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Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 9/30/2007 9:57 PM (GMT -7)   
For years I've lived with symptoms of Lupus, arthritis and fibromyalgia. There isn't a day that goes by that something doesn't hurt. My half sister who is 13 years older than me was diagnosed with Lupus in the 1970's. She's been very fortunate that she hasn't had organ involvement and she has never gone on pred or anything other than an anti-inflammatory. It has taken me years to get a diagnosis, but I knew I had lupus. Some of my doctors agreed, some thought it was all in my head, and yes I even had one that had the nerve to tell me it was because I was elderly. But I knew. (You ladies understand, most of you hearing my condensed version know exactly what I went through because you've gone through the same thing trying to get a diagnosis.)



Family members try to understand but they don't. They tell you that you need to take better care of yourself and not do too much, but then when you can't keep your house as clean as they expect you to, or you can't make it to that family picnic all of a sudden they don't understand. And what about the famous you need to exercise more? More? I'm lucky if I can get out of bed and dress myself in the morning.



We get up in the morning and look around the house and think we need to get all this stuff done but how are we going to find the energy to do it all? What about that laundry piling up faster than leaves falling off the trees? Then there is grocery shopping, putting it all away, then finding the energy to cook it and even clean it up. We're lucky to have an appetite after taking enough pills to make a rattle toy for a baby. Making the bed is a chore, when all we want to do is crawl up in it and sleep. Just pull the covers up over our head and block it all of. I sit down to relax and watch tv and end up falling asleep and waking up three hours later.



I just want to feel decent enough where I have the energy to clean my house, do my laundry, and occasionally go out shopping for an afternoon without paying the price afterwards. Flares can last weeks or even months. Is this what our life has come to? I didn't even feel good enough to go to church this morning and the only thing I really accomplished today was sleeping on the couch.



Thursday I go see my rheumy to discuss the blood tests he took 3 weeks ago. I realize worrying doesn't do one bit of good but I'm depressed enough right now and to think I'm going back in to find out if I have organ involvement or I'm not improving out of this flare he'd like and he's going to add another one or two meds to the list to take. Don't you feel guilty all the meds that you have to buy? All of that family income going towards you ... the person who can't seem to do her job around the house, you the person who can't work because you feel so bad all the time. My health insurance is $630.00 a month, plus all the drugs that I have to pay for. Plus the office visits and blood tests I have to pay for because my insurance doesn't pay for it. Nothing like making you feel like you are worthless.



I have a wonderful husband who is my soulmate and no matter what is always there for me. But he has enough on his shoulders, he's running his construction business and gone back to school full time. He doesn't have enough time in the day to do his job, school and what I should be doing around here. The one thing I don't have is my family. My sister and nieces just aren't there anymore. My sister hasn't called me since the day I told her I had lupus and my nieces won't answer my phone calls or emails. They all live out of state, so it's not like I can go knock on their door and find out what it is I did.



I don't know what to do, all I want to do is pull the shades down, shut off the phone and cry. I'm afraid that I'm in a serious flare, I've never felt like this before. Please tell me how I am suppose to pull myself out of this hole I'm in.

Post Edited By Moderator (Lynnwood) : 10/3/2007 6:27:00 PM (GMT-6)


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 10/1/2007 4:33 AM (GMT -7)   
Hi Gidget. I'm sorry you have to go through all of this. I'm very lucky that my parents are doing a good job of making sure I don't have to do much other than roll from my bed to the bathroom. I do understand the guilt though. My parents are pretty much paying for my medicines since I'm poor (cellcept is $1600 a month alone). They work very hard and there isn't much I can do in return. I'm sure the best way to deal with the guilt is to just try to get better. Worrying and stressing would just make it worse. What I do, when I know I have a lot of things to do during the day, is pace myself and have naps in between. I get up early (my kitten usually wakes me yelling for food), do something, take a nap, do something else, take another nap, do something else, take another nap... and so on. The good thing is that you're at home and you don't have anyone on your back so you're free to nap as you please.

As for your family, they're just being unfair. You need to forget about them for now. Your goal is to get better. Focus that little energy you have on taking care of yourself and your husband. And don't assume anything until you see your doctor. Just thinking about what could be the diagnosis would drive you crazy. Try to keep yourself busy with the things at hand and don't think about what could be.

I know that with this flare right now I was really lonely. My friends have school and work, my boyfriend is working full time, my parents are at work all day, my brothers juggling school and work full time. I'm basically at home by myself with my lupus. Then they all got together and got me a kitten. That helped me a lot. Even though I have to spend some energy taking care of him, he's still good company. He seems to sense when I'm tired and calms down and cuddles when I nap. He follows me around wherever I go. Watching him case around a little ball really gets my mind off things. If anything that got me out of the mental "I just want to cry" phase was this kitten. I don't know if it'll help you Gidget, but maybe a pet would help you get your mind off things too.

