Understanding

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)

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)))))

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)

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

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)