, also I'm very sorry that you have to cope daily with so much pain.

Jasmine Grace
Veteran Member

Date Joined Jun 2013
Total Posts : 815
   Posted 6/10/2013 1:28 AM (GMT -6)   
Hi Barbara and Oreo,
Unfortunately that wisdom has come with terrible experiences where people never seemed to care for me or understand what I was going through for a very long time. Also from reading grown-up books since I was 11, and from my general observations of what I have seen in the lives of family and friends.

Thanks for making me feel welcome.

My mother has chronic fatigue syndrome and depression. My younger brother and I grew up with her having these conditions since I was 2 and my brother was 9 months old. He was spoilt; I was the responsible elder sister. He seemed to have responded to the situation in a similar way to your daughter (staying up all night, not talking to mum, angry and spiteful, demanding his own way, etc.): he was angry at mum for not always being there and for "moping around"; and he was angry at the world for not understanding who he is (he has some condition, I'm sure - he's definitely not normal). I know he feels horrible and upset about how mum keeps bringing this "abnormal-ness" up (I'm sure you don't do this, but maybe your daughter assumes that you are always thinking about it). My brother no longer lives at home, and after about 2 months of moving out and not talking to mum, his perspective seems to have changed for the better. He is a lot more respectful and kind to our mother now. Perhaps this will help your daughter too - let her stand back from the situation and examine it without actually being IN it for a while; she may experience a change of heart/mind like my brother has.

That said, when my older brother moved out of home (when I was 7 and he was 15) my mother didn't contact him for years. Even now he's still very upset about it (he's 26).

So, maybe give her a while to breathe - like a fortnight - then send her a text message. If this is met with no answer or a not-very-encouraging reply, just text her again a fortnight later, so she knows that you're trying not to be too pushy but you haven't forgotten her, either. If she ever outright tells you to back off - then maybe leave it for a month or something, unless you know there's not much time left to waste. If she replies nicely, maybe you could text her every week or even ask to call her sometimes. But I suggest don't make any phone calls unless she agrees to it by text message first - if she can't be bothered with a text message, then she's certainly not ready for a phone call yet.

If she continues to behave like this, I suggest writing her a letter showing your love, forgiveness and support. Then make sure your husband knows to give it to her should anything happen. (It's really sad to talk about this!) This way you can know you're covered no matter what happens.

If she is mad because you got her help, then just know that she obviously doesn't realise that this was good for her. Even if she doesn't appreciate it, you did the right thing.

Hope this helps and that I'm not giving bad advice...

PS Trying to send you some positive energy. Praying for you too
Age: 18

Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, allergies, dermatitis, low immunity, food intolerances, panic attacks , tinnitus, restless legs syndrome... and I won't list the rest

Goals: to be an occupational therapist who specialises in treating people with blindness and people with fibromyalgia
To travel around the world

Veteran Member

Date Joined Jan 2013
Total Posts : 1038
   Posted 6/10/2013 3:21 AM (GMT -6)   
I don't know exactly how old your daughter is but my mom and I have had some growing pains over the years. I know I have not always acted in a way that I am proud of today. I am now 30 but my mom has had dementia since I was 17. Before that she was bipolar and had other medical problems my whole life. Also we lived with my grandparents who had medical problems until they passed away. Basically since I was 8 years old I have been taking care of someone.

So when I got about 17 or 18, I decided I had enough I was going to have some me time. I did not think about the life long consequences of this decision because when you are that age you think nothing bad will happen. A common saying is a teen thinks they are invincible. But I personally also think this applies to everything. Teens do not think in long term consequences. I know that your daughter may logically know of your dx but I would bet on some level she thinks this can't happen to me, my mom cannot pass away.

Because I was not paying attention to what was going on in my mom's health she decided without getting enough info to get electro shock therapy to treat her bipolar disorder. I think this directly lead to her getting early onset dementia. I had done some research and told her it was not a good idea to do it but I did not fight for my stance. To this day I feel like it is partially my fault that my mom has to suffer. I think dementia is one of the worst things that can happen to a person. I watched my grandfather deteriorate til her did not even know my mom.

I tell you all this to say that I can sympathize with what you are going through. She might have some anger towards you for both her problems and yours. I know that is not an easy thing to hear. Sometimes during that stage of life there needs to be someone to blame. Usually it ends up being the person it is safest to blame. What I mean by this is she knows you will always be there no matter what so it is safe to take these feelings out on you because you won't leave. Of course this is all on a subconscious level. Also it is not fair. But you also have that stress of wanting to carve your own path and prove that you can be your own person. So I would agree do not text her for a while. I know it will be terribly hard but it could lead to you being closer in the long run. I would bet if you give her the space she craves while she is in NYC then she will be more receptive with you.

I have never lived in a home without my mom. When I had to move because my husband got sick the condition was she came with me. I have tons of guilt over decisions I have made. I think the letter is a great idea. Or maybe a video if you have that capability.

Please do not take offense to anything I say. I of course do not know you or your daughter. I just felt so close to the situation. I apologize if I said anything inappropriate.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

Regular Member

Date Joined Aug 2012
Total Posts : 36
   Posted 6/10/2013 6:36 AM (GMT -6)   
Hi Barbara,firstly greetings and many cyber hugs from across the pond in the UK. I just want to try to give a male perspective to this as a husband father and previous carer to my lupus family!! Your situation is horrific and i really feel your pain and torment,i dont post often but read daily.Anyway some 16 years ago after years of misdiagnosis my now ex-wife was diagnosed with severe cerebral lupus spent months of work at various times nursing her/family 2 young kids then,back to relative health,anyway fast forward another 6 years and my son (aged11)was diagnosed with lupus nephritis grade 4,wife had severe flare at this point,hospitalised,day she was released son went in hospital day after to commence treatment cyclophosphamide methylpred etc etc,was unresponsive for months then gradually started getting better,meantime my daughter then aged 8 started showing symptoms rash,+ana,mouth ulcers,joints but to this day remains undiagnosed.Because my exwife was flaring a lot back then,i gave up work mainly to care for son was in hospital months and was many miles from home, i continued caring until he was 18 and went to uni,then returned to work as his health has been much improved and the ex is much better these days.Anyway when kids where young going out/holidays where difficult in planning,because of her health day to day,the kids built up resentment to this,no enjoyment friends going here ther everywhere and they stuck at home with a sick mum and a father on benefits no money to do stuff!! over time things obviously became worse with son,daughter still having symptoms but ok and i think i came to a stage where i couldnt cope with all the crap and constant worry and turned to drinking a lot more (returned to work 2.5 years ago) we (wife and me) argued a lot bout my drinking and eventually split,i sought treatment now live alone and am teetotal,but what im trying to say i think,is that resentment builds up over the years of not being able to do normal things as a family,i apologise if i have got things wrong about this,just trying to put a male/father/husband perspective on it.I really do wish you well and hope things improve for you.Just as a side note my son graduates from uni next month aged 21 and will hopefully get himself a good job etc my daughter starts uni in sept this years on a pediatric nursing course,with a view to specialise in rheumatology down the line!! I still fear she will be diagnosed with lupus at some stage in her life (to many bits and pieces to ignore) but she remains ok.Not good at this sort of stuff just trying to help.God bless you,and hope you improve and your family at least try to help a bit more Paul xx
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