Hope I helped in some way! Keep us updated and Take Care!
Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, nexium, furosemide, oscal + d


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/1/2007 7:30 AM (GMT -7)   
Gidget, when you wrote about all the the challenges of the "normal" everyday obstacles you face such as laundry, gorceries, etc, I felt like you got inside my head and described exactly what I go through on many days.  I can't believe how excited I get on the days I actually feel up to doing laundry and taking care of things around the house.  I know what you mean about your hubby too.  I have a wonderful hubby and can't say enough good things about him and how supportive he has been.  But, he has a very demanding job and often works 12-15 hour days so I don't want him to have to worry about doing anything at home (even though he does without any complaining) and I feel bad on days he comes home and the house is a mess, even though he really doesn't care about stuff like that.
 
I'm really sorry about the lack of support you get from your family.  I'm lucky in that my mom who doesn't live too far from me is very supportive, but she is 70 and is starting to have some health problems of her own.  Not long ago, my husband's sister, who is very sweet but doesn't understand this disease said that maybe if I got up and around and did more I might feel better because laying around all the time probably doesn't help anything.  I know her intentions were good and I tried to explain that there are days my body won't let me physically get up and do anything.
 
I'm not sure if you have seen the link that's been posted here about the Spoon Theory.  It's written by a woman who has lupus and I think she does an amazing job describing to healthy people what it is like to live with lupus everyday.  I'm thinking of e-mailing it to family right before the holidays since we will be seeing a lot of extended family who really don't understand how debilitating this disease can be.  Here's the website: http://butyoudontlooksick.com
 
Hang in there and let us know how your appointment goes.  (((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/1/2007 7:57 PM (GMT -7)   
Hi, Gidget. Hippi is right, the spoon theory is excellent! Take a look around the site when you visit. There are lots of other good things to read in the links listed in the gray column on the left side of the page. I have posted previously about another really helpful article that came in my Summer '07 Healing Well newsletter. You can use it as a coping device. The link is www.healingwell.com/library/health/salvucci1.asp The article is titled "Make a place for your Illness and put it in its place". I know that this does nothing for the understanding you're craving, but unfortunately I have no answers for that. I have had to learn since my disabling car wreck in '94, that YOU are who you have to depend on when it flat comes down to it. I'm not in any way trying to minimize when you are having real pain and problems to deal with either, please know that I have definitely been there too. I just know that YOU can change you and how you cope and deal...you cannot change others. Please take care of yourself and know that you can come here for understanding anytime.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/2/2007 11:21 AM (GMT -7)   
sharen, hippimom and melissa,
Thank you so much for taking the time to write back to me. I've been really depressed the last few days and you caring enough to write me back does help me very much.

The day I got my diagnosis (3 weeks ago), I already knew I had lupus, it was just getting a specialist to finally say it out loud. Funny thing was, as soon as he said it my mind started denying it. I thought maybe I convinced him I had it and it's not by the tests and the symptoms. How odd to think that after searching for so long for that diagnosis.

Do you ever go through one of those periods of time that you think if one more thing is dumped on me I am going to have a nervous breakdown? I cannot deal with anything else. I guess that is where I am at right now. Currently I'm in a bad flare that has lasted over a month. This is the longest I have ever had a flare. When you look at me you can see something is wrong, that I am not healthy. My ANA is very high (2,309) and has been consistently going up over the last three years; so it's obvious something is going on. Thank goodness the rheumy is trying to find out what is going on with me so he can help me. But that's not all that's going on, I'll really try and condense this because I'm sure it could sound trivial and boring to others.

I've never had children and after having a hysterectomy from cervical cancer last year, I'll never have children. I've lived through my sister and loved her children like they were my own. We became very, very close. In fact my oldest niece and I have been so close that she would come to me before anyone else when she's had a problem (and she's had quite a few). Over the last few years I've sent my nephew money so he wouldn't have to go to jail for a year. I've sent my oldest niece over $3,000 over the last 3 years to feed and diaper her children when her husband would take off and leave her with nothing. My youngest niece I offered her a place to live at half the cost it would for anyone else. My life stopped when she moved here, I was there every single time she needed me. My husband gave her husband a job, I bought her clothes when she was pregnant, I took her 2 older boys and bought them clothes, toys, gas scooters, ipods, you name it, we bought it for those boys. We even made a game room out of a rental house we own for them, with a pinball machine, air hockey, and video game. When her third boy was born, I was in the delivery room trying to pass a kidney stone but I stayed with her while she gave birth. I cut the cord. I was suppose to be there from the beginning of this little boys life and be a part of that babies life from day one. Six weeks after she gave birth she tried to kill herself. She managed to call me at 5am and I figured out what was going on and we called 911. Six weeks after she was released from a mental facility she tried killing herself again and nearly succeeded that time. After that attempt she told everyone she could that it was my fault and I was the reason she tried to kill herself; that I ruined her life. She never told me how I ruined her life. They've since moved out of state, her boys want nothing to do with me, she's poisoned their minds and they think that I am the reason their mother tried to kill herself. She's told her family that if they have anything to do with me she will cut them out of her life and her boys life. So now ... my sister, my niece, my nephew .... none of them will talk to me. They know "G" is sick but they have decided to cut me out of their live. So this is where I'm at right now. I have NO family. My parents passed some time ago, I have no aunts, uncles or grandparents. I have one sister, two nieces and a nephew who were a HUGE part of my life. I was their kids "Auntie". The Auntie who spoiled them. The Auntie who was always there. The Auntie they could ALWAYS count on. And now I'm the Auntie nobody wants anything to do with.

