need some advice in family situation

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nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 10/25/2009 10:44 PM (GMT -7)   
hi all, hope everyone is ok, I need some advice on my family. I live with my 28 yr old daughter ,son in law and 2 grandsons 2 & 8 I am the main financial support in the home I am sick off and on all of the time some days are ok and some are really bad , my daughter does not understand at all!!!! she says things like mom if you would get up and do something you would feel better , I have tried to explain that sometimes I just cant get up! I take cytoxan once a month and I am really sick for about 4 or 5 days after she makes me feel really bad cuz I am not up cleaning or helping her out in some way when I feel well I clean do dishes vacum ect..... I do this all in pain but we all have to tidy up I understand this.she refuses to aknowledge that I am not the person I used to be she has went to 1 drs appt with me in all the years I have been sick and she thinks that the drs made me so sick cuz they had me quit work and go on disability she says if you would have kept working you wouldnt have got so bad your to inactive well #1 I cant drive cuz stupid lupus gave me sezuires that took alot of my independance away I have gotten so fat from the tons of steroids I have taken over the years this illness has so many complications that come along all the time I guess that to some people you can look like a hypochondriac that is how she makes me feel I feel guilty for being sick. when my 8 yr old grandson was 2 I could pack him around and babysit and all such as that but I cant do that with my now new 2 yr old grandson I guess I feel like she resents me for that so now I show my love with financial support its all I can do .I have no freinds they all flew away after they saw me have a seizure or was in hosp to many times and of course I cant drive so they had to come to me I guess it got old . I just wish that someday my family would magicly wake up one day and understand I will keep on praying so sorry for the long whiney post I had to get it out somewhere.thanx so much.......nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/26/2009 4:45 AM (GMT -7)   
Oh nona43,i feel so sorry you feel the way you do,you say you live with your daughter so i asume it's her home you live in rather than the other way around! Either way they dont sound very understanding of your illness...does your daughter think you swallow all those meds for the fun of it? Think you deserve a little understanding lupus is miserable enough to live with and it can be very depressing at times and i too cant get up some mornings because i'm in so much pain and this illness is very complex,fluctuating and difficult to control...i'm 47yrs old and my mother runs around after me sometimes because i feel so ill..fortunately i can still drive or i would feel so isolater too as you do and it can get you very down depending on others. when i've been in a bad flare though i cant drive sometimes for months but once i'm over the flare i'm fine but i never go more than about 15miles in case i'm ill and need to get home...i dont drive any distance coz i never put myself in a position where i could get too tired and feel ill and if i want to go out for a day somewhere i need someone to take me. my mother is 74yrs and fitter than me and i'm very lucky to have her..I live alone so i just shut the world out and ignore the phone if i dont feel well enough to have a conversation coz when i'm bad i cant even cope with that! You have a lot more than me on your plat since my lupus is mild...I think your daughter needs to be a little less selfish and read a book on your illness then maybe she'll be a little more sympathetic..we dont choose this miserable existance but we try to make the most of it with a little help +understanding!
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.


flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/26/2009 5:04 AM (GMT -7)   
I felt so sad reading about how you're feeling i just wanted to give you a hug!! Maybe it's time for a heart to heart with your daughter and i really do hope you can reach a better understanding about eachothers circumstances...maybe your daughter is feeling exhausted with a lot on her plate and wanting to lean on you more than you are able because your ill and believe me she'll be worse off if she does'nt give you some space because the stress is really not good for lupus at all!!! Hope you can talk and work things out...then enjoy eachother and the children! She will need to understand though that the children can be a bit much for you at times....my friend visits me with her 2yr old and i've had enough after an hour and if she stayes for a longer time i need to rest afterwards in pease,i cant go at anyone elses pace but my own and if i push myself it has repacussions!!I have a few very good friends who always keep in touch and very good parents who care but even they dont understand completely...I was a workaholic years ago and i dont have children and i was forced to give up work becuse of my lupus and there were a few people who thought since i had time on my hands so tried to put on me but i just say no..people who really know you and care will understand...take care x
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 10/29/2009 6:34 AM (GMT -7)   
Hi! Nona and everyone,
Before I give you my "free" advice turn I want to let you know that what you are feeling is ok and justified, and I can relate to much of it. My youngest daughter is often hypercritical and unkind, my oldest got wiser with her age. They often said, 'but you don't look sick, if you'd get off the couch and get some exercise you'd feel better, or that I couldn't possibly be as sick as you are acting...." but I am. I read everybook on Lupus I could find, and asked both my daughters to read "The Lupus Book" and "The Spoon Theory" for me. I am considering disability soon, and am blessed that my husband is so supportive. You aren't going to get a "magic" cure, family is what family is. What you are entitiled to is a bit more understanding and tolerance, more BALANCE from your family. Is there someone, an impartial observer, you could talk to? A minister, or check with your dr, a family counselor you could just sit down with to help give you some distance from your hurt feelings, and the mutual feelings of resentment and disparity, and stress, that only make your illness worse. I started a journal, and for  years that kept my sanity. I would write whenever I got angry or upset, or even had an unusual good day. And often, when I wrote I "talked" to my daughter, and ranted and raved. I would be careful to start a new page each time, because several times I ripped out pages and flushed them down the toilet... but that too, was helpful. It helped me see what I really needed to talk to her about. And then I wrote a list of 10 things I wanted different. In priority order, and a why. Then I selected 3 things that I felt were most important. And I worked to fix those top few issues. How would you eat an elephant??? One bite at a time,
hugs, keep us posted, share(not vent or whine) with us when you need to.
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 10/29/2009 6:39 AM (GMT -7)   
ps. what i meant was that venting and whining are perfectly ok, tongue but that here with us who understand, it's sharing. Share whenever you need to,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/31/2009 7:08 PM (GMT -7)   
Hey Nona, sending you huge hugs and prayers. I'm sorry you are going through all of this. Sadly many people are in your possition. I have been staying with my bro and sil for about a year and ahalf. I'm moving into my own place next week that goes by income. I can't wait! I just spent 2 weeks into hospital and my dr. wants me to get a motorized wheel chair because my lungs can't support my heart when i get sick. My 50 year old SIL just pops up with "I don't want you to get a wheel chair then you won't do anything. So I figure it's ok if my heart blows up as long as I'm not in a wheel chair. Frankly she said it so fast the only thing I can get from it is She thinks it will be a hassle in her life some how. At least in your situation your kids are still at a basically selfish age. Well at least my 29 year old son is. I think some of us are blessed with care givers and some of us are not. Are you in a position to get your own place. I know you are the bread winner there but hey they are grown up and if they think that you are being worthless then let them have to take care of their own stufff. You know what? This is all crap. We got a bunch of minipulating little buggers that need to grow up. You are sick disabled and you don't need their crap. You certainly don't have to pay for their love. But if they can convince you of that they got it made. You are sick you're disabled they are going to put you in an early grave. Stand up to them. Tell them if they don't get it together you are gone. They need you much more then you need them.
you come here and rant any time you want to. We have all been there. I think I have about 30 trophy's so far. But it was a long summer. turn
hugs
carol

systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/1/2009 9:32 AM (GMT -7)   
Nona, your post made me sad. Since you're the main breadwinner, why is it that you don't have your own place The last think you should be doing, as sick as you are, is supporting ungrateful kids. Set some limits or they will take advantage of you forever. I hope things get better for you. Carol said it so well, didn't she. Her sil is afraid that if she gets a motorized wheel chair, her brother and sil will lose their cook.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/2/2009 6:55 AM (GMT -7)   
Nona, sending you a big gentle hug. You are in no position to be a babysitter or cleaning
lady. You are important and the emphasis should be on you, your health and well being.

Hoping that some positve changes happen in your home soon and you will be appreciated
for the wonderful caring woman you are. We Care!

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/2/2009 2:04 PM (GMT -7)   
I am so sorry your daughter is such a brat about things. Since you are the main income it would seem she should be grateful just to have you around. Since she isn't maybe it is time for you to be on your own? I know that would be hard but maybe she needs to know what life is like without mommy around. Also I would insist she read the spoon theory and the lupus book and go to your doctor appointment and have the doctor explain lupus to her.
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, Sj√∂gren'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, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/3/2009 6:20 PM (GMT -7)   
Nona--
Sorry your family and friends don't "get it". I had finally gotten through to my family and started going through this again because I went to church and some people there don't understand because I basically look okay. People are afraid sometimes, other times they are just selfish. They say misery loves company so maybe they want to get you back to work because they view their jobs as miserable. Who knows. But I seldom find its out of compassion. Sometimes you just have to kind of tell your older kids to just "get a life" and focus on their own problems. Living with your kids can be a blessing and a real problem. The only thing I can suggest to you is to tell them you just cannot do it, when you can't, and to have them read the spoon theory. Remember, no one has the right to "prescribe" a lifestyle to you, especially when they don't understand what you are going through physically. Like so many other replies say, I'd pull rank as Mom and explain how hurtful the comments are to you and how insensitive they are being to your illness. Basically, it sounds like mykids that can take advantage of my brain damage to order me around and then all the sudden I have to stand up and yell "Back Off!" Bottom line, she's being rude. As her mother and an elder she should respect your ability to know what is best for you. If she doesn't like the extra burden of a little extra cleaning at times, maybe you can split paying a housekeeper. I was doing dishes every night by age 5 so it doesn't hurt a child to learn to do these things, along with vaccuuming and cleaning the bathroom and I got money for it. Kids have to learn sometime and I thought it was fun. So maybe the grand kids can help some. And your babysitting and teaching services are worth alot. A whole house cleaning once a week is much cheaper than a week of child care with expert mothering. Just don't let her take advantage. And as for loneliness, I got back with church and go to the library when I can and communicate alot through the web. I know its hard, but I have learned that the void of loneliness can be filled by a small dog or cat, spirituality, hobbies, many things. And once you are not so lonely when you are alone, then people have a way of finding you, but you may not want them by then! You are not alone, we are here!
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


nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 11/7/2009 4:53 PM (GMT -7)   
Hi everyone sorry I have not got back with a thank you for all of your kind words but I have been pretty sick . I really appreciate the support it really helps alot, I have gotten alot of good advice thank you so much it makes me feel good knowing that a group of kind strangers care how I feel you dont know what it ment to me to see all the replies when I logged on today for the first time in a while it brought me to tears, I hope everyone is doing well and for those that are not you are in my thoughts and prayers thanks soooo much.......nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/8/2009 9:14 PM (GMT -7)   
Nona,
I hope you have read the spoons theory. I forgot who mentioned it to you earlier. Your daughter needs to read it and hopefully it will help her understand what you are dealing with. Maybe take her to the doctor on your next appt. and let him/her explain how sick you are.

I went through the Cytoxan infusions about 4 years ago. So I can relate to the after effects. Bless your heart. You don't need that kind of treatment from you family and friends.

You will be in my thoughts and prayers. Rest and let someone else wait on you. You may have to put your foot down. Keep us updated. Hope you feel better soon.

Babs
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