Oh, I know it sounds like I'm having my own little pity party here but I'm not. I'm just lost. Lost without my family who I thought loved me as much as I loved them. As God is my witness I have not left anything out to make me look good and them look bad.

I'm living in a small rural community with my husband of one year. I moved here almost 4 years ago from a suburb of Chicago. I have a few friends here but I really don't know more than a small handful of people that I could really say are "friends". When you don't get out much, it's hard to meet people. I'm going through this flare and I'm scared for what the future might hold with the lupus. I know it does no good to worry, and I'm not sitting here chewing my fingernails off worrying but I do have thoughts here and there about the lupus and it frightens me what might lie ahead with it. (i.e. flares, organ involvement, pain etc.)

I don't know why I even opened up and told you all this. I guess I'm telling you because I am so hurt by my family and I need help to move on.

Embarrassed and ashamed,

Post Edited By Moderator (Lynnwood) : 10/3/2007 6:27:42 PM (GMT-6)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/2/2007 12:02 PM (GMT -7)   
Gidget, please don't be embarrassed or ashamed of what you wrote. What I have learned about this forum is that we are all here for each other through the good times and the worst of the worst times. This is a place you can come when things are at their darkest and you know that other people will be here to listen and care and try to lift you up. Lupus is a lonely disease even with the support of family, but it must be terribly lonely when you have no family.

My heart breaks for you about everything you have gone through with your sister and her children - it sounds like they were your life. I can't imagine how devistating that must have been when they cut you out of their lives. There are obviously some mental health issues there with the suicide attemps and the only thing you can hope for is that she'll get some help someday.

I live in a rural area too (really really rural) and even though we've lived here almost 9 years I only have a few people I would really call friends. I have plenty of aquaintences - like other parents whose kids go to school with my kids. It is really hard to make friends when you are sick and even hard to maintain current friendships.

Hang in there and know that we are always here for you. (((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 10/2/2007 10:00 PM (GMT -7)   
Gidget,

How far from your suburb did you move? Did you have friends there who knew you were sick? Would it be possible to remain in touch with them? Would you be interested in looking for a church to attend? Do you have a special interest that might have a group or club to become involved with on a volunteer basis? Would you want to volunteer at the schools in the area (they are always looking for volunteers!)

I'm really sorry for the loss of your sister and her family. I have had the same situation with a sister and brother and not a clue as to why. I do have another sister, however, thank goodness. And my parents are living, although they are older and my mom is in very poor health.

You are not having a pity party. There is also absolutely no reason at all to be embarassed or ashamed. For what???? If you are, then everyone here is too :-) In reality, -for all of us here,it is hard to cope at times. I hopw you have faith in your rheumy. It sounds like he is trying to help you so that is good. Let us know how things are going.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/2/2007 10:30 PM (GMT -7)   
Hi Gidget, sorry I havn't been around much lately. I read everything you wrote and I have to tell you sick or not sick we deal with family problems. So talking them out is always a good thing. I don't know if you are aware of it but lupus does cause depression. Most of us are on some form of anti -d. I see you take prosax. Maybe you might try something else? Just a thought. I am just recovering from pnemonia which with my lungs is a really bad thing. I told my brother about it because I knew he would wonder why I wasn't at church. Here's the kicker they are the only family I have out here and he and his wife are in the ministry. If anyone else gets sick they are right there holding their hand and calling everyone on the prayer chain but for me I havn't even gotten a phone call all week to see how I'm feeling. I swear the people in this group care more about me than any one in the world. so you just keep talking about what you are feeling. It may just help you get passed this flare a little faster. Oh and I did like the idea of a pet. My dog taco is my life line sometimes. fleas and all!
your in my thoughts and prayers
hugs
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/3/2007 4:18 PM (GMT -7)   
hippimom, emmi and okie,

I live 600 long miles from where I use to. I'm still in contact with all of my friends back "home" which is nice; and I've even been able to go back and visit. I'm in a really really rural area too. The closest Target is 40 miles away. Thank goodness we have a Walmart.

My church family is wonderful. My husband and his family are pentecostal and they have wrapped their arms around me and accept me as one of them even though I don't conform (no jewelry, no makeup, long dresses only). They're still hoping that one of these days I'll get up to the alter and "get the Holy Ghost". They're a wonderful group of people and when they gather together and pray God does listen!

Actually I have 5 wonderful dogs. Two who live outside (large dogs) and three who share our home with my husband and I. They love to have "mama time" in the morning after my husband has gone to work and it's just us in that king size bed. We all curl up together and I tickle their bellies and they give me sugar kisses. My dogs are also my life line, they are the reason I get up in the morning. I wouldn't think of letting them eat day old food or stale water from yesterday. They're also my computer buddies when I sit on the computer or watch tv. My one Yorkie things that they only way for me to lay on the couch is for her to lay on me. If anyone comes close to me she growls to let them know she's on alert and doesn't like them getting too close.

I have a friend who owns a pet grooming salon and there are times when I am low that I'll just show up at her shop and will pick up the vaccum and clean up the stray hair on the floor or answer the phones. There are a few pets who come in for their weekly grooming that get all excited when they see me. Nothing like some puppy kisses when you're low.

Thank you all for the ear. I hope that I will be able to return the favor and be there when you need someone too.

Post Edited By Moderator (Lynnwood) : 10/3/2007 9:36:22 PM (GMT-6)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/3/2007 7:38 PM (GMT -7)   
Hi gidget--
It's so hard for people to understand how daunting day to day chores and simple tasks can be. Lately, getting out of bed is a problem for me. I live in a very rural area and spend a lot of time alone. My family has never been there for me like they have for my sister and my mother even intimated that I was not wanted and I was abandoned as a teenager and left to raise myself. I have learned to forgive my parents and sister as I realize that the reason they don't like me is not because I'm "nuts" as they would say, but because I'm the only sane one. It took me a long time and a lot of counseling to figure that one out since I grew up feeling like I was a horrible child and horrible person and a total burden. I was very close to my grandparents, but they are dead. But we are grown now and our families are with our spouses/boyfriends and children if you have them, pets if you have them. I don't care to be my mom and dad's little girl anymore. It wasn't that much fun. I'm happy to be there on the outskirts on my terms.

I know all about estrangement. I went through that with my oldest son during my divorce and after for years. It still goes on to some degree but my son doesn't allow it. Anyway, one thing I did that saved my relationmship with my son was to write him some letters, telling him how I feel and reminding him of the way things really were. Later in life, he rediscovered the letters and realized to his horror what his father and grandmother had been trying to do for so long. Perhaps you can write to your sister and remind her of the fun things you used to do together and explain to her how much you miss your relationship with her. If she doesn't reply or is rude in return then you have done what you can and have nothing to feel guilty about. Letter writing is so good because it gives everyone a chance to think about what they say and to read it and not feel threatened or confronted. I think you need to find out what they think you did to cause them to give you the swerve and to express to them how you are willing to work things out. That means a lot. Sometimes people can't deal with sick people, just can't handle that you are sick, it hurts them, scares them, maybe they are afraid to get close because they are afraid they would be hurt and lose you, or have to do a bunch of favors or deal with a bunch of complaining. They don't understand where you are at with your illness and they can only imagine how they would handle it and expect you to act the same way. If you can reassure them by being focused on them and what is happening with them, it helps. I can't talk to my sister about being sick, she just sees it as dumping. I can get no love or sympathy from her, so I don't bother. She just doesn't understand and doesn't want to. So I talk to her when I feel like it about what I feel like talking about, usually just to find out how she is doing. People here really care and this is a great place to get support and to figure out what to do. Oh, also, I give up on my family from time to time and don't talk to them when they get obnoxious, so I try to take control of the situation and realize it is my choice. Its sad that my family cannot accept my love or return it, but that is their choice. There are plenty of other people in my life that I'm close to. I hope you don't let this get you down, any of it. You can only do what you can do. You should not feel guilty about your insurance, really the insurance company should feel guilty. I know the hurt of not being able to have children, I had a hysterectomy when I was in my early thirties, though I had two kids, one I never saw, and one living with me. Anyway, when my sons got older and pulled away, it was very lonely and I wished I could maybe have another child, but am glad in the long run I couldn't. I was really hurt for a while. I hope you can rest and relax and forget some of this for a while and check out your blessings, it sounds like you have many and that you are a good person. Its not good to pile all the bad up. I say, pile all the good up! I'm sure you will work things out with your sister if you want to, you may decide you don't want to, who knows? and I'm sure you can get through this tough time, you are a very strong person who is very aware of what's up and very articulate and pretty fearless, I think. I will keep you in my thoughts and prayers and let me know what you decide to do and what happens and remember there are people here who understand and are here for you.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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